Polymyalgia Rheumatica - A pain in the neck

My story

I was on vacation summer 2006, traveled to Berkeley to visit a friend for eight days, practiced yoga in 100 plus degrees, walked each and every day for hours. It was grand. Went on my next vacation in August to North Carolina and again had a great time. Came home on August 13th. On Monday morning, August 14th I could not move my left shoulder. I thought I had played too hard and just needed to recover from my holiday. I went to a yoga teacher training on the last weekend and found most of the arm/shoulder poses unavailable to me. In September I decided to detox, sure that I had contracted something on my last adventure. By October, my shoulders, neck and hips were bound up. I finally went to my PCP who referred me to Rheumatology and Immunology. Three months of pain pills, anti-depressants, hypnotics, sleep labs, x-rays, and increasing pain.

I was beyond miserable and saw no relief in sight. In February, I was referred to another rheumatologist. She was leaving the country but agreed to see me on her return. On March 14, 2007 she drew new labs and called in a script for prednisone. I started on 20 mg that night and 20 again in the morning.

I FELT GREAT!!! Seven months of misery and there was immediate relief. That was my four day dose. When it was reduced the pain returned and she thought I might have RA. ( I have a seronegative RA factor.) The challenging point is that I am 47 years old - Too young for this diagnosis. I am thankful she choose to treat the symptoms rather than follow an arbitrary standard, which have delayed the process even longer.

At this writing, I am a year post diagnosis and treatment. Prednisone is the miracle drug anyone who has ever been in pain or discomfort can attest, but comes with a long list of side effects. From that original life altering dose of 20 mg daily, I have been reducing the dosage so that today I am at 4.5mg and in moderate discomfort.

Along with Prednisone, I took Prilosec to protect my belly, calcium and vitamin D to protect my bones. I saw my rheumatologist monthly to check my labs and eyes. Then had bone density test as well. Because of the age of onset, there is some suspicion that this may be a precursor of RA.

So, here are that facts I found after I had the story. You too...

Here are the facts:

 

Polymyalgia rheumatica is a rheumatic condition that is frequently linked to giant cell (temporal) arteritis. It is a relatively common disorder, with a prevalence of about 700 per 100,000 persons over 50 years of age.

Polymyalgia rheumatica occurs in about 50 percent of patients with GCA, while approximately 15 percent of patients with PMR as the primary diagnosis go on to develop GCA. Some patients have manifestations of both disorders occurring at different times.

Polymyalgia rheumatica is almost exclusively a disease affecting older adults, and is rarely diagnosed under the age of 50 years. In older persons its prevalence approaches that of rheumatoid arthritis.

Few nonwhite individuals have been included in most case series. However, PMR occurs in African-Americans and the disease presentation and response to treatment are similar to that in whites.

Polymyalgia rheumatica is classically characterized by a subacute or chronic onset of aching and morning stiffness in the shoulders, hip girdles, neck and torso in patients over the age of 50. The symptoms are usually symmetric, but asymmetric pain can occur. Difficulty with activities related to the shoulder and hip stiffness may be reported as trouble dressing (eg, fastening a bra normally, donning a shirt or jacket, or pulling on stockings). Some patients also complain of malaise, fatigue, anorexia, weight loss, and fever, but the high spiking fever that can occur in GCA is rare in patients who have only PMR.

Synovitis and bursitis are considered to be the causes of the discomfort and stiffness found among patients with PMR. However, because the shoulders and hips are surrounded by large muscles, small amounts of synovitis in these joints are not readily detected on physical examination. By comparison, palpable synovitis in more peripheral joints (knees, wrists, and metacarpophalangeal joints) is relatively common in PMR.

Some patients develop swelling and pitting edema of the hands, wrists, ankles, and top of the feet . The edema usually occurs with other signs of PMR but can be the presenting symptom. It appears to represent tenosynovitis and synovitis in regional structures. Tenosynovitis can also cause carpal tunnel syndrome, which occurs in approximately 10 to 14 percent of patients with PMR.

Physical examination in PMR may reveal decreased active range of motion of the shoulders, neck, and hips. Despite the implications of the name "polymyalgia", muscle tenderness is not a prominent feature of this disease, and what tenderness there may be about the shoulders is more likely due to synovial or bursal inflammation than muscular involvement.

Muscle strength is usually normal. However, weakness may become a problem because of disuse atrophy or lack of effort on examination because of pain.

The characteristic laboratory finding in PMR and GCA is an elevation in the erythrocyte sedimentation rate that can exceed 100 mm/h. However, values below 40 mm/h are seen in as many as 7 to 22 percent of patients. This is most likely to occur in patients with limited disease and fewer systemic symptoms and in those who have been treated with corticosteroids.

While there is generally no need in clinical practice to resort to MRI or ultrasonographic imaging in the majority of patients suspected of having PMR, such testing may be useful if the diagnosis is uncertain and/or there are relative contraindications to a therapeutic trial of corticosteroids.

The diagnosis is more difficult to establish in those with atypical presentations. These include age 40 to 50 years, asymmetric symptoms, and ESR less than 40 mm/h. Although there is less experience with use of serum CRP testing to establish the diagnosis of PMR, it may be reasonable to substitute an elevated serum CRP as a criterion for PMR if the ESR is less than 40 mm/h.

As noted above, there is considerable overlap between PMR and GCA. Nevertheless, patients with "pure" PMR lack the classic findings of GCA such as temporal artery tenderness, headache, jaw pain, visual loss, and evidence of noncranial ischemia (such as arm claudication or cerebral ischemia)

The differential diagnosis of PMR includes early seronegative rheumatoid arthritis and a variety of other disorders that can usually be easily distinguished from PMR. These include hypothyroidism, infective endocarditis, fibromyalgia, malignancy, polymyositis, bursitis/tendinitis, and amyloidosis.

Patients with rheumatoid arthritis usually have symmetric polyarthritis of the small joints of the hands and feet, which is persistent and only partially responsive to low doses of prednisone. These findings are different from that in PMR in which fewer joints are swollen, and the swelling subsides completely in response to low dose prednisone.

Polymyalgia rheumatica is characterized by a prompt response to corticosteroids, usually in low doses. The initial dose of prednisone needed to alleviate musculoskeletal symptoms in PMR is lower than that required to control the vascular inflammation associated with GCA.

A higher ESR, larger initial doses of prednisone, and rapid tapering may be associated with earlier relapse. The initial goal of therapy is to achieve symptomatic control using a minimum dose of glucocorticoids. After a period of quiescence, a slow taper of glucocorticoids is begun. The following represents our usual approach:

Depending upon the patient's weight and the severity of symptoms, the starting prednisone dose of between 7.5 and 20 mg/day. Patients usually respond quickly and often note improvement after the first dose. The dose should be increased if the symptoms are not well controlled within one week. Such patients may have underlying GCA or a paraneoplastic syndrome.

Occasional patients find that a single daily dose of prednisone does not provide relief from evening or night-time pain or stiffness. Use of a divided (BID) dose may suffice for some, while others may require an increased total daily dose.

Because many patients will require corticosteroid treatment for more than six months, an assessment of bone mineral density is suggested at or near the time prednisone is begun. Calcium and vitamin D supplementation are appropriate for most patients. Prophylactic use of other agents, such as bisphosphonates may be considered for some. Patients found to have osteoporosis will need therapeutic, rather than preventive, intervention. These issues are discussed in detail elsewhere.

Among patients with PMR who are at increased risk for corticosteroid-induced side effects, the addition of methotrexate may be steroid-sparing, as suggested by some, but not all, studies. However, methotrexate is seldom indicated for the vast majority of patients with PMR but without GCA, since adverse effects are relatively mild with the low doses of prednisone required to adequately control the disease.

In most patients, PMR runs a self-limited course over months to years and steroid therapy can eventually be discontinued. There is no evidence of increased mortality associated with this disorder. As a result, every effort must be made to control symptoms with a minimum of drug-induced side effects.

In addition, ongoing monitoring should be performed for signs suggestive of GCA. In a large series described above, 4.4 percent of patients with pure PMR had a positive temporal artery biopsy. These patients are usually not detected unless they develop manifestations of vasculitis, which presumably can also occur over time in some patients with initially normal temporal arteries.

A current note

That's my story. It took a great deal of research to find information on this disorder as it is often overlooked in the arthritis pages. I am thankful to both my rheumatologist and friends in the medical field who continually supported me when it looked like there were no correct answers. Women in pain are often medicated with anti-depressants, hypnotics, and minimal pain relief medications. I was in pain, and had a many sleepless nights, which clearly could lead to depression. Once the pain was treated I became the vibrant excited person I know myself to be. Even though I still have pain and stiffness, I am able to move in my life. And I am glad.

Comments 248 comments

Sheilah 8 years ago

I have been diagnosed with PMR and am going to the rheumatologist for my first visit in three days. What you've written has given me more hope and more information than anything else on the web. Thanks.


Joan 7 years ago

Have been fighting fatigue, pain, anemia for awhile, I felt like a zombi The Dr. diagnosed as PMR, put me on prednisone, 20 mg and I felt like a new person. She told told me to come down on dosage every 5 days . Last visit she decided I didn't have PMR and am now down to 12.5 mg. The lower the dose, the worse I feel She doesn't want me on pred., I don't know if that is because she feels the side effects are too bad but it sure was nice feeling like a human for awhile. Any ideas what could be going on?


Damselfly profile image

Damselfly 7 years ago from Columbia, MO Author

PRM is diagnosed by symptoms of stiffness and pain in the neck, shoulders and hips, releived immediately with prednisone. There are also confirming lab test - elevted SED rate and CRP. In my case the lab results followed the symptoms so I didn't get a diagnosis for nearly seven months. If you have indicative lab results and symptoms I would address the treatment again with the rheumatologist. I still take my prednisone, 5 mg, daily. Every now and then I reduce the dosage, but wake in the middle of the night with intense neck pain, unable to turn my head, stuck. I also take prilosec, vitamin D, calcium, and a multivitamin.

There are plenty of side effects that can be overcome. For me, the pain was more than enough to keep me diligent of my heath and aware of my body. My doctor suggested a switch to methotrexate. I declined. It is an ongoing "discussion." Keep thinking and holding out for your best solution.


Damselfly profile image

Damselfly 7 years ago from Columbia, MO Author

Here is a link to understanding lab test, along with lots of other helpful information, though the arthritis groups do not offer much about PMR.

http://www.arthritistoday.org/treatments/lab-test-...


Bill 7 years ago

Thanks


Maureen 7 years ago

Hi Damselfly, Thank you for your post. I have had PMR now for 3.5 years. I am off pred and taking Mobic for neck and shoulder pain that is not as servere as when PMR first entered my life. Getting off of Pred was probably one of the most difficult challenges I have had to go through. Do you know of any support groups for people with PMR?

Maureen


Damselfly profile image

Damselfly 7 years ago from Columbia, MO Author

Hi Maureen,

I haven't found any support groups that I would join. The one I found seem to be populated by those struggling with the dis-ease and overwhelmingly negative about taking prednisone. Every now and then, my neck will get stuck in the middle of my sleep and I remember well how intense the pain was at the beginning. I am on a maintenance dose of 5 mg daily and plan to stay there, provided my doctor will prescribe it. The rheumotologist consistently offers methotrexate as remedy. No thanks. I have taken mobic in past but found no relief. That could be due to misdiagnosis.

I wonder if the lack of easily found support groups is effected by the prevalance of a diagnosis to those who are over 50 at onset, and non-classification as arthritis. I did find an absolutely funny exception. Check out the BBC series, Waiting for God. The main character has PMR. She has a very matter of fact attitude. After two years, so do I. Every now and then I longingly remember the days before I was in pain, but that is the past. They are sweet memories to occupy my time when I am distracted from the joy of now. Thankfully, I am commited to living in this very moment.

Have a wonderfully delightful day.

Maria


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Lyricallor 7 years ago from Croydon

This is all so familiar...the tests, medicine, symptoms etc. I have had RA for almost 19 years and osteo in the knees. I had to stop working because of neck pain and paralyzing spasms. This article was quite interesting. I am learning more each day.


Sally 7 years ago

Thanks for explaining this disease! My dad had PMR and temporal arteritis. I couldn't find out much about it at the time. He took prednisone for it and it helped a lot. I wonder if there is a connection to amyloidosis or Alzheimer's with this disease? My dad died of Alzheimer's and I have amyloidosis. The symptoms you describe are exactly what I experienced over a six week period in my twenties. I never went to the doctor and tried to carry on the best I could without anyone knowing. I was sure they would think it was all in my head.

I like your philosophy-appreciate today and the "new norm" we with chronic diseases accept.


Kathie 7 years ago

Thank you for an excellent summary of the literature and personal experience. I was diagnosed with FMS about 12 years ago, but my doctor ignored some of the crucial blood tests for about the last year and a half until I wasn't able to lift my arms one day and was suffering from an old knee surgery. My doctor looked like a light switch had turned on and he said, "I think you've been misdiagnosed and it's actually polymyalgia rheumatica". He took more blood tests and within five days started prednisone. I'm very active: golf, yoga, pilates, hiking - I just want to keep moving. Prednisone was amazing. I started at 40 mg for three days, 30 mg for three days, and leveled at 20 mg. I felt great. I could golf, do yoga, move, sleep (until about three am when it wore off). I found I had to split the dose, but it was working. The doctor wants me down to about 10 mg & as soon as I started dropped, the symptoms came back with full force. I'm at 15 mg now and want to go back to 20. From some of the research I'm finding it says to not drop the dose until the symptoms subside. Any suggestions on dropping the dose? When does it absolutely have to be dropped? And, is it okay to increase it some when the symptoms are worse? Thanks for any ideas you have. KMB


Damselfly profile image

Damselfly 7 years ago from Columbia, MO Author

Good morning Kathie,

What I wiil say is, that drop from 20 mg to 15 is just sad, sad, sad. There is no way past the feeling. I was a giant at 20. At 15 mg, I was okay. For me, we divided the dose so that I was taking 10 in the morning and 5 at night. Apparently a divided dose is more effective than a single one. Most of the time I just lamented the change. On the other hand, I knew it was in my best interest to reduce the dosage. I had a lot of bruising, mouth sores, and weight gain. At 20 mg I had gone back to running, but at 15, I just didn't feel like it. I was still teaching yoga all the time even when I couldn't practice.

If I had it to do over, I would find a way to keep moving even as I reduced the dosage. I mean, find someone to drag you along, and keep you accountable to the process. Eventually, you will be headed to 5 mg. It can be a very slow process. I am thankful for a doctor who was willing to listen to me and allow me to move at my own pace, even as she wanted me to switch to methotrexate. Research that for yourself. It was not for me. I was unwilling to live with those side effects, but it is a steriod sparing drug.

As you know I am now three years since the first symptoms appeared and two plus since I started prednisone. Today I workout six days a week. Cardio on each followed by yoga on three of them. I am gentle in my body and honor how I feel every moment. There are some days I just don't feel like going, but remember my commitment and head out the door. That's the hardest part of the journey. I find I feel fabulous once I have completed the process.

I have very few flair ups these days and when they do occur it is in the middle of the night when I realize I can not lift my head ot turn my neck. I almost panic as it feels just like the first time. I have learned to breathe through the pain and to remember that I can wait this out. I use a massaging squeezing technique on the muscles in the back of my neck and in a few minutes my neck is released and I am back to sleep. In the morning it is only a memory.

I will say that I added quite a few supplements to my diet to support my immune system, joints, muscles, and sense of well-being. Because I think they are all indivinually important and individual I will refrain form recommending any. I think that is another area of research, trial and experience. What works for some is just not applicable to everyone.

Be present with what is. Let this be the only moment. Live each now to the fullest. Namaste


Kathie 7 years ago

Thank you for your gentle and encouraging comments, Dameslfly! So are you down to 5 mg? How long did you take to get to that dosage? How often did you take the dosage down and did you ever go back up with dosage when you had a flare? Did you ever have injuries that would cause you to flare? If it were not for yoga, I would not be able to move. Yoga keeps me golfing. I'm grateful for the peace and gentle movements it allows me. I've been an athlete - high octane athlete my entire life. The slow down is difficult and the learning to be in the present is coming gradually. I realize that each day is it's own special entity and to go with what my body requires. I did learn many years ago after my first diagnosis that rest is okay. The advice was, "push a day, rest a day; push an hour rest an hour; etc." The amazing thing of this is that it gives me permission to allow my body that time to rest.

One more question - have you had vision blurriness with the prednisone & what did you do for it?

Thanks again. Namaste


Damselfly profile image

Damselfly 7 years ago from Columbia, MO Author

Hi Kathie,

My doctor said I could have two years, but it didn't take quite that long. I understand the issues around movement. Before my flair up I taught 21 aerobic classes a week along with my yoga classes. The hardest part was the memories of what my life had once looked like. Eventually, it was yoga that kept my gaze in the present.

I can't really associate my flair ups with anything. The first one occurred the morning after my vacation. I just woke up stiff in the right shoulder and it continued until I could barely move. I was scheduled for yoga teacher training and while I completed one, I cancelled the next. My body was so limited in movement I could not imagine spending 9 hours a day in yoga.

I haven't noticed any blurred vision that I think is related to prednisone. I did notice so visual changes, but nothing serious. I see both my rheumotologist and optometrist regularly. Also, I have had a bone scan to check for bone density as steriod leach calcium from the body.

Be well. Be in Love. Namaste


Ali Christensen 7 years ago

Hi, I have just been diagnosed after 18 months of severe pain. i am 46, and felt about 86. I had just about given up on life, and was finding my job almost impossible to deal with as it is so active. The prednisolone was incredible, it worked in a day. I am so excited as i seem to be able to do stuff now. I want to rush out and join the gym again, go swimming that i just couldn't do because of the pain in my shoulders. I feel like I have been set free. i don't know what the future will hold, but I'm not giving these drugs back. The only thing I am nervous about is what this means having this condition so young. i am worried about underlying health risks, but hey for now I can move!


Kathie 7 years ago

Hi Damselfly: it's been six weeks since my last post and an interesting journey. It's the middle of the night and I'm back up with the night pain. I saw a specialist who disagreed with my doctor about the dose of prednisone and just wanted to treat as FMS with antidepressants (I refuse to go that route); however, it looks like it was an arrogance issue on the part of the specialist. He wanted me off the prednison within a month. At 20 mg I had less joint pain, but had a plethora of side effects making life really difficult: blurred vision, muscle weakness, lack of coordination resulting in falls, bruising, cuts that wouldn't heal, extreme fatigue, and weight gain. After consulting with my GP again, we decided to see how far down I could go on the prednisone to control the pain and lessen the side effects of the medicine. At any rate, I've dropped the prednisone from 20 mg to 15, to 10mg and tried the drop from 10 to 5 yesterday - here I am up in the night again with pain. I'm experiencing a really strange taste in my mouth. Ever have that? I was just beginning to feel normal at 10. I'd actually gotten back out golfing and to a pilates class. I'm not sure that I am asking a question - more of sharing the experience and grateful that you are there to share it with. Thanks. KMB


Damselfly profile image

Damselfly 7 years ago from Columbia, MO Author

This journey continues to be a learning experience. I will restate that I started with my GP and was refered to a rheumatologist who offered anti-depressants and pain pills. He had the answer, but was reluctant to offer it, probably because of my age and My ego. I was so anti-prednisone. So seven months later, I was still in pain and had been to a pain clinic where they were offering trigger point injections and more pain meds that you can imagine. Because I didn't understand the need to have new labs or accept whatever the diagnosis, I was in great agony. Another referral brought me to the the doctor that pieced the riddle together. She acknowledged that I was too young for the disorder, drew new labs because the others were both old and from an outside facility. Even before she had the results she gave me the prednisone prefering to treat, rather than delay. (I had already experienced plenty of delay). Yes, there are plenty of side effects. I found a forum where all the comments were about the horrible nature of prednisone. Perhaps they had not been in as much pain as I had. I sought out remedies for the side effects. I found supplements to support my imnmune system.

BTW, there is a prescribed way to lower the dosage for prednisone, generally at 10% over several days or a week. Drastic drops are likely to cause not just flare ups, but a return of the initial complaints. The website with the most informaion is UpToDate. The most significant information is accessed only by licensed professionals with a subscription. Also, decreasing prednisone is generally directed by the drop in SED rate and CRP. Repeated lab test can offer indications of the effect of medication as well as how your body may be reacting.

For me this has been an ongoing journey of letting go. Even today when I rarely have flare ups, I occasionally find a bruise I have no memory of bumping, or forget to stay centered in both the present and My body and not the expectations of others. But rest assured, when I forget, I am reminded in the most dramatic ways. Today I am four weeks into healing a hamstring pull. I realized ths moring how far I have strayed from honoring myself completely. sometimes we think we are only holding on to ourselves in the face of opposition. Sometimes it is even more important to be true to ourselves in the face of admiration.

Imagine there is more to this experience than pain, discomfort and inconvenience, and find the lesson offered just to you. It may take a while to get past the disappointment, but I hold that there is more.

In wellness. Maria


Kathie 7 years ago

Thanks Maria - and to everyone else posting. I just re-read the postings from top to bottom and am recognizing some distinct patterns. It appears that most of us are too "young" for this diagnosis. That was the argument the specialist (rheumatologist)told me when I walked into his office. My doctor, however, totally disagrees that you have to be over 55 to qualify to "get" PMR. He has seen it often in his career and currently treats another woman in her mid-forties and me (in my early 50s). I appreciate that he is also treating the person and not the numbers on paper. Thank you, Maria, for the excellent sites to check out and the support in the middle of the night when it hits like a brick. Even though there is no known support group for PMR, this dialogue does help me feel like there are others on the journey. I've been using an infrared sauna 5-6x a week to help clear my system of any residual toxins it isn't using for healing, eating fresh, drinking lots of water, yoga, pilates, and am thankfully back to golfing. KMB


Ali 7 years ago

Hi Ladies

I am really finding all your postings so helpful as I am struggling with this a little. I went swimming this morning the first time in a while. i used to be such a good swimmer. The first couple of lengths my shoulders ached but I loosened up and managed 30 slowly. My body is very tired now, but I am so pleased that I managed it. I have been so cripppled by this. Is there anything dietry wise that will help this. I am scared of getting GCA as I believe it is a possibility. You mentioned Yoga, but I find it extremely hard to bend. Two years ago i ran the London marathon and the Great wall of China half marathon. Now I couldn't run to catch a bus. The steroid treatment has been hugely welcomed, but even so my body still feels strange. I feel like I am having a constant rush and I can't sleep for more than 5 hours before the pain in my back makes me get up. Have been mixing dried wheatgrass and spirilina with fresh squeezed fruit and veg, I wish I could tell you it was making a difference but not as yet... Good luck ladies


Kathie 7 years ago

Hi Ali: Maria can probably give you some great advice on modifications for yoga poses. I look forward to my yoga and pilates because I can be on the floor! I find the modifications change according to my pain. Some days I can reach the floor on a forward bend, other days I need the assistance of a block. Adjusting the time of day to my exercise helps, also. I'm always better in the afternoon or early evening. Be sure you are warm when you exercise. I understand, completely, your not sleeping. I can only go about an hour and a half before I'm up and walking around and then going back to sleep. The early morning hours - from 3-7 are the hardest. I find if I take my prednisone during one of those early morning wakings (around 4 or 5 am), it makes my day turn on faster (around 10 or 11 am instead of 12 or 1). I also found it helpful when I was on a bit higher dose of prednisone to split the dose. I'm on 10 mg right now, so sometimes I'll take 5 mg at 4am and the other 5mg at 6am. I'm supposed to be going down to 5mg, but my symptoms are coming back with a vengeance, so I'm not sure what will happen. I have a very good massage therapist, and while I would benefit from going once a week, I can only budget once every 3 or 4 weeks; however, she does help alot. It took awhile to figure out the right pressure, but she's very good. I also see an osteopath once a month (it's covered in our health care) - she's very good for alignment. As far as food goes - fresh and raw seems to help due to the anti-inflammatory benefits from those foods. Supplements are a personal issue. Seeing a naturopath may be helpful, but often expensive and you have to be careful in choosing someone. Often a pharmacy will have a very good nutritionist on staff that can help with supplements. I've found the pharmacy nutritionists better than those at health food stores. They seem more grounded and balanced. Good luck. Hang in there - I've been told by others, and by Maria on this site, there is life after PMR! KMB


GINA 7 years ago

HI, IVE JUST RECENTLY BEING DIAGNOSED WITH PMR (THIS WEEK), AND IM JUST 43YRS OLD. I WAS UNTIL RECENTLY A FITNESS INSTRUCTOR, BUT FOUND IT INCREASINGLY HARD TO MAINTAIN MY FITNESS AND STRENGTH, AND WAS FINDING MANY OF MY OLDER CLIENTS WERE FITTER AND MORE ABLE IN MY CLASS.

I WAS ASSUMMING THE STIFFNESS WAS FROM TOO MUCH EXERCISE, AND EVERYMORNING I WOULD WAKE STIFF AND TAKE A HOT BATH TO HELP LOSSEN UP, AND JUST GET ON WITH IT, NEVER DID I REALISE THIS WAS NOT FROM KEEPFIT,. SINCE RETIRING (6WEEKS NOW) MY MUSCLES ARE WEAKER AND IM EXPERINING MORE EPISODES OF FATIQUE AND PAIN. WORSE AT NIGHT. AND TIRENESS THOUGHOUT THE DAY. I HAVE RECENTLY STOPPED RIDING MY BELOVED HORSE, AND FIND MUCKING OUT EXTREMLY TIRING, MY WALKS WITH MY DOGS HAVE BECOME SLOWER AND MORE LABOURED BUT CANNOT LET MY ANIMALS DOWN. I WILL BE STARTING THE STERIOD TREAMENT VERY SOON, AS I WAS IN DENIAL ABOUT HAVING PMR. AND THOUGHT I WAS LACKING VITAMINS AND NEEDING MORE SLEEP AND WAS PUTTING IT DOWN MAINLY "COLD TURKEY" WITH THE FITNESS. LOOKING BACK AND DISCUSSING THIS WITH MY HUSBAND, WE BOTH AGREE THAT I HAVE PROBABLEY HAD PMR FOR A LEAST 2 YEAR (MILDLY) AND I THINK THE STRENGTH FROM DOING FITNESS AND PROBABLY THE "NATURAL PAIN RELIEFING ENDORPHENS" HAVE HELP ME THOUGH THAT PERIOD UNTIL NOW.

SO MY QUESTION IS ... IS THERE MANY OR ANYONE YOUNGER THAN ME (43YRS) WITH PMR. I ALSO WONDER IF THIS WILL EFFECT MY HEATH MORE IN LATER LIFE TAKING STERIODS EARLIER?

MANY THANKS

GINA


Damselfly profile image

Damselfly 7 years ago from Columbia, MO Author

Good morning Kathie, Ali and Gina,

We seem to have echoing sentiments. From my readings, PRM seems to strike those who have been active previously and what treatment delays that exist often stem from the notion that rest, supplements, and self care will resolve the dis-ease. As we now know, there was an underlying pathology at work which requires medical intervention.

My most recent google search turned up more sites for review and discussion (than existed when I was diagnosed). While this is important for new seekers of information, I found it merely repetitive.

My intention here is to provide information, support and encouragement. No matter how it feels, this struggle is not unique, apparently even regarding age. (The literature will speak differently.) What are the deeper principles of growth and understanding available for us during this time? As we face the sunrise, what does it take for us to dance joyfully into the day?

In gratitude,

Maria


sheila 7 years ago

wondered if weight training is contraindicated for polymyalgia rheumatica.


Ali 7 years ago

Hi Girls

I have been feeling really defeated this last couple of weeks. i have been seeing a physio, a kiwi girl who is being very supportive with this. She has given me an exercise programme at the gym to keep my body moving. I am persevering but feel worse, and am struggling at work. The funny thing is that i seem to be getting more symptoms now and I am wondering if I am creating these in my head. My jaw is painful and aches, I can't lift my arms for very long and my neck has stiffened so much. My job is very active, I don't have a desk job, and I work shifts sometimes till 11pm. I am not usually a wimp, but I just feel like crying. My daughter is now hopefully in remission from a horrible cancer she has had over the last 2 years, it has been an emotional rollar coaster, do you think its possible i got this from all the worry. I know I was ill after I ran the marathons, as I really did them too close together, but I think i am just trying to find a reasonable explanation as to why this is happening to me. Sorry to sound so defeated, this is not normally me. I wonder if life situations can trigger things like this. And Gina you are certainly younger than me, I am 46 now. Anyway ladies, I am seeing my doctor tomorrow so will load it all onto him. speak soon Ali


Kathie 7 years ago

Hi Ali - hang in there. It's nice to hear your daughter is in remission. That must be an incredible relief. Keep up the hope. Stress can do nasty things to our systems, and I understand your feeling like you are defeated. This is the time to be the most gentle with yourself. I recommend yoga - especially for the breathing and restorative properties. I practice at home with DVDs - it's helpful especially on days like today when I can't make it out to my classes. The jaw pain could be from grinding your teeth and clenching. That's where breathing is helpful, too. I'm on a drop down from 10 to 9 mg of prednisone this week and another planned for next week. We'll see how it goes. I'm definitely noticing the increase in arm and shoulder pain, but hopefully, I can work through it. Who knows why we get these crazy illnesses? It seems to hit those of us who push the hardest, and it's even more frustrating because we don't like to take it 'sitting down'. I told my husband the other day that having a chronic illness is especially hard for me because it goes against my personality. He laughed. I felt like crying. Laughing is a good medicine, though. Studies prove this. Try to do gentle things for yourself, give yourself permission to not feel well, sit (or lie down) and read that book, watch that silly television show, breathe. Come back on here if you need more support. Relax that jaw! I'll try to go and take my own advice. KMB


Ali 7 years ago

Thanks Kathie

I was on a bit of a downer. I was on 30mg presidone which I think is what is causing a lot of these other problems. I have not been able to pick my head off the pillow for three days and my blood pressure is through the roof. They are talking about putting me in hospital and have written me off work for two week. Just what I need before christmas. However Dr has reduced my steroids down to 25mg then to 20 next week. I am hoping this gets to the bottom of it. I dont feel so low now, I'm a fighter like us all. I will try yoga. I do meditate reguarly anyway and am in my third year of a counselling diploma, which helps me quite a lot. This diagnosis is hard to accept when you have always been so independent and active, and you are right when you say 'I have to give myself permission to not feel well'. That is something I am having to learn from scratch. Always the carer, never the cared for. Its hard. Let me know how the pain goes as you reduce your medication. My physio told me that she worked with some one who was off the steroids in 8 months, still had pain but it was manageable. Good luck and thanks again Ali


Kathie 7 years ago

You're welcome, Ali. I think you'll find you feel better after the dose of prednisone is dropped. The pain may be more, but you'll be able to manage it. I found the side effects of the prednisone quite overwhelming at 20mg. I'm down to 9 right now (so far so good with the drop down) and just have to fight with the weight gain. The doctor says it is just water and will go away when I'm off the med; I'm frustrated because I lost quite a bit of weight last year, bought new winter clothes, and now can hardly get them zipped up. It's a weird weight too - lots in the upper body. The doctor seems to think I'll need to stay on 5-7 mg for at least a year in order to manage the PMR - I'm only at 5 months now. Needless to say, it frustrates me to have to fight with the weight again. I had also been to the point where I was ready to stop taking blood pressure medicine (genetically inherited and exasperated by stress), but the pred made it go back up, so I had to up the dose and just wait. I think a great deal of this illness is a waiting game. Waiting in the morning for the kinks to get out, waiting to get through the pain, waiting for energy to come back, on and on. I hope they don't have to hospitalize you. Good luck! I'll be thinking of you :) KMB


Ali 7 years ago

Hi kathie

I did end up in hospital unfortunately due to my blood pressure going completely out of control. I have reduced my pred down to 20mg, and am hoping to get it down to 15mg at the ende of this week. My blood pressure med has gone up and i think it is all stablelising now. Am home anyway.

Its really nice being able to sign up to this web site and find you and the others feeling the same. Yes weight is a real issue with me. I out in a lot over the last 12 months from just being totally immobile with this PMR. I hate it and now on the steroids its going to be more difficult than ever. I guess we have to think about what's inside at the end of the day, and know that there is an end goal and once we are off the meds then things will improve. Its all very unsettling, and very difficult to not feel in control of our bodies. But we are in control of our minds, and staying positive and focused has to be the way forward.

I had acupuncture last week in my neck and that really loosened it up for a while. Anyway thanks for your posts, they are quite comforting would you believe. hang in there Ali


Kathie 7 years ago

Hi "Hang in there Ali"! Sorry to hear you ended up in hospital, but happy to hear you are home. Keep us posted! K


Kathie 6 years ago

Hey Maria - could you please tell me more about methotrexate and why you've declined taking that drug? I have a friend with PMR and is doing very well on it after she had a bad run with prednisone (she is an RN). I'm asking because the side effects of the prednisone are becoming overwhelming, and the prednisone is not reducing the pain. Thanks. K


ali 6 years ago

Hey Kathie and Maria

I would be interested in this also. I am now down to 10mg of pred. I feel so much better in myself but the pain is back with a vengence. Even typing on the computer makes my back and neck ache so much. I can't get comfortable unless I am taking tremadol. I can hear in your post Kathie that you are also struggling with this. Its hard when you have been such an active person before and there is no explanation why it has happened to you. Hang in there Ali


Kathie 6 years ago

Hello PMR buddies: it's taken me awhile to get to this update mostly because my arms hurt so much I was unable to lift them high enough to type on the keyboard. After several months of trying prednisone, finding it not giving me much relief, and suffering from more side effects than the pain of the med, I asked the doctor to take me off them. Here were the side effects: almost 20 lb weight gain (and I have an insanely good diet and try to exercise at least 6 days a week); bruising (from even small bumps); skin tearing and blistering (even in shoes I wear all the time); complete loss of sex drive (my poor hubby); headaches; no taste buds (everything tasted blah); and, my skin feeling so tight all the time it was like a hot dog right before it splits when cooking. Lovely, you just wanted to hear all of that didn't you?

So, I figured there HAD to be another way to deal with the PMR. A friend takes Methotrexate, but my doctor wouldn't even discuss it - he says it's much too hard of a drug to take with adverse affects. My nurse friend just shakes her head. He decided to try meloxicam - which is a NSAID used for arthritis. It took me several weeks to get off the prednisone. I dropped from 20mg to 10 then 9, 8, 7, 6, 5, 2.5 (each for two to three weeks, then one week, and four days after 6) and then 2.5. I suffered the same cycle with each one; at a drop drown day extreme fatigue, lack of movement in my arms; second day was the obligatory migraine; third day nausea; fourth day almost normal. The hard thing was when I was at 6 mg; I still seemed to have some control over my pain. I hit the brick at the 5 and 2.5 marks with such limited movement in my shoulders, hands, hips, that it took all I could do to get things ready for the holidays. My husband and son decorated my house and tree. We aren't celebrating our family Christmas until this Friday (New Year's Day) due to schedules. It'll be everyone here at our house - which I love, but with two toddlers around three big dogs, two pregnant daughters-in-law, tons of food, and lots of mess, well... I think you get the picture. Let me get back to the prednisone story. I waited for the complete 0 intake for the 26th hoping it'd give me a week to stabilize before the family comes Thursday night. Saturday was brutal. I had pain everywhere – not just my shoulders and arms, but down my hips and down my legs. It was the deep stabbing burning pain that takes your breath away. Sunday wasn’t much better. It's now Wednesday. I'm off prednisone, that's good, and taking meloxicam.

I had to resort to some heavy-duty painkillers (endocet and emtec) to get through most of the nights and mornings since Saturday. Last night it was only one endocet and two emtec. Every day is a bit better than the day before, but now the total fatigue has hit. I just want to curl up on the sofa in a blanket and watch movies. I kept doing yoga through the worst of it and then stopped doing any exercise last weekend, but did try to sit in the sauna for 15-20 minutes each day. On Monday I did a gentle Pilates and yoga, took a hot shower, and had a toxic release massage. The massage was wonderful – I wish I could have one every day! That routine led to a better night, and I woke yesterday feeling better – very cranky and irritable, but better. My husband wanted to golf, so I thought I’d give it a try. Yep, bad idea. It was cold, but not wet. Just slightly overcast. The course was in great shape and fairly empty. The perfect afternoon to golf. I couldn’t hit the ball. I played three holes and had to stop. It was sad. Last night was a nasty night – I was up four or five times and today I am just so tired I can only move from chair to chair. I’m sure this is the classic chronic fatigue flare brought on by the hit to my system. I’m just waiting to feel better. Believe me, if I could come up with a magic pill to get my life back, I would take it. It’d have to be better than these painkillers I take! I am angry that I have to lose weight brought on again by a medication. I worked all winter last year to finally lose weight I gained when I was first diagnosed with CFS/FMS 13 years ago and the doctors tried all sorts of crazy meds. It took me over 10 years to finally get something to kick in, work, and the weight loss to begin; and, then the PMR hit this summer. Over the years I pretty much have tried everything from naturopathic remedies, special diets, on and on. Doing yoga and using the infrared sauna on a regular basis last year was what finally turned a corner for me with my health. From that point I was able to go on to golfing and curling. At this point, today, I’m going to trust that yoga/sauna routine and see if the gentle, “give myself permission to take it slow” approach will work. My brother asked me how my health was the other day. I had to answer that I feel like an old woman with rheumatism. I ask myself, “do I give up now”, but then I argue back, “no way, girl, you are too young”. Keep at it. Thanks for being out there and reading my story. KMB


Susan 6 years ago

Has anyone heard of PMR reoccuring/coming back? I was diagnosed 2+ years ago and thought I had it licked. It's almost harder this time. I'm glad to find you all. Thanks.


Ali 6 years ago

Hi Kathie and poor you Susan

I have also come off the prednisone. The side affects for me ended up with me in hospital with out of control blood pressure. My head was always aching, my blood pressure went sky high, like you I had no taste or smell, I shook all the time so I couldn't take a photograph without it blurring and I would start sweating for no reason around my head and neck leaving me soaked through.

I was initially on 30mg and today I am officialy off them. The pain is awful especially in the mornings. I take Tremadol pain killers but everything hurts. I had a renal ultrasound when I was in hospital, and it hurt so much just putting the scanner on me it brought tears to my eyes. My jaws ache and my eyes hurt to blink. And like you its an all over body pain. I have gone back to work part time, but I am struggling. I need to work to pay my bills, but I don't know how much more I can do. Every day getting out of bed is a battle, but I do loosen up after about an hour. At least then I can walk around without hobbling.

I feel really let down by my doctor who has offered no other means to control this other than pain killers. I am supposed to see a consultant soon, but I don't know when. I worked hard at christmas and when I was not working I crawled into bed, but you can only stay in bed for so long as it hurts. I was a bit of a grouch, as all my family had come home, so many people, noise, chaos. Some days I just escaped to my room. Bah Humbug !!

I have total empathy for you and sometimes feel this site is the only way I can express how much it hurts and how deflating it can be. I am a tough person but this has floored me, and I am going to have to seriously rethink my career if it doesn't improve soon. My bosses are not going to put up with this, though they are supportive just now.

Susan that sounds terrible, it shouldn't come back, i have not heard of that, but then we are unique having this so young. i am worried that the pain in my jaws and eyelids could be Giant cell arteritis which can co incide with PMR.

Anyway tomorrow is another battle, stay in touch girls it helps to revisit this every now and then and know others understand. Ali


Kathie 6 years ago

Hi everyone: agrrrrr, Maria, I'm so sorry. It isn't fun. I'm now officially one week and two days off the prednisone and taking Meloxicam (Mobic). It's been a rough week, that's for sure - especially with the holidays. I hear you on this one, Maria. I was grateful for my family being here, but also very glad to be able to sit with the sleeping grand baby in the massage chair... The meloxicam seems to help. I still have this awful burning sensation on the tops of my shoulders, but now my arms are just tender. Sleeping is literally a pain. I'm much better when I'm moving. I'm thinking of doing a gentle cleanse this coming week to see if I can get out some of the holiday treats from my system. I do use the sauna every day, that helps. Massage, epson salt baths, green tea (or white) - not sure why, but it does seem to help. Yoga. Definitely. I look forward to my daily yoga. I almost wish I could just be in a continual phase of moving. I'm still having to take Excedrin during the day, Emtec at night, but I found that if I increased my zopiclone (sleep med) to two (dose is one or two at bedtime), I get a better sleep. I've been splitting the dose. Taking one at 8.45, trying to turn the light out at 11 or 11.15. Taking another when I wake up around 2am if I feel I can't get right back to sleep. It's helping. I can honestly say that today is better than yesterday, which is better than the day before. I'm feeling a bit of the swelling and water retention, and am pretty miffed still about having to work at weight loss yet again because of meds. I was very careful to ask the doctor and pharmacist about the side effects from meloxicam. I searched as much as I could online, and feel comfortable (so far) that it's going to work. Ask your doctor about the NSAIDs instead of prednisone. It really is a daily trial and error. I'm finding the exhaustion from fighting the pain almost worse than the pain.

Susan, I've heard people say it doesn't come back and others say it never goes away. That's a tough one. Hang in there - with Ali!

Happy New Year PMR buddies - maybe we'll find something this year! Watch the 2010 Olympics & you'll get to see the amazing province I live in :) KMB


Kathie 6 years ago

Okay - this is about the 2nd week in a row I've been up in the middle of the night. Don't let any of my old students know I've used this word, but this just sucks. (Nothing sucks in science - it's either a push or a pull...) I can't move. I sleep for about an hour and because I've stopped moving my arms, everything freezes up and I wake up not only in pain, but feeling like I'm paralyzed. Anyone having any good sleep tips? KMB


Kathie 6 years ago

Ali - I'm sorry I read the post wrong - I meant your name & said Maria's. Are you hanging in there? Are you better this week? K


Ali 6 years ago

Hi Kathie

Its ok I guessed it was for me. I am in so much pain now and really feel it in my cheeks and jaws. Smiling, talking, chewing hurts. I went back to work for two weeks just after christmas, I am a line manager in a large supermarket chain. I felt guilty being off at our busiest period. It was probably a bad idea going back whilst coming off the steroids. I am now steroid free but like you in so much pain. I am sure its worse than it was before. I cannot sleep and feel exhausted. They just do not understand at all at work and I feel so useless. Today I have not gone in as I couldn't move at all this morning. The other symptoms I have been having are not PMR related but I feel just awful. They think I have something called Cushings syndrome. I am getting tested for it, it is when your baby makes too much cortisol due to tumors on your pituitory and adrenal glands. Not malignant but it increases your weight, blood pressure and makes your bones very brittle. It became more apparent when I was on the steroids as it all increased dramaically which is why i ended up in hospital. They are now doing a series of tests now I am off the medication, but I am crippled with this PMR. I have decided to get signed off work for another month, as I think me struggling along is not doing anything for my career, nor my mental stability. I am in my third year of studying an advanced diploma in counselling and will be qualified by september all being well. I can look at alternative career options then, hopefully by then I will be properly diagnosed and be able to handle the pain. My daughter has another op at the end of january to see if her cancer has spread, we are hopeful it has not as she seems really well. But that will play a big factor in what I end up doing this year.

Do you suffer from pain in your jaw? I find it really noticeable now, every movement is uncomfortable.

Anyway enjoy your yoga, I'm glad it helps you. Let me know where your pain is located. My fingers hurt too.

Take care Ali


Kathie 6 years ago

Hi Ali: when does it all end? I almost think I concentrate too much on trying to figure all this stuff out that I forget to live. I'm trying as much as possible to be sure I move a bit every day. I went to a NHL Hockey game the other night in Vancouver. It was wonderful to feel alive (and it was a great game), but it was short lived. My pain right now is in the top of my shoulders, down the front of my arms to my wrists, and in my chest. I quit taking the meloxicam (mobric) today because I was having all the "seek medical help immediately" side effects (chest pains, blurred vision, trouble thinking straight, and more). I didn't go to the doctor because he would just say, "stop taking them, and try..." I think perhaps I'll "try" to go a week without anything and see if things improve. I do know after having chronic illness for over 13 years now, that these things come in cycles. You'd think I'd learn my lesson and stay off any extra meds for pain. Just stick to the essential for thyroid and blood pressure. I was almost off my blood pressure meds and my thyroid levels were finally stable BEFORE I started on the prednisone. Humphhh. Every day I work at raising my arms and hoping that tomorrow will be better. It would be nice to not have to fight the fatigue along with the pain. I felt so much better this past summer when I could get out and golf. I keep teasing my husband that I'm going to just book a holiday somewhere warm and sunny for a couple of weeks while they are doing home renos at our house. He's actually supportive, but suggests I go stay with one of his sisters in Vegas. He doesn't quite get the idea - I want to go to a wonderful get away - I'd particularly like to go to a retreat where I could golf, do yoga, be fed amazingly healthy foods, be counseled some on what I can do to have these same experiences at home, have daily massages, and restful sleep. AND come home feeling very 'zen'. Does anyone know where I could get that particular order???

I hope you don't have Cushings, Ali. I hope that a month off work without being on prednisone helps. I hope your daughter is okay. Please feel free to contact Maria and have her give you my personal email address. I do wonder if our online PMR chats are helping others? You asked if I had jaw pain, not really, but I do grind my teeth like crazy.

I also know what it's like to lose a hard earned career from having chronic illness - the cards stack against you. I remember sitting in a grad committee one day after I'd come back from another medical leave and have a colleague say to me, "you have alot of problems with your health don't you?" People just didn't get it. I tend to only go around people when I feel fairly well - they don't see the bad days. I was only able to stick it out about another year before resigning my professorship. Now I'm thankful to have a supportive family business and do what I can. I'm in the process of getting a publishing company up and going, but it is taking me probably 4 or 5x longer than it should, I just keep plugging away. Keep plugging away at each day, Ali and everyone else! It's nice to have this outlet and someone to just nod and say to themselves as they read these statements, "yeah, I know how you feel". Have a good night - I'm off to watch another hockey game, this one from my home sofa :) KMB


Kathie 6 years ago

Hey everyone - has anyone read Living with Polymyalgia by Sarah Haynes? Is it a viable resource? KMB


Becky 6 years ago

hello, I just found this site and read through almost all the postings. It's nice to hear about other people's experiences. However, reading them all at once is overwhelming and sad.

I do realize that I learned a lot from what you've all said and I really appreciate the time you've taken to write.

Someone mentioned denial. I think I'm still in denial. But,after reading your symptoms I think PMR is what I'm dealing with. I've never had anything even close to this.

I was diagnosed last August and started out on 25mg of Predisone. I didn't even know what Predisone was. I had

so much relief I couldn't believe it. My house was such a

mess and so dusty, and I could finally clean it. I'm 55 and I felt like I was 25 again.

I'm a professional pet sitter/dog walker. I have to get out

and walk everyday. I think this is what has kept me

going. Some days it is a real struggle, but I go.

One thing I wanted to share is I had a lot of neck pain and read about the original Tempurpedic pillow. Not the cheaper

ones but the original one from the Tempurpedic store. I got one and I do not have severe neck pain like I did before.

I take a hand full of supplements also and a pill once a week to keep from getting Osteoporous. Excuse my spelling.

I use to do Yoga but I can't get on my knees so I've avoided it. I've gained almost 20lb. I have headaches and mostly just really tired, but I push through the days, and like someone said about. If I go to bed I feel so much worse. However, there was once that I had to do that.

Something I learned from your postings that is really helpful is that reducing the dosage of Predisone causes the

symptoms to return. I went as low as 5 mg and I'm back upto

10mg. I have really had a struggle getting off. I'm going to try and go slower.

Thank you!


Becky 6 years ago

Me again. I just read my last posting and realized I didn't finish one of the sentences. I'm really struggling with my memory and holding on to thoughts. Does anyone else do that? I think it's the Predisone.

What I was going to say is it is a really struggle some days to get out and do my walks but when I finish walking that is the best feeling I have all day. If I didn't HAVE to do it I wouldn't, but the exercise is the best thing I am convinced.

Does anyone else struggle with severe emotional swings?

That may be from living with constant pain and mental fogginess.

My symptoms came on suddenly after I had knee surgery.

I was using my arm muscles to the extreme, and I was under a lot of emotional stress with a sister dying from cancer.

My GP ran every test she could think of on me. She said she had tests done that she had never had done before. Finally she sent me to a Rheum. and that was when I got on

Predisone. The Rheum said on the first visit that she thought I had PMR.

I am still trying to figure out why I got this dis-ease in the first place. Does it really ever go away???


Kathie 6 years ago

Hi Becky - welcome to our postings. It is rather sad reading through these postings all at once, I agree; however, the positive thing is we have this blog thanks to Maria :) It also helps to know you aren't the only one out there who has the crazy pain, the feeling that every day is a "push through", and has all the resultant side effects from the 'cure'. I just finished writing six pages in my journal about how I've felt the last two weeks since going off prednisone. It's not a pretty picture. My doctor wants me to go back on, but I just can't go there. I picked up a new supplement from my health food store called "myalgia". We'll see how that goes. The claims are it works great, but not for the first 48 hours. My doctor said I could try it for two weeks, have my blood work done again, but if my CRP levels sky rocket, we'll have to do something. He's sending me back to a different rheumatologist. I have to travel to Vancouver to get in within a decent time frame, but that's okay - I have a grand daughter there & it's worth the trip (I live on Vancouver Island & get to take an hour and a half ferry ride to the mainland).

I am SO tempted to go to a yoga retreat I read about in Yoga+. It's at the Himalayan Institute in Honesdale, PA. They have one called Pancha Karma where you go for four days and meet with an Ayurvedic doctor and more. Maria - do you know anything about this institute or these retreats? Are they worth checking out? I'd really like to find this exact thing on the West Coast. Do you know any more like it? Thanks.

Becky, thanks for the idea for the pillow. I've found those pillows heavy in the past, but I'll check this one out. I often wonder if my bed is a problem (I have a high end memory foam bed) and change my pillow as often as I can. Night times are especially difficult which results in very bad days. I think my husband is ready to throw me off a cliff. Usually, my positive attitude toward life (this is okay, it's just something I have, tomorrow is going to be better, just do something today - even if it's just emptying the garbage, doing yoga, taking a shower, calling a friend or family member) gets me through it, but I've noticed the emotional swings this week. Crazy - we really don't know why we get this. It is a sister to my chronic fatigue and fibromyalgia, I'm sure. Be gentle with yourself. I use a supplement called "learning aid" from the health food store for the fog. It helps. It's what they give children with ADHD.

Ali - are you hanging in there? Susan, Gina, Sally and others, have you found answers to your questions? Thanks again to Maria for hosting this blog and getting us together. Do something gentle for yourself today. KMB


Becky 6 years ago

Katie, Gosh, thanks for writing. I feel so...I don't know the word. It's just so nice not to feel so alone. I am so encouraged that you are off Predisone. You may be breaking the trail for some of the rest of us. I, too, am determined to get off it. I am going to start working with a Macrobiotic counselor over Skype and go on a macrobiotic diet and see if that helps me. One thing that I can't tolerate at all is stress. The least little thing throws me into a tail spin.

There needs to be a support group for husbands.

I want to thank you Marie for starting this...is it a blog?

What a wonderful thing to do for us all. There just isn't much out there for support.

I will keep you all posted on the Macrobiotic diet. I have also stopped eating anything with gluton in it. I think I

feel a little better, but it's too soon to tell.

Best to you all out there.

Becky


Ali 6 years ago

Hi Kathy, Becky and everyone else

Thank you for keeping me sane. Work has been a no go for me. Its just impossible. Yesterday I took my daughters and my grand daughter to a mall in Manchester for the sales. I pushed the pram using it as my own zimmer frame. I managed half and hour then I went and sat in the car. I told the kids not to rush and to carry on as I now keep a lot of reading material in the car for when this happens. I can study quite comfortably and still feel I am doing something useful. Today i thought it was a bit better so i drove down to the bank. I had a five minute walk from where I parked and was hobbling all the way. I have gone back to painting as I find it relaxes me. I used to love to cook and am a qualified chef, however I cannot stand for any length of time, and cannot lift pots. My other grand daughter(2) came last weednesday. She loves to paint and I have all sorts of painting and art materials for her. I stand over her helping as she works away getting paint, glue, glitter and feathers everywhere. She loves it and afterwards i carry her to the bathroom for a good hose down. Then make her lunch before I take her home. I was incapacitated all day thursday because of he visit. Yes I do get very snappy, irritated that I can't do things then snappy with the girls when they do it for me. No one ever does it as good as me. I really have to stop it. I used to be as strong as an ox, and full of energy.. Anyway enough of my bleating, this self pity is also getting a bit ridiculous. i haven't been ablt to get to uni for a couple of weeks as we have been snowed in. I am looking forward to going on wednesday evening. My problem is sitting on a hard chair for four and a half hours, but they are very understanding. They should be, we are all trainee counsellors. Kathy I would love to be able to cntact you outside the blog, but I am not sure how I would get my email address to you . Technology is not my bag i'm afraid. I have cousins who live in Vancouver and I have been over to the island. its a beautiful part of the world. I am in the UK in a small village in the peak district, Manchester is the closest city.

Hang in there I also have been totally off the prednislone for two weeks now. Am waiting to go in for tests for cushing's. I forgot how bad the pain was until I was off these steroid completely. Its such a horrible choice, pain or feeling rubbish with steroids.

Becky do let us know how your diets work out. i am taking Devil's Claw and selenium on top of fish oil, castor oil, garlic and cod liver oil. If anything i am well lubricated, but I dont see any difference.

Good luck girls be in touch soon with my nnext moan. Love hearing yours Ali x


Kathie 6 years ago

Hi everyone - please feel free to email me - to do so, you'll need to go through Maria and she will give you my email address. To do this, click on "contact damesfly" above on the right of the blog. I look forward to hearing from you.

Becky - hang in there with Ali. Ali, I love that you paint with your grand daughter! The feathers and hosing off sound glorious!

My mother-in-law passed away on Saturday night after many years of suffering. She was only 73, and really could've gone years before. What hurts me the most is feeling how my loved ones are hurting (my husband and his sisters). I am so relieved she is released from her body and her spirit is free and painfree. Watching her for so many years led me to have a living will... that's a completely different story, but grief in the family is palpitable.

As for my PMR - I'm figthing, not very well, very fast, or painlessly. I can't throw the covers on or off me at night, or lift my arms past waist height without pain, but I'm determined to beat this. I'm rather concerned about having to travel this week. After two days of air flight searches, I was able to work out what seems to be an amicable schedule for getting on/off the island, from Vancouver to Salt Lake, and back again with having either a son or my husband with me. There are no carry on luggage permissions, so after check-in, it should be fairly easy. I love that I have an ipod that combines books, computers, games, music all in one light, very light, package.

Becky - please keep us posted on your diet. I am seriously considering Ayurvedic medicine and would like any comments or experiences from others. Raw foods and fruits are helpful with the inflammation.

I have much to do, so that's it for today. Thanks for the support. KMB


Becky 6 years ago

Hi everyone,

I have been too busy to check this site until now.

I feel like I am not suffering as much as some of you, but I'm

on 9 mg of Predisone. I'm decreasing slowly. I asked my doctor about Predisone. I guess it is just to handle the pain. It does nothing to help PMR go away. The good news is that PMR is suppose to go away after a year or two.

Does anyone else (while on Predisone) really struggle with being irritable and emotional? Some days I just want to crawl in a cave and not talk to anyone. It's really hard.

I seem to rub my friend wrong. I haven't talked to my sister since before Christmas. I have to be really careful with my business clients. I really feel alienated. I am noticing some pain in my shoulders and neck this week, but I was so physically busy I'm wondering if that has contributed.

I start working with the Macrobiotic counselor tomorrow. I'm a bit worried that the diet is going to be really hard.

I'll try to do it and see if it helps me then pass it on to you all. It is a very pure diet and I love my English Tea and chocolate.

Ali, I have a daughter and two granddaughter that live in Brighton, England. My daughter married a British man she met in College and moved over. She has since divorced but

is staying in England.

It's been 3 years since I've seen them. I can't face flying

that far now. Anyway, it was fun to hear about you and your grandchildren in England.

Best to you all,

Becky


Kathie 6 years ago

Hello everyone - I worked at a posting earlier, but the site was up for maintenance and I lost the post... at any rate, I'm back from the funeral and it's been a difficult ten days. I was supposed to stay down with my husband for four more days to help get my father-in-law situated in another state with one of the sisters, but I just couldn't take being away from home anymore. I couldn't take anymore people, noise, smells, etc. Security was a nightmare in the Vancouver airport and traveling, no sleep, being with grieving people, and having my own grief knowing our life may drastically change if my husband brings his father here to live - well, that with my pain was all a bit much.

Just so you know today marks the one month mark of being off prednisone. I wish I could say things are better, but they really aren't. I'm gradually getting over the side effects of the prednisone - no more bruising, blurred vision, puffy face, but I'm still struggling with muscle weakness and the residual weight gain. I'm also extremely fatigued, but that could be the CFS and fighting all the external forces.

My PMR symptoms are back with a vengeance. I have pain from the tops of my shoulders, down to my hands, across my chest, down my right leg, and it went into my hip when I was flying. Mornings are the worst - I think I've said that so many times that I feel like a broken record. Does anyone have any suggestions on how to get going a bit better in the morning? I've tried stretching, light yoga, hot showers, hut tub, sauna, massage. What works best is sauna, massage, yoga, hot tub, rest, but this takes hours and I need to be up and moving more. Plus, I would really like a bit of a life. It's sunny today - I should be out golfing! I have to admit, I'm gradually losing my positive outlook and feeling depression sneaking in around me.

My massage therapist just recommended a Chinese naturopath. I have an appointment for Thursday. I'll keep you posted. In the meantime, if any one has any other suggestions on alternative medications or cures for PMR, please, please let me know. Maria - do you know anything about the company that advertises 100% cure for PMR on the right hand site of your blog?

Becky - I did feel irritable and not myself on prednisone, but not as much as I did when I had to take neurontin a few years back after I'd ruptured two discs in my back. That was nasty. I was mean to people, I snapped, I couldn't think straight, I couldn't put two words together to form a sentence. Luckily, I figured it out and came off, and while coming off that drug was very hard, coming off prednisone has been harder. A rheumatologist suggested Lyrica (which is a cousin drug to neurontin) and I immediately said, "no". Then he suggested Cymbalta (which is an antidepressant). Some of my previous posts discuss how I feel about antidepressants and how they tried to use them with my original CFS/FMS. There has to be an alternative - there has to be an answer to this. I am relieved that so many of you found an answer with prednisone. I just hope those of us who can't use prednisone can figure this out before we lose much more of our daily quality of life. Thanks for being there once again, PMR buddies. KMB


Ali 6 years ago

Hi Becky and Kathie

Kathie I do feel for you. I had my daughter and grand daughter live with me for three months over the christmas period. That was difficult enough, trying to cope with a small baby. I can't imagine having to cope with an elderly person when feeling like this.

Trying to be positive is very hard and there was a moment last week when I could have easily gone back on the prednisone. My right leg was excrutiating, and I just couldn't walk for two days. Like you Becky I was so snappy, everyone drove me mad and I eventualy hobbled out to my car and drove to a supermayket car park and sat and read in peace for three hours. I find my car seat the most comfortable place to sit. I lost the will to live that day. I really hit rock bottom, but I do that occasionaly when life gets too much, and then I have this amazing survival instinct that kicks in and kicks my ass hard. I get a grip and realise that its not going to beat me.

So I get pro active....guess what today I am going to buy a walking stick. A cool fun one and if I can't find one thats fun i will paint it so it is. I find walking very hard, even a short distance really hurts my right leg and lower back. My face swelling has gone down now and like you Kathie I have been off the steroids for just under four weeks now. My jaws have stopped aching so it must have been them. I see a consultant next week, i am pretty sure I do not have cushings syndrome, but I think all these problems were a side effect of the steroids. I am going to have to rethink my career and look for a desk bound job. However even at Uni on wednesday evening I found it hard to sit on a wooden chair for four hours. I may need a neck brace to help with that, I dont want to give up my course.

Hang in there girls, maybe when we all get better we could do an inca trail treck or something as a celebration.

Becky I know Brighton really well as that was where my daughter was living before she came up to me. My grand daughter was in the East Sussex hospital for three months last year as she was only 1lb 10oz when she was born. I spent a lot of time in Brighton as a result.

Just another thing. I think hearing how hard you find it in the morning Kathie actually helps me deal with it also, so I will return the favour and hope it works. I wake around 4am when the pain in my lower back is too much. I roll over with difficulty into so many different positions, desperate to go back to sleep but knowing its impossible as the pain is now too much. I get up very painfully, sit at edge of bed for a while before I get the will to stand. I manage then hobble painfully into the bathroom to release my bladder. I turn on the shower and stand in hot water for a few minutes. Then I get dressed slowly. Even now as i write I still have to put my socks on. I usually leave them untl the pain killers have kicked in a bit. I take the pain killers then either switch on TV for an hour or go on to the computer. I eventually am able to move with much less pain. However I wonder exactly what our pain thresh hold must be like now. Anyway your not alone hun, as much as I sympathise, its good to now I am not alone either. take care girls until next time Ali x


Becky 6 years ago

Hi,

I remember what I felt like before taking Predisone and it sounds like what you just described Ali. Can I ask how long

you took Predisone.

I am down to 9mg and I have a little discomfort but it's to too bad.

I am really hopeful about healing through a Macrobiotic diet. I am going to a week long class in April, but I'm working with a counselor via internet now. I've gotten off caffeine, dairy, and mostly sugar. I think I am gluten intolerant. If I eat gluten my symptoms get a lot worse.

The counselor I'm working with had cancer. It went into remission from Chemo, but she was told it would come back.

She went on a Macrobiotic diet and it didn't come back.

Anyway, its not an easy diet, but if it works it's worth it.

Ali, I love visiting Brighton. It is so different from Alaska. My daughter and I are a bit estranged so it's hard, but I keep trying to mend the fence.

I'll keep you posted on my progress. It may be a month before I know.

One last question. Why get off the Predisone and take Pain pills instead?

Best to all,

Becky


ali 6 years ago

Hi Becky

The prednisone was like a miricle when I first took it. But within two weeks I started to feel really ill. My heart was pumping like mad and I ended up in hospital with chest pains and a blood pressure of 240 over 171. I thought I was dying.

I reduced the dose but felt like I had flu all the time. I would get horrendous sweats, shaking and dizzyness due to blood pressure they could not control.

I came off the prednisone so they could do tests and it looks like I have Cushings disease. I have two more overnight stays in hospital this month to confirm. My cortisol count is very low which means my body is not making its natural steroid. The steroids had a real adverse effect because of this. It is probably due to a tumor on my pituitory gland which is what these tests will establish. My weight gain has been huge but all in my mid rift and neck area which is part of this condition. I also get exhausted, cannot work, have high blood pressure and terrible backache. Along with bruising and shaking.

Once diagnosis is confirmed then the treatment starts and I cannot wait. I just want to walk my dog, or go for a swim, or anything other than chair/bed/chair/bed.

The pain from the polymyalgia obviously makes this so much worse, but I cannot take anything but pain killers until these tests are over or the results will be distorted.

I have travelled a lot, but Alaska is still somewhere i have yet to visit. It looks wonderful

good luck with the diet Ali x


Kathie 6 years ago

Hi everyone. Ali, come to BC - we totally should meet up AND I like the Inca trip idea. Well girls (and guys), I definitely think going on the prednisone in the beginning was a huge mistake. But, not only was the prednisone a mistake, my health path for years has gone done the wrong road. I am hopeful for the first time in a long time. My massage therapist recommended a different naturopath for me. She has several clients with CFS/FMS (I'm the only one with PMR) and they've all had amazing results with the guy. I was skeptic at first; I've tried naturopathic doctors before and found one of two things: either they just wanted to talk me me about science and my career and how to write (I have a PhD and write alot); or, they would want to sell me all their products and have me coming back every two or three days for expensive visits NOT covered by our MSP or extended medical programmes. I trust my massage therapist and decided to give this a shot. Man, was I ever impressed. This guy is NOT out to just take your money or sell you his products, he really is all about health, taking charge of your health, and controlling inflammation and other issues through proper diet for your body. He does vega testing. I checked it out thoroughly and understand the science behind the test, so I think I can vouch for the testing at probably a 99% confidence level. Lots of medical research to back it up. So, I went for it. It determines what level your body systems are working at - ie my thyroid is only working at 60% of it's capability, my immune system at 70%, and there were a very other things it picked up on also - like extreme sensitivities to molds (which I knew before) and a few others. After the body systems were tested, my medicines and supplements were tested. Again, I could explain this scientifically to you if you need me to, but suffice it to say, there was quite a long list of foods that I'm highly sensitive to right now - some were a surprise, but most not. I'd taken in a bag full of meds and supplements, it was almost embarrassing. The good thing was when the Dr. analyzed my results, he was able to safely take away 3/4 of the things I was taking, recommend only 5 (not 25) things from the health food store (certain brands, dosages, etc.). Then he told me to buy the book The Inflammation Free Diet and follow it for a month. Come back in a month. Not come back in two days, come back in a month. Re-evaluate and if things are looking better, well, you're pretty much done. Sounds simple, eh? Maybe, but I have lots of studying to do to figure out how to rework my foods - stay away from the ones I shouldn't, but still eat well. The good news is I was able to go to pilates class last night, golf 18 holes today, and curl. I'm tired, am walking slowly, not sure what tomorrow will bring, but hey - I did all those things today.

The key with this guy was that he wasn't just treating 'symptoms'. He's really looking for the underlying cause of these problems and going toward that goal. Since PMR is all inflammation, the Anti-inflammatory foods rather than drugs is his choice. I've gone four days without some of the drugs, all week with no sugar or wheat. I'm tired, I can hardly move tonight after my physically demanding day, but I finally feel like I'm coming up for water. The key thing from the book is that alot of these issues we have like blood pressure, dementia, long range into more serious issues could all be controlled with eating proper foods. Very interesting. I'll keep you posted. Looking forward to more good discussions. Be kind to yourselves - be sure to watch the Olympics next week so you can see my gorgeous province. Chao. KMB


Kathie 6 years ago

Okay - that was supposed to be come up for air. Unfortunately, my active day is now being paid for in the middle of the night. It seems my body needs to get up and move around every two hours. Ali, I'm thinking about that hot shower, but don't want to wake up the rest of the family... oh well. Thanks for being around everyone - it's morning where Ali is... Keep hanging in there. Chao. KMB


Becky 6 years ago

Hello everyone and thank you Kathie for sharing your experience with the new food plan. I am with you. I'm trying to get on a Macrobiotic diet. If I eat wheat or certain foods I can tell a huge difference. The problem is I crave a lot of things that I shouldn't eat.

Can anyone tell me how to get off Predisone. I started at 25 mg and slowly got down to 10mg without too much trouble. I took 9mg for a week then I started taking 8mg one day and 9mg the next, to continue that way for a week then drop down to 8mg, and so forth. I feel bad today. My shoulders ache my hips ache, and my hands hurt.

I'm very discouraged and don't know whether to keep at it or

go back to 10 mg Predisone. I have an appointment with the Rheumatologist tomorrow and I know he'll just say keeping taking the Predisone, spend 5 minutes with me and charge $350 dollars to my insurance.

It's discouraging. Maybe Kathie's on to something. I feel like she is. Please keep us posted on what you learn and thank you very much!!!


Becky 6 years ago

Ali, I missed reading your comment before. I'm so sorry about your discomfort. I never had any idea what it was like to live with constant pain until now and it gives me a lot of compassion for people. I really hope the doctors can help you. I really feel like we are reacting to things in our diets and/or environments. It will be interesting to see how Kathie does with her new diet.

It help me to be more disciplined to stay on my diet as well. Maybe if it helps me it can help you and others too.

Best to you,

Becky

PS Alaska is a beautiful, wild place. I love living here.

However, it was 6 degrees this morning and I had 7 dogs to walk. The cold is harder now.


Kathie 6 years ago

Hello everyone - I suppose it is time for an update on the ongoing saga of my health. Becky - thanks for the encouragement. You are my neighbour! Cold is hard, I agree. I've resorted to the wheat germ filled bags that you heat in the microwave, heating pads, the sauna, and hot tubs for more heat. We are having warm temps outside, too (not the best for the Olympics), but I still have to snuggle warmly throughout the day. As soon as I get even the little bit cold, I'm done.

I've resorted to weekly expensive massages for about a month to help get through the drastic changes. My RMT is wonderful, soothing, comforting, and encouraging. I lamented at not feeling better yet, but she helped me to realize that I've made more than just a drastic change for my body - I've stopped 3/4 of the meds and supplements I was taking, sugar completely, breads, yeasts, and most high inflammatory foods. All this on top of trying to get over the side effects of prednisone. She said to expect to feel horribly, and don't be surprised at hives, breakouts, nausea, overall weakness, fatigue, headaches and more lasting for at least two or three weeks. I would like it if I noticed getting better every day, but that is not quite happening yet. I DID, however, have a few moments of zero pain anywhere yesterday. It was amazing. I think it will happen.

I am following three major things right now - the food/medicine/supplements testing done by the doctor, The Inflammation Free Diet Book, and Tired of Being Tired Book (regarding adrenal failure). I am slowly beginning to realize that the PMR with the previous CFS/FMS are definitely symptoms of adrenal failure from mistakes I made in my 20s and 30s while firmly routed in my type A personality. Hope is sometimes fleeting, but as long as the people around me continue to have patience with what I'm going through, my mental state is much better. I DO have to gently remind them everyday what is happening. I think the hardest thing is telling people that you can't do something. My pilates instructor, a wonderful woman my age who's never had children NOR health problems, doesn't understand taking it easy. She says, "push through the pain", but that is the worst thing to do according to my RMT, the books, and naturopath. Thank goodness for wise voices.

Becky - to get off prednisone, you need to decide what you are willing to live with. I know what you mean about feeling good at 10mg. I think I could've stayed there, but the side effects were just to overwhelming and I wasn't getting any benefits. I went from 10mg for five days, 9 mg for five days, 8 mg for five days, to 7.5 for three days, 5 mg for three days, 2.5 for three days, and off. I think I documented the run earlier in one of the previous posts. My mistake was trying to take meloxicam to fight the pain & had really negative side effects from that drug, also. I'm realizing that I should've done this dietary and med change sooner. In Tired of Being Tired, the author says Eat, Rest, Rejuvenate. Exercise less. What I like the most about the books I'm reading and the people I'm seeing is the degree of professionalism, expertise, and experience. They are all health professionals dedicated to helping me get better naturally and gently.

I know this was long - today is a nauseous day, there are house renovations happening at my house all week this week and next; in one way it is a pain, but in another it's a blessing because I don't have much cleaning to do. I am struggling with laundry and basic tasks, but am looking forward to just "being". I wasn't able to golf on Monday with my sweetheart - that made me sad, but I just keep trying to keep my eye on the prize of being ready for a summer of healthy living.

Hang in there everyone - sharing our stories are good. Thank you so much. Chao. KMB

PS - did you know that cold water fish are the best foods to have to reduce inflammation? Amazing.


Ali 6 years ago

Hallo girls

really would like to know the author of 'Tired of being Tired' Kathie. that statement pretty much sums me up just now.

I cannot believe you could manage 18 holes and curling. You are so much braver than me. I live in a town house, which means lots of stairs to different floors. Putting laundrey away is my biggest nightmare, and I wish i could get my son to help more. I asked him for three days to bring down his laundrey basket so I could wash it. it was overflowing. He said he would, then everyday ran out to school forgetting to do it. So then I get irritated and eventually snap at him, to which he respomds 'oh its the pain thats making you like this' and dismisses it. With the other kids I would have marched them to their room and stood over them whilst they sorted their laundry and carried it down. They would not have got away with it. I have not the energy nor the inclination to argue with him, and truth be told he does do what he is told. He is just so disorganised that if I am not over him all the time he forgets. And today I have just finished all the laundrey and my daughter has phoned to say her washing machine has broken down and can she bring all her stuff and the babies stuff tomorrow to wash. I have a friend from work coming in the morning for coffee and I am trying to manouvere the vacumm cleaner up and down the stairs, and its killing me. 18 holes on a golf course would kill me. I cannot stand for that long without my lower back quitting.

I have a cognitive behavioral workshop on Sunday and am dreading having to sit in these hard chairs for the whole day. I hope I make it through without wimping out.

I am concerned about my daughter just now. They have detected white blood cells and blood in her urine. It was her cancer check, and they were concerned that the cancer had spread to her bladder back when she had the surgery to remove the tumor. The margins were very close. Hopefully the blood will be due to all the surgeries she has had in this last year, (4 in total), but it is still a worry.

Anyway let me kmow how the diet works its all fascinating stuff. Ali x


Andi 6 years ago

Dear ladies,

I was in great pain which continued to escalate over 18 months. Doing internet research, I discovered the cause - PMR. I was 59 at the time. I found a rheumatologist who hated to prescribe Pred. so he put me on methotrexate. It had NO effect at all. After 6 more months of deteriorating shoulder and hip joints, he put me on 10 mg. and within 48 hours I could do cartwheels. I am at 4 mg. a day now after over a year and that's where I intend to stay. I have no side-effects, at least that I feel, on that low a dose. I figure that not moving, being a couch person all day, was far more dangerous to my 61 year-old body than the low-dose Pred. I will periodically try to reduce it to see if the PMR subsides. At 3, I cannot sleep. That is my dividing line. Meanwhile, I play 7 hours of tennis a week and have a good attitude toward life, like I used to. BTW - the 18 months before I found out what I had were the worse time of my life. I felt 105 years old. I went from putting my palms on the floor to not being able to touch my knees. I had been in yoga practice for 10 years and stopped going. It was horrid and I was the only one who could come up with the diagnosis, primarily I suppose because I was "too young" to have the disease. I was furious with the medical profession in general, making me suffer for so long when Pred. took it all away in a couple of days. I am interested to hear that one of you has this disease at 43. I am going to a D.O. who thinks that she can help me. She is running many tests to see why my immune system is on the attack. I have had some nasty immune symptoms (rashes and digestive problems) and I think she may be on to something. There has to be a reason why the body turns and attacks itself. Most M.D.s aren't interested in pursuing it. Good luck to you all.


Ali 6 years ago

Hey my daughters tests are ok. I managed all day at college on Sunday and my house is still clean. Good times

Ali x


anniec1 6 years ago

I am a 55 year old physiotherapist and developed the painful symptoms of PMR 5 days after a knee arthroscopy, because my bloods were normal with no inflammatory markers it took 5 months to put me on pred and confirm a diagnosis of PMR. I was started on 20 mg , but have just had my first reduction to 17.5 mg and some pain and stiffness has returned, but not to the debilitating level of the first 5 months , life was not worth living then. Any advice please on reductions ? I do not like the side effects of pred but anything is better than trying to function on NSAIDS and tramadol !!I would rather have gone through childbirth every day than re live those undiagnosed 5 months. Fit and active to a helpless cripple overnight!! Did anyone else have no raised ESR and CRP levels ?I do find I have good and bad days , but they have no correlation to the previous day's activity . I know now that the word "pain" is a useless word , there were so many different types of pain I feel like writing a book to expand peoples knowledge of the word pain , as fellow suffers can fully understand , the pain of PMR is unique , burning , hot and often explosive followed by intense smouldering , nothing like a twisted ankle or torn muscle


Ali 6 years ago

Hi Andi and Anniec and welcome to the club

Firstly I don't really know what to advise in coming off the prednisone. I had such horrendous side affects that I was sure it was the best thing to do. However i am two months down the line from completely coming off them and I am in agony most days. The pain is so disabilitating that I am doing virtually nothing and getting more and more frustrated. My ESR levels were also not high and it has lead to a battle of words between my consultant and my GP whp disagree on diagnosis. One saying Fybromtalgia the other PMR. The truth is Prednisone did work, it was like a miricle and I went from struggling down the stairs to running up them in 48 hours. Why come off it? Two weeks later I ended up in hospital with uncontrollable blood pressure, dizzyness, and felt utterly dreadful, like I had flu. I have to keep reminding myself how bad it was, as I pass by the prednisone every morning for my pain killers.

Miserable is the only word I can describe my days at the moment and if I did not have a uni course to study for i would feel totally worthless. So if you can stay on the pred without serious side effects, stay on them. the alternative is much worse. I have heard that Fybromyalgia does not respond to Prednisone, and that is why my GP is so adament that I have PMR. I don't care what they call it, it hurts, it's exhausting and for a previously active person who was completely in control of her own life, its devastating.

DO NOT go back to this if you can help it. If I could find any reassurance that they could medicate me so I would not suffer the side effects of the pred, I would take them straight away.

Anyway good luck ladies Ali


LinnieM52 profile image

LinnieM52 6 years ago from Brooklyn, USA

I have had PMR going on four years now. WHen I first was diagnosed I could barely walk and thought I had something quite serious. My sed rate was 40 (normally it is 7 to 13) and I was placed on 20 mg. of prednisone. Felt like a new person until I got down to 12 mg. Then I had to go back up again to 15 for several weeks and only go down one mg. per month. When I got downto 3mg, the pain came back, so up again to 6mg. This happened again recently, am back on 6mg of the prednisone but the pain continues. This time the pain is in myhands and wrists as well as the upper arms. Some fingrs get swollen. I have not read much about hand invovement until recently and on this hub. Getting depressed now because I am a writer, and with this kind of intense pain inmyfingers and writst, it is difficult to write and to do my chores, such as food shopping and cooking. AM on a healthydiet - no sugar, red meat, dairy or wheat. I am so done with PMR!!! I might start a PMR Support hub. Inmy case, people just don't realize how painful and debilitating this can be - it is not a-mind-over-matter situation.


Kathie 6 years ago

Hello everyone - I figured I'd better check in and let you know of my progress, or lack thereof, with the diet and meds change.

First, I'll answer a few questions: Ali (I am SO happy things are better with your daughter, your house is clean, and that weekend went well, but sorry to see it's still so bad for you). The authors of Tired of Being Tired (2001) are Jesse Lynn Hanley, MD, and Nancy Deville. The author of The Inflammation Free Diet Plan (2006) is Monica Renagel. I found another book on Amazon the other day – I haven’t bought it yet – it was too depressing to read the summaries. It was basically a woman’s journal entries of her four-year battle with PMR. It’s called: My Four-Year Pmr & Prednisone Challenge: How Amrit Yoga Helped Me Overcome PMR (Polymyalgia Rheumatica) And Helped Me Deal With The Side Effects And Withdrawal Symptoms Of Prednisone Therapy by Audrey Pearson (Paperback - Mar. 24, 2009). I’m thinking of getting it, but when I told my husband about it he said, “you live this, why would you want to read about it?” I thought of all of you & it just made me very sad that we all live with this.

Secondly: prednisone reduction. Please see previous posts of mine for how I came off prednisone. As I continue to research it is important to note that MANY people have had good results with prednisone for PMR - even to the point of experiencing a cure. I did not. The side effects and resulting Adrenal failure from taking the drug have been devastating and more than debilitating.

What's happening now: as you know I began seeing a naturopath about five weeks ago in search of alternative medications to PMR. His feelings were that the problem was deeper than PMR, deeper than the thyroid, and down to the Adrenal level. He began treatment by drastically changing my already excellent diet, but took out all red meat, any sugar, all grains (except rice, corn, and spelt), many of the common vegetables (carrots, tomatoes, lettuce), only a couple of fruits (raspberries and pineapple), and many of the vitamin supplements I was taking. One of his major concerns was that I had what is called “leaky gut syndrome” where nutrients are not absorbed in the bowels. This is a common complaint in most people with FMS. He has me taking about 32 oz of Aloe Vera juice and taking my essential oils as liquid and not pills. Evidently, this is working because my fingernails are a bright clear pink colour and very hard as well as the whites of my eyes being clear and white. For my diet, I followed the Inflammation Free Diet plan – ate mostly fish and any food that had a positive value and added a tablespoon of (yummy) cod liver oil every day. My hair is still dry, my energy levels drastically low, my pain levels stupidly high, and my spirits pretty low. The doctor dropped my thyroid medicine from 150mcg to 100mcg – this was too much, too fast. Now in addition to adrenal failure, my thyroid symptoms hit with a reprisal, too. Hence the dry hair, muscle pain and fatigue on top of muscle pain and fatigue, and more.

I’ve gone through a month of not being able to move – yes Ali, I was only able to golf once for nine holes and only curled twice the entire month and had to skip and not sweep. It was, and still is, very sad. I’ve had to move to our guest bedroom to sleep at night because the bed is harder. My bed is a memory foam bed – I love my bed – but I would sink in the bed, not be able to move or turn over, and my shoulder and arm pain was worse. I literally saw every hour on the hour on the clock all through the night. Now, I can make it for about an hour and a half, wake up, turn over and go back to sleep. I was thrilled to have a night where I didn’t see the clock for three hours! While I would love to say I’m getting more restorative sleep, it just isn’t happening yet. I still have to get up, walk around, stretch, use heat packs, and lots of meditation and breathing to get some rest.

Right now, I can honestly say the PMR is back with a vengeance. My right knee is swollen twice the normal size, my hips hurt, my arms and shoulders burn. I fight a migraine every day and resort to NSAIDs more than I would like.

Here’s what I’m doing:

Meds - I take 5 mg of endocet each night before bed, but will only take one; so five hours later, I take two T3s and two Robaxacet (muscle relaxants). That’s about all that will take away the edge. I end up taking Excedrin in the morning, but back on the muscle relaxants by late afternoon. I’ve been able to stretch it some days to early evening. I researched alternative meds for PMR and found a site that compares the alternatives: polymyalgiarheumatica-options.com. I’ve sent the list of ingredients from the first two to my ND to see what he thinks before I buy something from online. I’ll keep you posted on what I find. In the meantime, I had blood work done this week and have made an appointment for my regular MD for next Wednesday. Let’s see if there is some improvement before then and I go in and beg for something. The only other traditional medicine drugs for PMR that I’ve been able to find are Imuran (asathipriopine) or Methotrexate (I’d love feedback from anyone whose tried these). I’m quite reluctant to try these after I read the list of possible side effects. I’ve also upped my thyroid medicine to 125mcg, but I’m thinking I may just need to go back to the 150mcg. I have a feeling the thyroid blood work was skewed because of the side effects of the prednisone.

Food - Even though I’m eating very well, I feel like I’m starving – mostly that there is just something my body is simply not getting that it needs. Perhaps it is still detoxing from the things I’ve stopped taking? I’m not sure. I did break down and have some steak the other night – I paid for it the next day. The ND said I could have red meat as long as it was grass fed; he specifically mentioned buffalo, but for now, I’m sticking to lots of fish. My husband does our cooking – thank goodness. If he didn’t, I’m sure I wouldn’t eat at all. I tried to cook for my son’s birthday on Tuesday and ended up making a mess of a dish that is my one and only specialty. Go figure.

Exercise – I’m still trying to do Pilates. I make it to class for an average of once a week. My Pilates instructor is a good friend and quite encouraging. She just phoned to tell me to come and just lie on my mat and enjoy being with people. Very good advice. She is also a personal trainer and suggested walking and weight bearing exercise is probably not a good idea while my knee is so swollen. Usually yoga is my “go to” exercise, but getting up and down off the floor is problematic right now. At least with Pilates I can get down on the floor and stay there through most of the class. We’ll see how it goes tonight.

Here’s what I want: I want what all of you want. I want to have a normal day. I want to wake up and feel like I have something to look forward to. I want to write, golf, hike, curl, shop, enjoy every moment. Mostly right now – I want to see improvement. KMB


anniec 6 years ago

Hi all,

I am now better ,ironically I was worse on my 1st steroid drop from 20mg to 17.5 than I am now on 15 mg but still a long way to go !!, I still have some pain and stiffness in my shoulders , but nothing like it was before!! I can function , don't think I would like to play tennis yet though !! but from all your comments I am still at early days state and could have some disapointments in store. Thank you all for support, this disease is horrible and unfair, I supose like many others , at least this one does not destroy our joints permentley which others can do .... one must try and look on the positive side as it is too easy to become negative.

Another spring is coming, with it another year, and I hope for all of us it will be a better one that we can all get some enjoyment back from life instead of just existing in a world of imobility and pain.

I still have from time to time a lot of fatigue , which comes out of the blue with no links to the prevoius day's activity ? Does anyone else find that ? I never used to fall asleep on the sofa in the evenings but I can do now from time to time !!Also sex life ....no drive at all , is anyone else the same?I have found that all of the things, from the disease itself and the side effects of pred have added to the pressure of coping with PMR, which is bad enough anyway to say the least !!I have a wonderful GP which I am very thankful for, not that I can see him because of our local appointment system , but I can always contact him by phone !!which has been good


Ali 6 years ago

Hallo girls

I hope I can post this as I seemed to have problems the last time I wrote. Anniac its such a long journey it seems and yes I have days that I am exhausted. I hang on to the fact that I am going to get better. If I thought I would be like this for the rest of my life I don't think I would want to carry on.

I cannot believe I just wrote that sentence, it just shows how much this thing is getting to me. I am refusing to go down the depression route on top of everything else.

I would really love to go back on the prednisone just to be able to move for a day. Unfortunately that is not to be. I felt I had to resign from my job, as i have now been off for five months. My job is very physical and involves me being on my feet for at least ten hours a day. That is impossible now. The personel manager wouldn't accept my resignation and has contacted the companies occupational health department to see what they can do. I was grateful but realistic, I am but a small pin point in a huge co orporation, and they owe me no loyalty as I have only worked for them for two years, in which I had a lot of time off as my oldest daughter had cervical cancer. I am looking at disability options, having never claimed benefits I find it difficult to accept that I will have to go down that track. I don't even know if PMR is recognised as a disability, but I do know that I cannot do much at all. Even writing this blog is making my back ache terribly and I know I won't be able to continue much longer.


ali 6 years ago

hi its ali again

sorry my computer seems to not want to play on this blog. It only printed half of my message. If anyone wants to contact me by email you can get my address from Maria.

good luck to you all ali


Becky 6 years ago

Hello,

I just checked in and read most of the posts since I last checked. Sorry to hear of the struggles. I am hanging in there, but have to be careful with myself. I've noticed when I drop my Predisone 1 mg I go through about a week of HELL.

I have slowed down decreasing the dosage to 1 mg every 2 to 3 weeks. I'm just today down to 4mg.

I am eating a macrobiotic diet and I think it is really helping me. It is a hard diet because it is so bland. I consulted a macrobiotic counselor through the Kushi Institute and I'm going to a week long class in a couple of weeks. I am on nothing but the 4mg Predisone. No vitamins and no pills. Just the diet.

I am still able to walk 3 miles a day, but by dinner I'm done and exhausted. If it wasn't my job I would never do it.

I'll keep you all posted on my progress with the diet.

Best to all!

Becky


Kathie 6 years ago

Almost 4 months off prednisone and life is coming back!

I'm hoping that statement gave some of you hope. I can throw covers off the bed. I golfed three days in a row this week (18 holes Tuesday, 9 holes Wednesday, 18 holes Thursday). I was fairly sore on Friday and a bit more today because I had a massage last night, but there is a smile on my face. I've have three crazy weeks with family and work. Lauren had her baby girl on the 25th, renovations on their house were completed, I conducted a workshop at a local university, took a golf lesson, practiced, golfed, and EVEN went skiing one day for a couple of hours. Took a trip to Vancouver and have kept up with my work tasks, infrared sauna use, yoga and pilates.

So - here's what's working...

Weekly massage (pricey but my insurance covers part)

No sugar or wheat or red meat

Lots of water

Liquid Omega oils (cod liver with lemon and nutrasea)

An adrenal replacement

Magnesium

Following the Inflammation Free Diet book

Purchased a new bed

And, spent an hour with a counselor.

My regular MD still wants to put me on some kind of med, but I finally told him that what I'm doing is working, slowly, but working. Patience is really the key here. I'm down to only needing Excedrin during the day and robaxacet and emtec (T3 w/o caffeine) at night. I do have to take it twice during the night, but that's much better than all day long. Increasing the magnesium helped with the pain, also. I still feel like I am the tin man from the Wizard of Oz and need someone to oil my joints, but I have to say, it's improving. My ND, massage therapist, and osteopath all have been a great support in encouraging me to stay the natural course. They each suggested I look not only at the body issues, but also the mind - hence the hour with a counselor. I'm already working on things she suggested - mostly guided meditation and breathing exercises. Trying to just "be". I found several programmes of varying lengths for my ipod that work well. At first, I relied on them quite a bit, but now I'm finding I can do the breathing and meditation on my own. I realized that I’ve actually gotten quite ill after major stress experiences throughout my lifetime, so now I’m trying to retrain myself to recognize symptoms and work through it better. Wish me luck on that one!

Becky - my diet is fairly bland, also, but I've discovered shakes... I can have milk, yoghurt, and frozen strawberries and a few other frozen fruits along with protein powders from the health food store. Sometimes I use the protein, other times, not. I add my oils and Aloe Vera juice to my shakes - I'm finding I use them as meal replacements sometimes when my stomach is upset or I'm in a hurry. Eating out is still an issue, but I'm learning how to order either what I want directly or choose things and just pick out what I can't eat. Three miles a day is a GREAT accomplishment! Pat yourself on the back.

Summer is coming, thank goodness, it's been such a dark and wet winter here. I think the warmth and sunshine will be an added bonus for most of us. Maybe the goal for this coming summer is to figure out how to keep going through the next winter.

Posting on the blog - Ali, sometimes I have a hard time getting things to post, so I'll copy them to a word document and try again. Thanks for overseeing the blog, Maria. I know it's time consuming.

To everyone else on prednisone still - I honestly have to say I have to hand it to you, but that I would never recommend it. There are other ways to our health, patience (not one of my better virtues), will pay off. Here's to a healthier and less painful month. KMB


Ali 6 years ago

Hi girls

Its sounds really positive that some of us are making progress. I have felt just terrible especially the last few weeks, however I began to sispect it may be down to the amount of pain killers I have been taking. So I knocked them back and sure enough things started to get better. I am more clear headed and dont feel so tired and depressed. I think its interesting that you mentioned adrenal failure kathy as they have just discovered that my pituitory gland is under functioning. I have to go for a brain scan next week. It may explain also why I have been feeling so rotton. I think you can get in a routine and manage the pain, but if you feel ill and flu like on top of it then it is difficult. I am definitely feeling brighter now I have a diagnosis and am off the pain killers which says a lot for how the mind affects you physically.

Things are looking up and I am beginning to see a light now. I have decided to start jogging up and down in the pool. Its not weight bearing but uses the same muscles. When I was training for the marathon I did this when I had an injury. I just feel like such a whale at the moment so getting into a swimsuit is going to be my first hurdle. The weight gain can be contributed to the pituitory problem, but it still does not make you feel any better.

I keep telling myuself that next year i am going to do something mental. I am so desperate to start living again.

Here is to us all getting better Ali


anniec 6 years ago

Hi all,

I am on a bit of a backward slide again , had to drop from 12.5mg pred to 10 mg. .......lasted 3 days and had to go back up as pain, stiffness and inability to function returned with avengence !!but I see my rheumatologist next week , so maybe a more gradual drop ,.....who knows !!

Hey all summer is just around the corner and I hope we all have an enjoyable one.

Does anyone have a craving for sweet things ????..... I hadn't eaten chocolate in 30 years , now I crave it and sweet drinks all the time , I was strictly savoury , saying that I also crave salt from time to time as well !!

Best wishes to you all


Becky 6 years ago

Hello Everyone,

I wanted to report in about the Macrobiotic diet. I have been eating Macro for over a month now. Just got back from a week course on the subject. Met people who recovered from cancers, diabetes, arthrisis. It is a diet made up of supper

foods. It's food as medicine really. It takes about a week for your taste buds to get use to the food, but then you start to taste everything. Very little salt and NO sugar. Whole grains, beans, some white fish and LOTS of vegetables. I can recommend books if anyone is interested.

You almost need to find a Macrobiotic counselor to guide you if your going to do it.

Anyway, I was feeling like my old self and decided to drop my Predisone from 4mg to 3 1/2mg two days ago.

As of last night I am an emotional mess. It is amazing how

it effects me. I was at 4 mg for a month and things evened out.

I've decided to just get off it. I'm going to drop every 3 days until I'm done then eat my Macro diet and wait for my body to heal itself. Not looking forward to it.

Thanks Kathie for your comments. They are very encouraging.

I use to crave sweets like crazy, but I don't now.

Best to you all!!

Becky

PS Something else is I am not on anything other than Predisone. No pain pills and no vitamins. The diet has helped me not be in so much pain.


Becky 6 years ago

I take it back. I have been dropping the Predisone pretty fast and I'm very uncomfortable. I'm going to have to rethink the weaning off fast. This is such a drag.

Becky


Joe 6 years ago

For the person who complained of jaw pain, this is strongly suspicious for the associated condition of Giant Cell Arteritis which can be a big deal, particularly with reference to sudden loss of vision. This condition is eminently treatable, but with substantially higher doses of steroids than PMR. If those symptoms have persisted, consult your doctor without further delay.


Kathie 6 years ago

Hi everyone - I haven't been on for awhile. So far, so good. What's working is on my last posting. It's still working. It's much better when the sun is shining and it's warm. I believe there is life and healing. Keep going everyone. Have a good weekend. KMB


Sally 6 years ago

Hi, Everyone.....I just found this blog...I have had PMR for the last 14 years with one 18 month remission. Have been to over 30 docs who refuse to diagnose me.....have had every test in the book and my blood work is consistent with PMR. Finally seeing a doc in NY who has had over 2,ooo patients with PMR, some of whom are young. That has been my problem. I was 36 yrs old when the PMR hit so no doc would commit to the diagnosis.

I cried while reading your posts as I experience all of the same pain and anguish of the way it has changed my lifestyle. Most people don't understand......Anyway, I am 2/1/2 years into the second round of this.......I also love the effects of using prednisone but found the side effects too much to handle. It took 5 months before my adrenals got back on board after stopping the pred. Became an advil junkie until it finally burnt a whole in my stomach.

Looking forward to checking out the Inflammation diet book although one of the docs put me on a similar natural, organic diet years ago which has helped. Pretty much just suffer in pain with no meds.....and mostly want to die when the spasms hit.....Thanks for so much info......going to look into mobic......and hopefully this new doc will properly diagnose me and give me some other options. Sooooooo happy to connect with some of you.......Sooooo, maybe I am the youngest to get the dreaded PMR at 36?????? I call it the old lady disease. Ha, Ha!!! Really not funny, but if you don't keep your sense of humor in all of this.....ahhhhh what else can we do!!!! Hey do any of you women get really bad flare ups at certain times during your cycle???? Many good wishes to all of you. I just can't tell all of you how happy I am to find this site.......I have been searching for hours, years......to find younger victums of PMR and I finally know that it's the 30 docs and 14 years of tests and research that has led me to what I have known all along.


anniec 6 years ago

I too am toying with the idea of trying to wean off pred faster than the Dr's recommend, they don't have to have the side effects !!!

Anyone done 2.5mg drops after 10mg...Dr's say 1 mg !!!so I would value any comments ???

Here's to trying ...wish me luck


Sally 6 years ago

To anyone interested, I have just started taking a herbal supplement made by the company Gaia. It is a ginger, tumeric extract which is used for inflammation. It is a more natural way that may help those who can't take the side effects of Pred. It is a little expensive at 28.00 a bottle but I am willing to give it a try. It is recommended to use for two months or so for its effects to work. I also take Barleans super omega oil which also seems to help for depression as well as all the other health benefits of flax oil. Wishing you luck, Anniec!!! I know how hard it is to get off the pred. but I would much rather deal with the pain and look for other alternatives than deal with the side effects. I wish I could have stayed on it because it works.......but.......


Becky 6 years ago

Hello Everyone!

Sorry it takes me so long to check in. I am still eating a Macrobiotic diet and it has really helped me. I am not taking anything except the Predisone and I'm down to 3mg one day and 2 1/2 the next and so on. I'll do that for 2 weeks then drop down to 2 1/2 and 2 every other day.

Every time I drop 1/2mg I go through 3 or 4 days of feeling worse then it settles down.

Thanks Sally for sharing your experience. It's a little scary to think of 5 months for adrenal glands to adjust.

The Predisone was so good in the beginning with handling the

pain and fatigue. Now I guess it's time to pay the piper.

If I stick to the diet religiously I do pretty well, but if I eat sweets it really effects me. Did it once and won't do it again. I get really bad pain in my joints and now my

arms and shoulders are achy, but it's not as bad as before.

It is nice to have this place to read and share.

Best to you all!

Becky


Sally 6 years ago

Hi Becky,

Don't worry about the adrenal glands adjusting. I have low pressure to begin with so I had problems with going from a sitting position to standing with a sudden drop in pressure. The adrenals eventually kick back in and the transition wasn't that hard. It's the adjustment to the pain and trying to tolerate some levels of it after going off the pred. Have you looked into natural supplements?? I am taking super omega oils made by Barleans, 500mg of Vit. C, and the ginger/tumeric extract which I just started.

Sounds like you are handling the taper of the pred. Really, you are doing great being down to 2 or 3mg. Hang in there, I know how frustrating it is. I went through two great months from Dec. to Feb. and thought I had this licked but then it came back in full force for the rest of the winter. Just trying to get through each day!!!

Best wishes to you!!!


KEN 6 years ago

Hi ladies. RE: ARRIVING AT THE OPTIMUM DOSAGE OF PREDNISONE FOR PMR --- I read that PMR is predominantly a feminine issue, but I'm a 63 yr-old male diagnosed with it last week at the ER, and released with a script for 2 x 10 mg of Prednisone (ps), daily. I've now read your very informative posts and lots of info about the very scary ps side effects. I've discovered during my brief ps experience that the pain comes back when each 10 mg pill wears off. It doesn't seem logical that the ps should have to beat back the pain each time I take it. I'm out of town on a weekend right now, but I've decided that I'm rearranging the dosage on my own until I can get a response to my email about this to my Primary Care Physician (pcp) at my hometown clinic. In order to try to cover the pain for a full 24 hrs and stay on top of it, I plan to take a 10mg pill at 6 am when I awake, then break one in half to take at 2 pm, then take a whole pill at 10 pm (bedtime). If this works and my pcp agrees to continue, I'm gonna ask her how soon I can reduce my dosage down to 5 mg each at these three times, to see if an even smaller dosage will work. Hopefully, I can quickly find the optimum level of ps that will keep my foot on the neck of the pain, rather than taking excessive ps and tweaking downward. You guys, please let me know if you've found a successful way to quickly get to the optimum ps dose. The dominant theme of the online info I've read about ps, regardless of what it is prescribed for, is that it is better for the patient to begin with small doses of ps and tweak upward, but doctors find it more convenient to start off with big doses and tweak downward. I'm looking forward to your comments on this.


Kathie 6 years ago

Hello everyone! It's been quite awhile since I checked in, so I thought I should give an update. I am now six months completely off prednisone, have stuck to the inflammation free diet, have gradually started putting some things back into my diet - ie bread once or twice a week, still taking the supplements I listed in a previous post, plus a new one called MaxGL (supposedly an anti-oxidant), and trying to be kind to my body. I've been practicing yoga for several years as well as using an infrared sauna (for the past five years), but discovered "hot yoga" in the past month. I have a blog called "heat to heal" located at heattoheal.blogspot.com and have even started a twitter called heattoheal (at twitter - just type in heattoheal and it should come up...).

Here is the really GOOD news! I've pretty much cut out all pain meds except for bedtime. I do take Excedrin if I have a headache and Emtec (T3 without caffiene) plus or minus a muscle relaxant depending on what I've done throughout the day. There are times when I'm still reminded that I have PMR - like yesterday after I had two grand daughters for about 8 hours (one two years old who likes to be swung like a bell. The other three months old who likes to be bounced on the exercise ball). I'm noticing it across my chest and in my upper arms throughout the day. I did go to hot yoga this morning and the instructor actually was quite gentle with us. She said she usually gives the Monday morning class all she can, but this morning she just felt like she should be gentle. I definitely think it was for my benefit! I also feel it after several days of golf - yes, I'm golfing. Not as much as last summer, mostly due to our cold wet weather, but still 3-4x a week.

At any rate, please know that there seems to be life after prednisone and that we can beat the PMR. Here are the things I'm still finding especially helpful:

heat - lots of heat

infrared sauna, infrared heating pads, bags that you

heat in the microwave and drape on your shoulders,

hot yoga, hot stretch in the yoga studio, restorative

yoga in a hot room, layering of clothing.

good real foods

water - lots of water

rest - with meditation & just peaceful sounds

laughter

After reading the recent posts of many of you still trying to find relief with prednisone - good luck. I am finding relief through other, natural ways. Some of the literature I've been working my way through lately include: Heal Thyself; Full Catastrophe Living; When the Body Says No; as well as some audio CDs. I always feel a bit better in the summer - mostly because it's warm. My task is to figure out how to carry this healing into the winter months.

Here's another side note on meds - I've actually been able to lower my thyroid and blood pressure medications... Something is definitely getting better. Thanks for being here today. KMB


anniec 6 years ago

well , broke all the rules and risked adrenal crisis, and went from 12.5 mg pred to zero in 5 days,after 5 months of a high dose, at first tolerable , pain increased but not to the level of last dec. and I could still move , then went though the (jelly legs for 3 days ) but no nausea and drop in BP but at 4 weeks severe fatigue set in .... lead like limbs !!so 2 days ago put myself back on pred , but only 2.5 mg, some pain present , but fatigue gone, feel ,,,almost.... human again, but now on such a low level of pred , hopefully no side effects,and hoprfully my adrenal glands have started working again!!!!!!????? and next week I will drop to 1.00 mg, I accept I will have to live with some discomfort, but I can walk my dogs, work, and look after my husband , house and garden .... wish I could play tennis again , but maybe next year ???

I take no dietary supplements, always have kept to a good diet of fresh food, no processed, sugar or minimal carbs , I grow much of our own vedge and always cook meals from fresh ingredients, I came from a farming family where convienciece food was NEVER eaten , or used a microwave , except from defrosting home grown produce

There is life after PMR and pred ... keep om trying everyone, its an awful disease, but fight on

love and best wishes to all xxxxxxxxxxxx


anniec 6 years ago

Does anyone find that PMR is worse in winter ?


Kathie 6 years ago

Hello everyone! I am currently finishing a book on Infrared Saunas and am adding a section on PMR, so the natural place to find things I've already written are on this site. I was a little surprised to see that my first original post was 12 months ago. I'm very happy to report that today, a year later, I am virtually PMR free as long as I follow the "best practices" of appropriate inflammation free diet, yoga, infrared sauna, heating, and rest. Today, a year after the prednisone fiasco, I want to tell the world that you can beat this without prednisone and the resulting negative side effects. I'll write more at a later time, but wanted to check in while I was here. Good luck on your journeys. Thanks again to Maria for hosting this wonderful blog and dialogue. KMB


Vicki 6 years ago

Thank you thankyou ..I have had this pain for a couple of years now and was only diagnosed with PMR a coule of months ago. I to in 2 days felt over the moon and now as I lower the dosage which was 40mg for the first week and I was down to 25mg when I got the bloated tummy and the horrendous reflux..all side effects of steriods. I now take Nexium for the reflux and fluid tablets for the edima...but this is the first article I have seen for this ANYWHere...I am in Australia and thanks again.


Dee 6 years ago

Hi, I was diagnosed with PMR about six months ago. At first I tried to cope with the symptoms by just taking painkillers. However, I finally agreed to start taking Prednisolone when the pain got too bad...everything was uncomfortable...sleeping, getting out of bed in the morning, sitting, walking, everything, I couldn't even wash my own hair.

The starting dose was 15mg, it made a difference but it wasn't the miracle cure I'd hoped it would be so I went up to 20mg. The pain is so much better now. Last night I turned over in bed without even thinking about it! For the first time in months!

However I don't like the side effects, it makes me feel 'woozy' and headachy in the afternoons. I suppose I have to weigh up which is worse...being in constant pain and being unable to do everyday things or having 'spaced out' afternoons. My GP has suggested lowering the dose in a few weeks, we shall see what happens then.

I haven't tried any special diet or exercises, apart from walking, so it's really interesting to read about other people's experiences with PMR. Thanks.


Gloriaed 6 years ago

I am 80 yrs old; developed PMR year ago. Dr. I see is rheuatologist at major Boston hospital. When I tell him, after lowering Prednisone to 5 mg that I experience pain in my neck, he states that the neck pain is not associated with PMR but rather, wear and tear. Note: the first time I experienced neck pain in neck was during later stage of PMR prior to taking Prednisone which was like a miracle drug. This doctor is 65 years old, a rheumatologist in fine Boston Hospital. What is going on in his head. I'm losing confidence quickly; maybe not soon enough.


Ali 6 years ago

Hallo Ladies, I have revisited this site after a period of about 6 months. So much has happened and still I sit here today in pain. The prednisone was fantastic and awful all at same time and I was taken off it. And so my diagnosis has ranged from Polymyalgia, through Cushings disease, a tumor on my pituitory gland, and fybromyalgia.

Months of different medication and not getting anywhere fast. I took matters into my own hands. I am a qualified psychotherapist, and I suspected that my symptoms were perhaps somewhat psychosymatic. I had endured huge emotional trauma over the last 6 years and I think my body just packed up, it couldn't take any more. I started to word with NLP, Neuro Linguistic Programming and a new technique developed by a guy named Gary Craig. Although I am still in pain, my head is clear, I am positive and I can think straight. The pain has hugely improved and I can see a future. I am not cured but I am handling the every day to day tasks and refusing to quit. If anyone is desperate as I was, then google Gary Craig and see what you think. I wish you well Ali


ali 6 years ago

Sorry gary craig's technique is called EFT. Emotional Freedon technique


medical blog 6 years ago

PMR is tough. It requires long courses of prednisone and a prolongued taper off the med. For many illnesses a brief course of prednisone is adequate. One key to using prednisone is to keep the duration of treatment as short as possible. If you use even a very high dose for less than 2 weeks you usually don't need a prednisone taper. http://drpullen.com/prednisonetaper/


Rosalie 5 years ago

I just heard from my doctor today after some bloodwork due to an infection in my neck and they said it looked like a reaccurence of PMR. I said a reaccurence of what because I had never been told that was what I was diagnosed with this summer, they had treated me for Lyme Disease but low and behold they forgot to tell me since then that I don't have Lyme and that I have PMR. When looking up info. tonight on PMR I am quite concerned if I even have this because I am only 36 yrs. old and I see everywhere that it's very uncommon under 50. They do have me on 10mg. Prednisone right now. My dr. office is sending me their printout tomorrow about PMR because I have never heard about it. Should I be contacting a Rheumatologist, what should my next step be? Help!


Kay 5 years ago

No one in my area, so far, has seen a patient with PMR. I am finding it very difficult to get a confirmation on the condition. My GP has finally come aroung with a PMR diagnosis. I am currently trying to bring the Pred dosage down to 5mg in the morning and 5mg in the evening. So far I find that I need a larger dose in the evening, otherwise I can't move in the morning until around 12. Excercise must be done, no mater the pain, it's the only thing that gives me any hope that I can manage day by day.


almasi profile image

almasi 5 years ago

Thanks for the encouragement you offer to PMR patients in this hub.


ali 5 years ago

Hi everyone, it has been a long time since I wrote a post here. I just wanted to give hope to those of you out there. After suffering for 2 years, I am finally beginning to feel better. I no longer suffer the over whelming pain, and I am so much more mobile. I look forward to a bright future now, it has been a long, difficult journey. Many times I despaired at what had happened to me, and felt my life was over. Sounds dramatic now, but I was so ill. I have just walked for 3 miles, and I feel good. I may stiffen later, but I probably could walk again tomorrow. I believe I will be completely better this year, so good luck everyone, hang in there. Think positive thoughts and it will get better


Sally 5 years ago

Hi Rosalie,

Hope you check in again. My PMR started at age 36 but the docs refused to diagnose me because of my age. I did have one remission of 18 months but due to stressful circumstances in my life it started up again. I am now 50 and about 3 years into my second time with PMR> I did get finally get a diagnosis from a doc in NY who has seen many younger patients with it. I hate to say I am looking forward to menopause because my cycles seem to make it worse. I am actually hoping to go into remission when the cycles stop. Good luck to you. and yes you can get PMR at an age undr 50.


Myrt's daughter 5 years ago

I am wondering if anyone with PMR experiencing one sided facial weakness, tingling and swelling - similar symptoms to Bell's Palsy but longer lasting. This, along with extreme generalized fatigue are symptoms my mother has, with no abnormal bloodwork. They are suggesting she may have PMR. She had very good results taking prednisone initially, but is now having same symptoms back again at 20 mg a day. Any thoughts???


Becky 5 years ago

My last entry to this site was 9 months ago.

I wanted to write again because I have had wonderful results with a Macrobiotic diet. I have been completely off Pred.for 3 months and taking no pain meds or supplements.

My diet is extremely clean and full of nutrients. Whole grains mostly short grain brown rice, beans, fish, specific

vegetables, sea weeds, seeds, and some nuts is the bulk of the diet. There are other things in moderation.

If I eat sugars my pain comes back, but not so

much that I have to take anything. I've been completely dairy free for almost a year. I eat only very high end Olive Oil and Sesame oil. I do Yoga 1 to 2 times a week and walk 3 miles

a day with my work, I'm a professional dog sitter/walker.

I've lost 50 pounds over the last 4 years. From 220 to

164. I stopped losing at 200 then started eating Macrobiotically to get off the Predisone and lost the rest.

I feel better than I have in years, but have bad days if I eat too much sugar. The only sugar I eat is Rice Syrup, Malt Syrup and very occasionally Maple Syrup. I cook with

these. I drink carrot juice for a sweet craving or eat a little apple sauce.

This diet is super health and healing, but it can take years of steady improvement, which the American culture doesn't like.

We want quick fixs.

The diet is only one aspect of this. I have completely changed my life style also.

If anyone is interested in looking into this there are many books, but I would recommend "The macrobiotic way" by Michio Kushi or "The great life diet" by Denny Waxman.

I went to the Kushi Institute for their one week Way to Health program almost a year ago. I had a consultation with a Macrobiotic counselor who guided me in how to eat

for my condition. It wasn't easy but I followed it and

started feeling better after an initial period of detoxing.

I still go through periods of detoxing, but they aren't as

difficult.

This is very individual and probably not for everyone, but

it has literally saved my life.

The American diet and life style is making us sick. A lot

of the foods are addictive and hard to give up, but it can

be done.

Best to you all in your journey to well being.


tom 5 years ago

wow- these are wonderful comments and very encouraging. I had PMR over 5 years ago- it settled down- then flared up after 2 years- then disappeared.. Now I manage just fine w/o pred and take aleve when I need it. My side affects are a terrible neck. Be aware of this- no amount of excercise or anything will help- actually chardonnay feels good!


Tanya 5 years ago

Had PMR for about 9mnths now - had to diagnose it myself via Med-Help website...most awful pain I've ever felt. Tried anti-inflams...fantastic but stuffed my liver function. Was put on 1Omg prednisone (didn't want to do it) and have now come down (reducing by 1ml every 2wks) to 4ml - still have pain most of the time, but figure that's kind of alright as that way I'll know when the damn illness goes away. Was told it 'burns out' after 1-5yrs and am horrified to read some of the comments above where people have had it for 1O+ yrs. It is a pain in the neck of an illness - and just about everywhere else as well....but could be worse I guess so I just keep hoping that 'tomorrow' it'll be gone.


Cinnamonspice41 5 years ago

Wow...I am so excited to find this...will post later once I have a chance to read everything.


Tanya 5 years ago

I truly believe that PMR is caused by an injury and is not a virus. I can trace my arm pain and leg pain (worst places of pain for me) back to overdoing things and I was just wondering if other people have an opinion on 'virus' or 'injury'.


tom 5 years ago

well, after my last post, I actaully feel better in some rspects- my neck is better- dr suggested an operation- no thank you-i seldom take aleve and all I can say is this is a desease that comes and goes- the medical profession knows diddly about it, but , you all know it is devasating when it's "on"


Damselfly profile image

Damselfly 5 years ago from Columbia, MO Author

Thank you to all the readers and those who have shared their experiences with us. I am blessed to have very few flare ups these days and when I do (feel that familiar pain in my neck) I relax and breath into the moment, using my hands to squeeze the muscles in my neck. My discomfort is mostly during my sleep cycle.

I have been off my prednisone for nearly 18 months. It was very painful at first and sometimes I dreamed of taking them again. I was prevented by the memory of weaning off. Prednisone was a miracle for me.

There are days I live exhausted and those I just push through. I am looking forward to big changes in the future which will allow me to relax more fully, promoting increased energy. Presently, I take a Reformer Pilates class and teach a yoga class.

Life is all about balance. As we learn to live without judgement (of ourselves and others) we can find the space that allows us to be. We may not be able to live at Zero Balance - but we can find is long enough to find relief.

Blessed Be.


Cinnamonspice41 5 years ago

Hi Damselfly

I am off prednisone too and like you on some days crave a moment of feeling normal, but, then I remember what pain it was to get off of it. My neck is mostly a night thing too...like last night..lol But, gone today. My days fluxuate also. Some days I can barely get out of a chair. I keep walking though..sometimes crying along the way because of the pain, but, I want to keep muscle tone...so I carry on. I don't feel any worse for it..so, I just do it. We must just carry on and try different things for relief and be thankful for the days that are better than others..:)


Cinnamonspice41 5 years ago

and yes...arm and leg pain...and back and hips...but, above the neck I seem fine..LOL


Cinnamonspice41 5 years ago

I do think that if you have had an injury in certain areas...that those areas may be more sensitive to this disease...of course, who really knows..if something hurt before...it certainly isn't going to feel any better now I don't think.


Tanya 5 years ago

I live in New Zealand where they tend not to prescribe medication for every illness - saying that I'm still on 3ml of pred., and on Mon morn I woke up and truly believed that this 'thing' had gone. I could dry my feet and felt fantastic! Today is Friday and since Tues I've felt just as PMR as I have for the last year. Stange thing this PMR!!


Cinnamonspice41 5 years ago

I know what you mean Tanya...a couple of days ago it rained and I could barely move...today I feel quite good...at the moment anyway...it always very noticable..the fluxuations..strange indeed..for sure!


tanya 5 years ago

I just had my 7 month hospital check up (all for free in NZ I might add) and the Dr sent me for about 20 X-Rays on my neck/shoulders/hips . . . just in case it is actually rheumatoid arthritis. Have just looked this one up and am sure it is PMR. Anyone else been checked for rheum arth??


tanya 5 years ago

No news from the Hospital so am presuming that PMR it is. The Dr has uped my prednisone from 4 - 6mg and I can't believe how much better I feel! Got out in the garden on the weekend and am able to turn over in bed and get without too much pain up in the morning.....yee haa! To top it off - the All Blacks thrashed Australia to be in the final of the Rugby World Cup.


Ronald S 5 years ago

Have been on Prednisone fo PMR for about 4 weeks. Started with 60 mg once per day now at 30 a now heading to 5 .I have no pain or stiffness left anywhere.Wondering about sde effects of Pred .1 - legs weak and rubbery 2-vision deteriating.

Eye problem started before taking Pred. and was treated with minor laser surgery as follow up from cataract removal and lens replacement about 5 yeas previous.The follow up was to clear up the fogging one get in the sac that hold the new lens.There was no improvement after this laser touch up and before I started on Pred.

Any suggestions or anyone else having eye problems while on or after taking Pred.


Tanya 5 years ago

Hi Ronald - I presume that you've also read the information about giant cell arteritis which you can also get if you have PMR? This does affect the vision, but I am sure they would have been aware of this when you were diagnosed so I hope (for your sake) that you do not have this as (I believe) it is nasty. Good luck and you are lucky to have come down to such a low dose of prednisone so quickly and be feeling okay! :-)


Fred Parry 5 years ago

If I have to use one word to describe the benefit of Dolrx that would be “amazing”.A few months back I noticed swelling in my left wrist. Being a business woman I could not afford the painful days and nights. I took all the pain medication available in the market but all in vain. After taking Dolrx for 2 days my swelling started to subside and I felt much better. In a week time all the swelling was gone and pain had subsided. I am so much sold on this product that I will highly recommend it. Please go to painfreeology.com and give it a try. You will not regret your decision. Check with their website http://www.painfreeology.com/


Fred Parry 5 years ago

If I have to use one word to describe the benefit of Dolrx that would be “amazing”.A few months back I noticed swelling in my left wrist. Being a business woman I could not afford the painful days and nights. I took all the pain medication available in the market but all in vain. After taking Dolrx for 2 days my swelling started to subside and I felt much better. In a week time all the swelling was gone and pain had subsided. I am so much sold on this product that I will highly recommend it. Please go to painfreeology.com and give it a try. You will not regret your decision. Check with their website http://www.painfreeology.com/


Barb 4 years ago

Hi fellow kiwi Tanya, It is great to discover this site as prior to my diagnoses I had never heard of PMR. I am another one of those 'young 52yr olds'(haha) and was diagnosed with PMR in August. Initially I had severe hip pain and my orthopedic surgeon recommended a hip replacement- this seemed logical as I had a serious hip injury from a car accident in 1997, however my pain soon spread to my arms which was worse than the hip pain so my GP suggested that it might be PMR - blood tests confirmed this and I started on 20mg of prednisone and felt like a new woman.( the bonus was I didn't have to have hip surgery) I've been on a tapering dose since and have had a few flare-ups so have had to up the dose (so frustrating). I am now on 12mg and experimenting with splitting the dose to see if a lower dose at night reduces the severity of the side effects. I am very concerned about the side effects of this drug. The worst thing for me is insomnia and night sweats. I've read that magnesium deficiency caused by the prednisone can also contribute to these side effects. Any one got any ideas?


CinnamonSpice 4 years ago

Hi Barb..boy, I wish I had some answers...did the prednisone thing...weaned myself off it...a trial in itself by last June...now I just deal with the pain...ask me how many supplements I have tried..LOL It certainly would hurt to take a magnesium supplement. At least give it a try for awhile and see if it makes a difference. I keep trying to find something that makes a difference and haven't found one yet. But, remember what works for one may or may not work for another. I tried the malic acid with magnesium also..which was recommended by my chiropractor. I have seen no different and I took it for at least a month. None of these things after researching them seems to do any harm so they are certainly worth a shot. I also upped my vitamin D...have taken tumeric for quite a while..although, I stopped about a week ago...took flax seed capsules for awhile...you name it..:) While I was on the prednisone I did take calcium..because from what I read prednisone does deplete that in the body and my doctor mentioned it also. I have also taken vit C, quercetin and lots of garlic..fresh and in pill form. Just keep on plugging..:) Good luck to you and Merry Christmas! (oh..long story short..I had xrays because of hip area pain..not hip either..:)


Cinnamonspice 4 years ago

I wish I had proofread that..:)..It should say it certainly WOULDN't hurt to take a magnesium supplement...and it should say I have seen no DIFFERENCE..next time I will proofread.


Barb 4 years ago

Thanks for that advice - I actually think the magnesium is making a difference. I'm taking 400mg and feeling much better, but also could be due to the prednisone dosage split 6mg am/6mg pm. I think my magnesium levels were very depleted as I was also experiencing muscle spasms which are a classic symptom of magnesium deficiency. Merry xmas everyone.


Nicki048 4 years ago from Vancouver Island

What a great discussion- very inspiring to someone diagnosed with PMR four months ago. I know we will all get through it eventually and my heart goes out to everyone. have been busy researching everything I can find about this beast. I wonder if anyone has a similar experience as mine. I have been taking prednisone four four months and my CRP levels continue to go up. I thought pred was supposed to lower CRP. I'm beginning to wonder what else may be going on in my body? Any thoughts would be appreciated. Thanks.


CinnamonSpice 4 years ago

Hi Nicki..what does CRP stand for..?..:)


Nicki048 4 years ago

C-reactive protein. Apparently it's more specific than ESR blood test. It's the one my rheumatologist uses. I'm a bit frustrated that prednisone isn't reducing CRP levels since I understand that even in small doses, it usually does reduce it.


helenair 4 years ago

Hello,,, just recently diagnosed with PMR.. need to process all of the posts on here,, so much to take in,,, thank you to you all for your sharing and caring...


tanya 4 years ago

Well - just got back from 4wks of holidays and I (believe) that I may have discovered a secret weapon against PMR. It's called DENZ (denz.com) and is basically ocean floor scraps and I have been taking 1 tbsp a day (dilute in water) for the past 6 days and feel wonderful. If my pain (before DENZ) was at a 8, it is now about a 4 and I can't believe how much better I feel - I can actually turn over in bed now and when I get up in the morning I'm not all achey and can even dry my feet and scratch my back! Please check out the DENZ website and see what you think . . . good luck


helenair 4 years ago

Hi Tanya,,, could you give more info or a link,,,, I have no luck when googling denz.com.. ty...


tanya 4 years ago

Hi - the website is denz.co.nz and just an update - a very good friend of mine has been taking it for around 4 days now and it has completely taken away all pain in her wrist from arthritis. :-)


tanya 4 years ago

Sorry - that should be www.denz.co.nz


ernestine 4 years ago

Hi Tanya and everyone else on this hub,

I have recently been diagnosed with PMR, or at least the doctor says that is the most likely condition I am experiencing. I am still on 25mg Pred. and I also take 10mg methotrexate since November last year. I am going ok, but all this medication worries me. I just qualified as a yoga teacher and am looking forward to my new career at the age of 52. I am also a masters swimmer and love walking my samoyed pup who just turned 1. Like all of you was was disappointed with the diagnosis because of my normally excellent health and fitness. I have continued to practice and teach yoga but I have given the 'hard' swimming away. I now do about 1km at leisurely level twice a week, since the last 2 weeks, which I do enjoy.

I can function very well on the 25mg prednisolone and I have tried to taper, but I simply can't. The methotrexate makes me extremely sun sensitive, which is hard as I live in Australia.

I got excited by Tanya's post on denz.com.nz and had a look, but it sounds so weird. It sounds like an insecticide! There is very little on the healing powers of it in relation to humans. Who recommended you to take this? I am taking silica and minerals as well as magnesium. I also take olive leaf extract, emu oil(6 capsules a day) plus calcium and vitamin D to counterbalance the prednisolone as well as folate to help with the methotrexate. I manage ok in daily life so I feel quite lucky, but these heavy drugs worry me.

What other stuff are you taking Tanya?


Tanya 4 years ago

Hi Ernestine - my friend was taking DENZ (not the insecticide one - there are two - one is for humans and animals) so gave me some to try. I felt so much better after my first dose and have quite a few friends who now take it. I was put on 10mg pred to start (March 2011) and am now tapered down to 5mg every 2nd day (I did this myself as I had trouble getting below 6mg) which I find works quite well for me. I am also taking Methotraxate (started 4 wks ago) as the Dr thought this would help me get off pred after 3mths of starting it. At first I thought the Meth might have made me feel better but at that stage I had only been taking it for 2.5 wks and was told it would take at least 1 mth before it started to work, and possibly up to 3 mths. I (like you) HATE taking pred and am not happy about being put on meth, but if it helps me get right off pred, it'll be worth it. From what I have read/heard it seems to be quite hard to get lower than about 5mg of pred - that is why I started to take it every 2nd day - better than staying on 5mg every day. The DENZ gives you heaps more energy, helps you sleep and cleans out the parasites in your body . . . that's got to be a good thing!


Ernestine 4 years ago

Hi Tanya - thank you for that. I will keep it in mind for the future, as I have a reasonably good amount of energy and I don't have any parasites (had a live blood test recently)so that is all ok at the moment. I have also found something that might be of interest on this website http://www.earthingoz.com.au/. A friend of mine pointed out the effects of our constant exposure to radiation and its effects. My brother has psoriasis and his wife is extremely sensitive to radiation and can 'feel' phone calls coming in. She suffers headaches and bursitis due to radiation, which I know as a fact, so this theory that radiation contributes significantly to any inflammation I find quite acceptable. I am now thinking of buying one of those earthing mats. They don't seem to be that expensive and worth a try. I have also bought the anti inflammatory cookbook - just waiting for it to arrive.

Thanks again Tanya and good luck.


syl-h 4 years ago

My first post on this site, thanks for all the information, it's really helpful.

I was diagnosed with PMR 18months ago after 4months of pain. I was 54 and I had been very active - able to do 3 day hikes in the mountains carrying my own pack. All of a sudden I couldn't tie my shoelaces or do up my bra. I found great relief from prednisone and was able to return to going on day hikes in the mountains and managing better at work.

I don't like taking it though and have been working my way off it ever since. It was hardest once I got to 5mg and so Istarted to cut my tablets in half to reduce by 0.5mg at a time. I eventually got down to 1.5mg a day, but never felt well enough to go any lower. Now I have a relapse and my ESR and CRP levels are up again. My rheumatologist has increased prednisone to 4mg daily and I'm seeing if that works. He's talking about methotrexate, but I really don't like the sound of that.

I'm keeping my fitness up by swimming and doing a modified gym programme alternate days. I hate this pain and exhaustion. I keep talking myself up, reminding myself that it will go away eventually, that it's not as bad as if it was arthritis or something that is only going to get worse. That it will get better.

I'm taking a whole raft of nutritional supplements and have cut out sugar, caffeine and alcohol. That was a big ask, I really enjoy a good cuppa, something sweet and a glass of wine with my dinner! My nutritionist believes I need to rebuild adrenal function and that is what I am working towards.

This is so hard at times, it's good to know there are other people out there struggling with the same problems. I'm not alone. Syl


Barb 4 years ago

Hi Everyone, I've just scrolled through all of the posts again and am wondering how those of you who were diagnosed 3 years ago are today? It would be great to hear from someone who has got through this and is 'back to normal'. I can't see the light at the end of the tunnel at the moment. Am really struggling to get my prednisone down below 10mg each time I try I get a relapse - aching arms, sweats and imsomnia. I am becoming increasingly concerned about the side affects of the pred - thinning hair, puffy face, weight gain. I've come to the conclusion that stress is actually what triggered the onset of this disease for me. I am a teacher and experienced a very stressfull year last year with a couple of particularly unpleasant experiences prior to the onset of PMR. I've just had a 6 week summer break and was just starting to feel good again. However the beginning of the school year and I'm having another relapse. Has anyone else made the connection between stress and the onset of their PMR? I'm trying really hard to manage my stress levels but as soon as the PMR flares up I get down and the cycle starts again...its so frustrating as I hate taking drugs and like so many of you have been used to maintaining a healthy lifestyle.


Tanya 4 years ago

I believe that both/either stress and/or an injury causes the onset of PMR. I was stressed (moving house) and also overdid it (moving 50kg bags of compost/bark) physically just prior to the onset of my PMR. One thing that I have noticed is that everyone who posts seems to be quite fit and active prior to onset, and also most seem to have difficulty when trying to get below 5mg prednisone daily - I now take 5mg every 2nd day which is the only way I could get below 5mg, and although I am quite stiff and sore when I wake up on my 'steroid' day I am still happy to be below 5mg per day, and after a couple of hrs of taking my pred I am feeling way better. Relaxing is the best thing for me - it is hard though when your body knows it will be sore . . . not to tense up!


syl-h 4 years ago

I am sure stress is connected to the onset of PMR as well as relapses. I too am a teacher and had just resigned from my job (too exhausted to continue) when PMR started. I've worked part time since and I can manage that, but I can't work at the moment during this relapse, it wouldn't be fair on the kids!

I try to reduce stress in my life but as it is part of modern living - I try to deal with it calmly when I'm under stress. Paradoxically prednisone reduces the body's ability to cope with stress when used in the long term -so, when I had a root canal done a couple of days ago I increased my dose by 1mg that morning and spent most of the day blobbing about recovering. I'm recovered from that now and don't think it's triggered another deeper relapse. I'm staying calm, taking it day by day.


Damselfly profile image

Damselfly 4 years ago from Columbia, MO Author

I am so thankful for the continued conversation around living and treating PMR. For those of us who have and are living with the pain, support is tremendous. Even those who love us deeply do not understand the agony and distress we feel.

A common theme seems to be how very physically active we were before PRM flared up and how we have been literally stopped in our tracks. There is much to be said for taking the break that has been offered.

Having lived through the joy and side effects of prednisone, I understand the urge to be done with it. On the other hand, this is the break from excruciating pain. This is the rest our bodies need to recover from attack.

Massage, movement, sleep, and long hot baths are some of the self care we can implement toward recovery. I am two years off of prednisone and every now and then I roll over unable to move my neck without horrid pain. I have found that relaxing into the moment gives me time to remember to let go.

I let go of the memory of the first flare ups and can now easily work through this discomfort. There is no hurry, just now. Letting go of how things used to be allows us to find new solutions.

While we share common symptoms, we each have a unique perspective on how PMR effects our lives - not just our movement, but our concept of who we are and how we show up in this world.

What lessons are you learning during this process?


CinnamonSpice 4 years ago

Nice post Damselfly...I have never taken so many showers in my life..sometimes two or three during the night just so I can get back to sleep. I have been off prednisone for 7 months...a small dose didn't seem to make much difference...so, I said the heck with it...took me a long time to wean off of it. Plugging along..and always wondering what it IS that attacks the body this way.

Best to you all..


Barb 4 years ago

Yes thanks Damselfly, that does give me hope. Your calm accepting attitude and the personal learning journey you have experienced comes through loud and clear. I am certainly learning alot about myself while trying to balance PMR and my life. I have read a few of Deepak Chopra and Echart Tolle's books and find the messages helpful...its so important to stay positive otherwise this thing can take over your life.


Tanya 4 years ago

When I first got PMR (for about 2 days) I was a little upset, but once I got my head around it I decided a couple of things:

1st - at least it goes away, so be thankful for that.

2nd - I believe that PMR is your body's way of getting

you to slow down and take it easy - emotionally

and/or physically.


Barb 4 years ago

Tanya, I absolutely agree, I often remind myself that it could be worse - most of the time I keep pretty positive, however the lack of sleep is the thing that drags me down- the only way I can get a full nights sleep is to take a sleeping pill which I don't like to do too often. I can cope with the pain during the day as it usually wears off once I get moving. Not sure if its caused by the prednisone or the actual PMR.


Tanya 4 years ago

Hi Barb - I have tried to deal with PMR without prednisone and it was a nightmare. I'm now on Methatraxate which has been prescribed in the hope that once it "kicks in" (around 3 mths) I can get off prednisone once and for all. I must admit that I am starting to feel way better (about 7wks after starting Meth) but I think it's probably a case of getting used to having PMR and living with it. Meth does help me to sleep though which is a godsend. As for depression being a side effect - I think that you feel a little depressed because you're feeling so tired and sore.


Geof 4 years ago

I have had PMR for some 17 years. I am just getting over my 3rd relapse with my prednisone dosage at 2.5 mg/day. It seems to take about 2 years starting at 15 mg and tapering quickly down to 5 mg over a couple of months. Kicking the prednisone altogether is difficult with numerous relapses. I take the following vitamins and pills in an attempt to keep inflammation as low as possible: vit E, vit C, omega 3s from fish oil, simvastatin, baby asprin, prilosec, glucosamine to suppress my immune system. I have been tempted to take one of the new immune suppression drugs but my docs don't think it is a good idea. Statins are a miracle drug and play a big role in reducing inflamation of the circulatory system. Any comment would be welcome.


ernestine 4 years ago

About 4 months into my PMR and still on 25 mg prednisolone a day(and now on 20mg Meth once a week), but the last couple of weeks I felt very much improved. Going overseas in a week's time so I will wait reducing my pred until I come back. I have had acupuncture, which really helps with the side effects of the pred. I have also been following an anti-inflammatory diet, had 2 kinesiology sessions (came up with some interesting emotional issues I didn't think I had. (I don't need any more sessions now ) I felt it definitely cleared some 'air'. The last 2 weeks I have been keeping appointments with myself to do 30 minutes of guided meditation, which really put some 'peace' in my body. I have taken 2 half hour baths with magnesium salt and bentonite clay per week. I also take about 8 supplements(krill oil, minerals, quercetain, serrapeptase,vit D, calcium, digestive support etc) through my naturopath. Every day I do some slow swimming and or mindful yoga practice with kindness to myself. I also drink home made fresh vegetable juice (beetroot, carrot celery and pear or whatever else I fancy) twice a day and a liter of licorice tea. When I come back from overseas I will go on a detox. I am feeling very positive now about being able to handle it. Whatever pred it takes to have a pain free life in which you still feel you can contribute.... is worth it!


Paula 4 years ago

I have been diagnosed for 4 months now and got down to 9mg when the pain became unbearable again. Advice from the consultant to go back to 15mg for a month and now on a plan to reduce by 1mg every two weeks. Getting rather depressed by the whole thing particularly as I now just want to eat constantly and have not only put on weight but have the lage moon face and neck to go with it. Trying to be positive and focus on the fact that it will go away eventually but knowing now that I am one of the unlucky ones who is likely to be suffering for over 2 years before coming off the steroids is not an easy thing to cope with.


Tanya 4 years ago

After being on Methetraxate for 7wks I have decided to cut my steroids down from 5mg every 2nd day to 4mg every 3rd day. I have not heard from a Rheumatologist since I was prescribed Meth almost 4mths ago and when I ask my Doctor he says "it's your body so just do what you feel helps"! I don't know what helps . . . I'm (like all of us) just trying to do things which make me feel better while trying to wean myself off steroids and have decided that (at the end of the day) I need to take matters into my own hands - so I am. Wish me luck - I will post my progress in a couple of weeks....


CinnamonSpice 4 years ago

Know the feeling Tanya...I started back on steriods yesterday after being off them for almost 9 months...I need a break from the pain. Going to do one week of 15 mgs..then a week of 10...then 7 1/2 until I see him again. I did the wean thing too Tanya..a little differently...whatever seems to feel good and works for you. Good luck..keep us posted..:)


Barb 4 years ago

Hi all, Thank goodness for this blog. It really seems to be the best source of information about PMR. I'm feeling very alone on this journey too...its difficult to explain to people what its like to live with because you're not only dealing wilh the effects of the disease but also the side effects of the prednisone. I see my reumatologist every 3 months but like you Tanya its a matter of trial and error as no one way works for everyone. My latest challenge is dealing with profuse sweating and hot flashes, not only at night but also during the day, it seems to be getting worse as is my pain ..i've just recently increased my prednisone back to 12mg from 10 but this doesnt seem to be helping Also struggling with lack of sleep. I am interested to know if anyone has found that taking the full dose of pred in the morning reduces the night time side effects? I am currently taking a split dose 6mg am - 6pm. I can't remember what a full nights sleep feels like. I do find that I am trying very hard to live in the now and shield myself from unnessesary stress.


Tanya 4 years ago

Hi Barb - I was advised (right at the beginning) that taking pred in the morning was the best thing - due to lack of sleep if taking in the afternoon....also I think you may benefit from doing 10ml in the morning as the effect from pred is short lasting and (I think) that a higher dose is giving your body a bigger 'blast' of pain relief at one time - rather than 2 smaller doses (hope this makes sense) which isn't as much pain relief. I know what you mean about people not understanding - I think that because they can't "see" anything wrong with us they forget we are not well . . . I still have friends and people I work with saying "you not feeling well today" when I am stiff - I get sick of telling them that I have PMR!


CinnamonSpice 4 years ago

To address your nonsleeping and hot flashes...I suggest a garlic and parsley supplement...you can research it. For going on two years now Barb I get up in the middle of the night and take hot warm to hot showers so I can go back to sleep. I am the cleanest PMR patient on the planet..LOL


syl-h 4 years ago

I too have hot flushes and hot hands at night! very strange. I take prednisone all in one dose too in the morning and my sleep is mostly okay.

I saw a nutritionist/ herbalist a couple of months ago and she told me that PMR is connected to 'adrenal fatigue' and has put me on nutritiional supplements and a diet to try to address this. I'm still taking the prednisone and I haven't told my rheumatologist about her theories (I didn't think he'd approve). Has anyone else heard of adrenal fatigue and is there anyone else trying to deal with it.

The part of the diet I don't like is that it increases the protein and fats in my diet and decreases the carbs as well as restricting all my comfort foods - sugar, caffeine, alcohol. Not that I take any of these in large quantities but I miss having them especially when my body is stiff and aching. Eating more fats does nothing for my prednisone waistline either.

Having said this I'm proud to say that I'm down to 3mg daily and looking to start 2mg/3mg next week on alternate days. I got the idea to reduce the dose like that from this website and it's working really well for me so far.

I really value the positive tone of all the posts on this site, it gives me so much hope! I'm off for a swim now, thanks for all your honesty everyone.


Tanya 4 years ago

I'm now doing 4ml every 3rd day and so far so good. I was pointed to an alternative medicine website where I read about the adrenal fatigue so did the fish oil, vitamin C & vitamin B supplements to try and support my adrenal glands but after about 6wks I stopped taking the supplements as I didn't notice any difference. As for the sugar - this apparently 'feeds' inflammation and that is why they try and get you to cut down on this. I also only drank one coffee per day for about 6wks and noticed no difference - so am back to about 2 cups a day. For me - if I just "do" and don't "think" my pain is way better . . . by this I mean that if I can manage to move (turning over in bed is a prime example) and not "think" about the pain my body doesn't tense up and the pain is way lower . . . when I think about it, I know it will hurt . . . and it does. Your body remembers pain and it is hard to make it forget!


Barb 4 years ago

Thanks for everyone for your advise. I think I will try taking the whole dose in the morning and see what happens..I'm so desperate for sleep. I'm wondering if the hot flashes are caused by the PMR or the prednisone? Tanya, do the side effects of the pred diminish when the pred dose is reduced? I'm seeing my rheumotologist on Friday and have a long list of questions for him. I have also cut down on sugar and the other goodies- wine, coffee etc I know what you mean about thinking about the pain... I have the same experience with the hot flashes ..when I think about them I get one, when I'm too busy to think about them I don't notice them so much . I think that's why they are so much worse at night ...because I can't sleep,I tend to focus on them more.


CinnamonSpice 4 years ago

Yes..Syl..I have heard it's connected to adrenal fatigue and anything you can do naturally is a good thing. Fats and protein are the main components of my diet..find low carb helps me feel the best. I do however, have coffee so I don't go mental..LOL I try to drink lots of tea after the morning coffee..cammomile, green, ginger, etc..organic teas. I take lots of supplements..calcium is particularly important if you are on prednisone..I take a powder mixed with water..plus a host of other things...:)When I weaned off of it the first time..it took me forever..going to be interesting how I can reduce it this time and still feel decent..since my symptoms after almost two years are much less...thank heavens...


syl-h 4 years ago

I have a truckload of supplements too. I take calcium, Vit C, Vit B compex, fish oil, butter oil and probiotics. I also take something called 'rhodiola and ginseng'. It all costs the earth! I'm giving it a try until I finish them and if things haven't shifted significantly then I suppose I'll return to my wicked ways with caffeine and wine. I seem to have gone off sugar since I stopped eating it (unless it's home made) and I no longer have any cravings for caffeine.

Meanwhile I'm drinking raspberry and nettle tea, rooibos, green tea. I refused to give up gluten when my nutritionist suggested this, my compromise is to only eat homemade bread made with organic flour from the mill up the road from me.

I've slowed my life down, given up work for the time being, go to the pool or the gym each day, do lots of home cooking, go to an art class once a week. I definitely feel the payoffs in being calmer and yes Tanya more able to deal with pain. Rather than pretending it's not happening I acknowledge it to myself and treat myself gently. I've been looking at the website on Reverse Therapy that someone suggested a little while back and I've been finding that really useful in sorting out the difference between feeling pain and fearing pain.

CinnamonSpice did you have a complete recovery and then a relapse? Or were you almost off prednisone when it came back again?


CinnamonSpice 4 years ago

No...I wish..lol..I just wanted to get off the prednisone..my legs ached so much anyway even on it..so, I decided to tough it out...got tired though after a few months of struggling with it...and decided to go back on it and get a break..so, he started me with 5mgs 3x a day for a week...then this week 5mgs twice a day (for a week)..then 7 and a half a day...until I see him again...but, I MAY try to reduce it to 5 a day...since I don't see the dr. for another month...will see how I feel.

As far as supplements go..I take a whole food multi, buffered C...malic acid and magnesium, bioton, quercetin, vit. D...if you are interested in amounts I will be happy to share. I do take probiotics in spurts..lol Sometimes do oil pulling...and I go to the chiropractor regularly...and I am SO lucky I don't have to work..I think I would flip. I do feel a lot better than when it first started...two years ago...I felt like I had been hit by a bus..is the only way I can describe it.


Tanya 4 years ago

I think I would 'flip' if I didn't have to work every day . . . I would be all stiff and sore - I really need to get moving to feel better - if 'better' is the word to use?!

I see a lot of people talk about 'flare ups' - I don't quite understand this . . . most days I feel the same, my pain is pretty much the same and is in the same areas. My pain is in my neck, shoulders, upper left arm, back, hips, left calf and right leg. I guess I am just curious about what area/s other people have problems with?


CinnamomSpice 4 years ago

My pain NOW is mostly in my neck and hips and legs..my arms are tons better..ny neck is better since I have been going to the chiroprator..one hip area is screwed up from a fall years ago and that mostly kills all the time and affects my back and legs..he has been working on that area a looooooooog time..I am forever hopeful..it really puts a crimp in walking..it is very uncomfortable..and it does go down my right leg.

Praying and wishing less pain for all of you.


rainbow 4 years ago

I am 37, just diagnosed with pmr. I've had elevated crp for 2 years along with the chronic fatigue , a limp and neck/shoulder involvement. The leg aches created exercise intolerance tht i was short of breath with one bolck of fast walking. I've had chronic pain since 17 so I accepted the pain symptoms and was treated psychiatrically, but I go manic on almost everything except modafinil. Prednisoe is great but my first taper, I feel it coming back andI caught a cold, s..o not very happy. I'd like to get back to my pre 2006 condition before I had a collision on my bicycle.the PMR seemed to start with a bad case of brochitsis, age 35, became chronic, now on long term disability. New doc dg right away, felt better same day I took 50 mg pred. It's a miricle!


deb 4 years ago

I have been diagnoses with PMR. I have been taking 20 mg of perdisone for 3 weeks. I feel so much better. My boyfriend and I are invited to wine tasting party, can I drink wine when taking predisone ?


steve 4 years ago

deb,not a good idea to drink while on prednisone.

I was diagnosed with RA 12 years ago, was on predisone for 5 years leveling off at @5mg/day. It took me forever to get off it. I went eventually got to 2 1/2 mg and then to 2, 1 1/2, 1 then 1/2 and 1/2 every 2 days and finally off it.

Now for the past 7 months I've had a stiff neck and can't lift my left arm. Not much feedback from my Doc. Yesterday I woke and couldn't lift either arm. I'm a white male, 53 and it sounds like I may have this PMR you speak of but I tried a week of prednisone (starting at 10mg) a few months ago with no relief. As much as I hate to go back on it, maybe I should try a 20mg dose to start.


CinnamonSpice 4 years ago

Hi Steve..I would think if it was PMR you would have had some relief..but, I am not a doctor..:) It might be that you are just out of whack..lol Have you ever gone to a chiropractor? As far as the prednisone goes...I was started at 20 when this first started and it was like night and day. Then, of course, you have to taper off and the pain comes back..what the heck is up with that?? I am assuming you go to a rhuematologist? Not much feedback doesn't help you much. Maybe you need another doctor?

Good luck to you and all those above...


Steve 4 years ago

Yes, chiropractor helped for years. My neck has been giving me problems off and on for a long time . I called my Rhuematologist after posting this morning and he put me on 10 mg prednisone for 7 days, if no relief call him back. Its been 8 hours since my first dose and I can already lift my right arm over my head but not the left and my neck still clunks when turning my head and is still stiff. I am also on embrel and the weather here in northern NY has been swinging every witch way with lots of barometric pressure changes. Yup, I'm out of whack for sure lol.


pauline 4 years ago

my story is so similar to author, thank you for all the information, so helpfull. i had 6 months of pain, test ect, ect. my body was shutting down, could barley move, constantly tired, unable to sleep, when finally diagnosed with PMR, started on 60mg of presnisone what a result, did get down to 17.5 but back up to 20, fingers crossed.

do find taste buds are changing tho, anyone else have this side effect ?


CinnamonSpice 4 years ago

Hi pauline..

No..I didn't notice anything with my tastebuds. 60 mgs..that is alot I think..I was started on 20..so, maybe the prednisone has something to do with it? Are you taking any supplements?


queenie 4 years ago

My husband has been diagnosed with Polymyaglia, went thru, I say lucky for us, a 2 year low dose of steroid treatment, that we were told would put this disease into remission. Well within about 7 days of being off of the steroids it came back with a vengence, along with a fatty liver, and a touch of cataracts and glaucoma which we are watching, and also a severe case of edema which we are hoping will go away with a diuretic he will start tomorrow. And his doctor has not offered any other options to relieve the pain for the Poly, other than to go back on the steroids, which we just DO NOT see as a viable option, considering the side effects he has already suffered. We Are working at getting the 40 or so pounds down that he has gained, which is very hard to do when you can barely move, and with his limbs so swollen you can barely walk, I just don't know where to go from here!


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susanr1212 4 years ago

I am so glad I found this site. Like all of you, I too suffer from this horrible desease. I was diagnosed last July, but was feeling the excruciating pain a year ago. I was told I probably had it much longer...and I believe that because whenever I told my previous doctor that I was achy and tired all the time, all he would say to me was it was either my arthritis, which I also have, or that I needed to lose weight or exercise more. Or that maybe I was depressed. Right...every time someone in my family would say they were tired and achy, he told them that they werre depressed. Anyhow, last July I had my sed rate checked, and sure enough, it was Polymyalgia. The nice high dose of prednisone I took for two days made me feel like a kid again. It was great. Then I was weaned down to lower and lower doses. I wasn't told how awful I would feel, both physically and mentally. It was terrible. Then I was prescribed 10mg a day. That helped a lot to take away the pain in my arms, chest and entire upper portion of my body. Supposedly, Poly affects mostly the upper part. In my case, it affects ALL of me. I truly believe it is affecting my legs as well. The pain is not just from arthritis...if it was, then I don't think my muscles would hurt as much. But what do I know? About 6 months ago, I went down to 7.5mg, and the pain didn't increase.Well, about 3 months ago my dose was lowered to 5mg a day. For about a month, I felt fine. Then the second month kicked in, and I felt more pain, and more depressed and wanted to cry all the time. The hot flashes and sweats weren't so bad, but what a trade off. The 7.5mg didn't kill the pain, but at least made it bearable. To some extent. Although, even though the doctor says this low dose wouldn't make my hair fall out, I am finding my hair falling out twice as much as normal. Also, I have gained over 20-25lbs since this began. Combined with the srthritis, which also makes my fingers and thumbs, shoulder and neck , hurt, my blood pressure meds, my Zoloft for anxiety and Dexilant for GERD from a hiatal hernia, just to name a few, I am a mess. I am 59. To add to my woes, my daughter is 27, and has her own issues. She had atopic dermatitis, migraines, irregular periods, of which some are very heavy, some not. She also has had mono when she was a child. She has anxiety, and has achy bones and mucsles. She is always tired and thought she had fibromyalgia. Now she thinks maybe she is one of the few that gets Polymyalgia at a young age. She feels like she is 100 yrs old. Sometimes this is too much for me to take. Some times I am just fine, happy, her too. But we do not have patience with lots of things since we feel like crap. We used to be very active, now I feel like my life is coming to a close. I am worried for her... I am not sure how to combat this fatigue in order to cope with living. I still work, and I don't sleep well. That adds to it. I just wish this would go away. I know I am better off than a lot of people in the world, but I am sooo tired. Thanks so much for listening. I hope you all have a less painful day...prayers and best wishes for you all.


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susanr1212 4 years ago

I forgot to add that my prednisone was raised to 7.5mg a day again, and has helped a bit...anything is better than nothing. I have my bad days and not so bad days. Haven't seen a good day in a lonnnng time.


CinnamonSpice 4 years ago

Prayers to you too, Susan...I had a problem with hair falling out..I was freaking out because my hair is very long..I changed shampoos the whole route...didn't change anything...it wasn't until I started taking bioton,5,000 mcg's everyday...(it took awhile)..but, now it doesn't fall out at all..and lots of new hair is coming back.


CinnamonSpice 4 years ago

Just to add..it definately affects my legs..


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susanr1212 4 years ago

Thank you CinnamonSpice. I will check into that if it gets real bad. It actually seems a little better the last few days. What is really bothering me now is that my arms and back, shoulders and neck are starting to hurt more...like when I was first diagnosted last year. Not sure why, since the doctor brought my doseage up again last week. I really just don't get it at all. There is no place that really feels good. Even my thumbs hurt...or maybe that is arthritis...although they didn't hurt until I got Poly. What a mess this thing is. I just keep reminding myself that there are so many people out there with worse problems than me, and I need to be thankful for what I have. It is just so hard, especially when that is just one issue in your life, you know? Toss in everything else, and it is so large. Take care everyone.


syl-h 4 years ago

It sounds really hard for you right now Susan and I send you my best wishes for a good day to come soon. Susan are you able to reduce your work hours so that you have some time for you as well? Like you I feel pain in most of my body - the pain starts in my upper arms and I feel it through shoulders, neck, back, hips and thighs.

It is really difficult dealing with PMR and something we need to be both real about as well as being brave too - I find I don't tell all the people around me that I am in chronic pain and that it hurts most of the time, cos it's too difficult for others to deal with that kind of information. I don't want to present as a 'sick person' I don't have that mental image of myself even if that's what I've been for the past couple of years. I look at my friends with cancer and thank god I'm not dealing with that and I feel thankful that I will eventually mostly recover from this.

I had been doing really well and got down to 2mg daily a month ago, but overdid it on a long walk and I've had (another) relapse. So I'm back to 5mg daily and almost ready to work it down again slowly.

Swimming really helps me and going for therapeutic massage too. I was going to a women's gym for a modified programme, but I'm just too tired this week. I've been having a lot of fun making paper mache masks and models - I just forget about how much I hurt when I'm immersed in this.

I've started working 1-2 days a week and I'm proud of that, even if I collapse at the end of the day (I'm a teacher) it's good for me to be out of the house and with all those positive little people.

I am very grateful too for this website as I don't know anyone else with PMR and so there is no-one to talk to about this except health professionals. Thank you for being there everyone!


CinnamonSpice 4 years ago

Yes..Susan..a mess indeed and truly...very, very hard.


CinnamonSpice 4 years ago

Question...anyone have a weird sensation in the balls of their feet and toes?


CinnamonSpice 4 years ago

Hi Syl..I agree with everything you have said..and can relate in so many ways. If nothing else it's a learning experience in many regards...I am not sure I needed to know a lot of it..:)


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susanr1212 4 years ago

Thank you Syl and Cinnamon...as for working less, I am not too sure I can. Somewhat on a budget now, and that would only make it worse and the stress would most likely not help. Plus, my daughter is also not well, and can't find a job because of that and the economy. We help each other out and watch out for each other, but money is tight. I am separated, but on good terms with my husband...and he does help moneywise, just not a lot because he can't...and he is also a disabled vet, so we are one sick family! lol Gotta laugh.

Cinnamon, i do not have weird sensations on the balls of my feet, but I found that when my Prednisone was above 7.5mg, I did get this weird charleyhorse thing in my toes where they would cramp up and curl...told the doctor and he said not from steroids, but since the dose was lowered they went away...so what does he know? :)

If I sound cheerful today, I am! Last two days were very bad. Yesterday afternoon, I took my afternoon break in my car, reclined my seat and rested, so tired, so sore. I let the sun bake me, which i usually hate...not the sun, but the heat. Well, it felt good. This was after i tried a heating pad, which didn't help much because it wasn't big enough to cover my whole body! LOL Then i also drank a wonderful Stash Chai Spice tea which has cardamon, ginger and cinnamon in it. Guess what? HELPED TREMENDOUSLY! And today, I don't feel that bad...for now. Cinnamon, you made me think of the tea...so thank you so much. :)

I usally hate the summer heat, but i may love it this year. i do love the sun, so i will get some, in small doses. I can't take hot baths, because i can't get up once i am in the tub. so sad. :( well, i am taking up too much space here. Everyone take care and Happy Mother's Day, to all women out there, mother's or not. We are all special. don't worry men, your day is coming soon. :)


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susanr1212 4 years ago

syl,so glad you can swim and move like that. i love the water, but believe it or not, can't swim. can't get to a pool either...well i can, but not a private one. don't like crowds at the pool. Also, there is another site that i go to but this one is the best. so much support here. :)


nancy103 4 years ago

This is so helpful. Last June I was diagnosed with seronegative arthritis, but it has been changed to PMR. Elevated SED and CRP. Immediate relief to 10mg prednisone. Tried weaning, but at 6mg, had to go up. This time I needed 15mg to get relief. Again tried slowly weaning, and at 7mg, symptoms all returned. Back now on 15. I am going to try to wean REALLY slowly, especially once down to 10mg and below.


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susanr1212 4 years ago

Hi Nancy. I understand the weaning thing completely. I am back at 7.5mg. It does not releive all the paind...I would need 20mg for that! :) But it does make it more bearable than the 5mg they lowered me to. I was at 10mg. I am finding that at 7.5 I get this pain occasionally on my right side...stomach area...hmmm...not to be gross...going to the bathroom sometimes helps, but not always. Life is fun. Hang in there. you are not alone


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susanr1212 4 years ago

Well, short lived happiness. Been having a couple of bad days and rude people I encounter sure don't help. I don't understand why 7.5mg is not helping so much now. Maybe it was because I went down to 5mg and then back up again...too much up and down. I think that is why I have been having some crying jags too. At only 1 yr diagnosed and I am DONE with this. I can't take it sometimes. And the fatigue and sleepiness combined with the weight gain and the arthritis I already had, not to mention the meds I talke for blood pressure and anxiety, and stomach...well let's just say...I feel a mess. Will it ever end? I don't see how. :(


syl-h 4 years ago

Hi Susan, it's sounds really hard for you right now. Find something you can do that you like - get a massage, get in a hot pool, visit someone supportive and positive - just do something that will feel good for you. And increase your pred, you don't need to live in total pain.


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susanr1212 4 years ago

Thanks for your support Syl. Yes, it is very hard right now. I am a little afraid to up the Prednisone since it makes me so moody like this. I am not sure if that is good to do. I would like to stop taking it, but I know I can't. I just wish the crying jags would go away. If I had more money and time, I would try to get away for a while, but I can't. There is some stress in my life right now, and I am sure that doesn't help my mood. I won't get a massage...not from a stranger...lol. And sometimes, even when my daughter rubs my back, I hurt worse. No hot pool here, only cold. :( I know...i sound defeated. I am getting some sun and heating pads and hot showers in. Those are nice, even if they don't last long. Being with loved ones, including my dog and grandpuppy are always nice. :) Trying to hang in there. May need to go on sick leave for a while while i am trying to get this under control. That way I can rest when I need to...feel so tired and sleepy most days, and sitting at this desk does nothing for aches and pains. Thanks again. Take care everyone. :)


Tanya 4 years ago

I've never been a 'sickly' person in my life and find PMR the most painful sensation I've had. Down to 3ml a day now and not moving from that for awhile. Put on weight...always had trouble sleeping so can handle that...hate thinking it's 'gone' when I have a couple of good days - but it does remind me of how great it feels to be 'normal'. People don't understand because they can't see anything wrong. When I get really down I just think how lucky I am not to have MS or cancer or any horrible thing like that. Am just wondering what 'lesson' I will learn from this? Probably just to make the most of waking up and feeling good every morning - boy am I looking forward to that day again! :-)


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susanr1212 4 years ago

I totally understand. In fact, today I have decided to change my attitude. I hope i can make it last. :) I have decided to "suck it up", as they say. If I hurt, then I will go slow. If I cry, I will wipe the tears and move on. If I get irritable, then I hope others will understand. If I am tired and can rest, I will. As you say, there are so many others that are way worse off than us. And I also think of my daughter, who is 27 and has head to deal with several health issues herself, one of them my be Fibro...not confirmed though. She is so much stronger than I am. I need to be like her. I think one main problem is that the Prednisone is working against the Zoloft I take for anxiety. That may be why I am emotional...although, it started when my Prednisone dosage was adjusted down, down, then up again. My mind and body did not like that see-saw! :) So, I know that I have to wait this out. I remind myself that I have had arthritis pain far longer, and I managed. I will manage this emotional and physical illness too. I will not let it get me down...at least not every day. Some days will be worse than others, but I will try to focus on other things and be glad I am alive. Thank you Syl and best wishes to you and everyone with this wonderful illness.


syl-h 4 years ago

You show a lot of courage and resilience Susan. I agree with you when you say "I just have to wait this out" and your resolve to do it day by day. I think that just about sums up how I am dealing with this disease. My rheumatologist and GP give me very little guidance on how to manage my prednisone, enouraging me to scale up or down as I need to. At first I felt unsupported by them until I realised that my taking control of it is what it is all about - now this actually makes me stronger, empowers me to monitor my pain, my activities, my rest, my excercise and my medication. It's up to me to manage it and make decisions, it's not my doctor's responsibility. This is a good position to be in I think. And Tanya won't it be good to wake up and feel no pain! Now that really is something to look forward to.


Tanya 4 years ago

It sure will be good to wake up morning after morning and feel great . . . just hope I'm not 90 yrs old before that happens!! :-)


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susanr1212 4 years ago

OMG!!! (guess I am not too old to say that) :) I was answering you Tanya...I'm sorry. I also have been talking to Syl. You are both so nice and helpful...maybe that is how I got you both mixed up! lol Tanya, I sure hope this passes for all of us sooner than later, yet I read horror stories from people that have had this constantly for 10 years or more...not to scare anyone. It is depressing to think about. And Syl, I am also finding little to no additional help from my GP or Rheumatologist. I guess they are as clueless as we are. The Rheum. even said he doesn't think eating the right kinds of food would help...that was disappointing. Today is not too good, knees and hands (knuckles) and back hurt. Slight headache from neck pain. At least it is Friday. :) Have a nice weekend everyone. I wish I could friend you both on FB. I need some Farmville and Fairyland neighbors...as well as some comrads in arms against this Poly war we have. lol


tanya 4 years ago

Hi Susan - I felt quite depressed when I realised that some people seem to have this damn thing for years . . . and it 'comes back' even when people think it has gone! That's scary s***! My rheum and doctor seem to leave things up to me - I'm sure it's because they don't know much more than me about it. I tried the supplements and cutting out sugar/caffeine etc. for 6wks . . . made no difference at all! I do know that if I do too much physical work (on a good day) that I suffer for the next 2-3 days . . . still keep doing it though. I don't do the Facebook thing so the only way I have to communicate is using this website (that's probably not even the correct wording?). When you feel like crying - start laughing...it works for me :-)


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susanr1212 4 years ago

Hi Tanya,I had a pretty good day yesterday...mainly because I stayed home from work and rested. In the late afternoon and evening I felt pretty good. I guess if I could spend all morning napping, I would feel better. Can't though. So oh well. I am not too bad today. Maybe it will last. Yes, laughing sures helps. Glad that cutting out the caffeine didn't work (sorry, don't mean to sound selfish, lol). I love my coffee, iced tea, and occasional diet Pepsi. :) Have a great day everyone.


syl-h 4 years ago

I'm going to see my GP today. Last time I saw my rheumatologist he wanted me to start taking Methotrexate as a way of weaning off prednisone. Has anyone else tried to do this? What happened? I 'm put off by the list of potential side effects. I've never taken any medication long term prior to getting PMR so I'm very resistant to introducing another one and getting caught up with trying to get off that too.

I'm struggling with back pain lately and can't go to the gym so feel blobby and yuk. I'm usually good at feeling upbeat about all this. Maybe it's just winter (I'm in NZ) and the cold doesn't help.

I know, I'll put some fun music on then go for a walk in the sunshine, that should help.


Tanya 4 years ago

Yes I was put on methotrexate and after 10wks they took me off it . . . made no difference at all. I live in NZ also and would love it if I could go for walks - have real bad pain in my left calf after about 5 minutes of walking so that puts me off. I saw my Rheum Dr this morn who has decided that I now have spondylosis (? spelling) which I have just googled and I don't think that is me, but must admit I am starting to wonder if it is PMR that I have. The pain is way different now from 20mths ago when I first felt the symptoms. He has now cut my pred from 3ml to 2ml daily and put me back on less aggressive anti-inflams. Hope this works because I am sick and (bloody) tired of being sick and tired. Take care all :-)


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susanr1212 4 years ago

I hear ya!


CinnamonSpice 4 years ago

No how you feel Tanya..they start reaching for straws...I ended up having an arterial doplar and then an MRI to see if I had spinal stenosis...both tests came back negative..which is a good thing..but, leaves the doctor scratching his head..I am going to the chiropractor..and taking 3 mgs of prednisone a day...and TRYING to get a few pounds off..I think a few pounds would make a world of difference..but, it's a nightmare getting it off at my age...and I am not that big..but, could stand to lose 10 pounds...at least I want to see if it makes a difference...just got back from a 9 day vaca in FL...that was a challenge..but, as the signifcant other in my life says...you can feel crappy wherever you are...so true..LOL Enjoyed it though and got through the tough times.

Best to you all...keep posting..it is so helpful to have company in this.

Lynn


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susanr1212 4 years ago

Hi everyone. My mood has been a bit better, not too many crying jags. lol Read in the paper today that Social Security Disability payments will run dry in 4 years. Now that is great news, seeing that I might be disabled before I can fully retire...or get laid off, which may happen in 2 years, since the economy is affecting the medical industry now, that I work in, and many departments are going to be affected. Just another wonderful day. But I am smiling. What else can I do? At least for today, none of this is happening. So I can't worry about everything. Have a nice day all, as nice as can be expected. :)


Tanya 4 years ago

DON'T WORRY about things . . . worry doesn't do you any good as things (out of your control) will happen anyway so don't waste time and energy worrying about things that you have no control over.


susanr1212 profile image

susanr1212 4 years ago

I know, but that is easier said than done. Worry can't be controlled much either, at least for me. It's in my nature. :)


Tanya 4 years ago

I know what you mean Susan - I used to be a bit of a worrier and it was my Grandmother (many years ago now) who told me that worrying was just a waste of good energy, so I have been able (over the years), to manage not worrying about things I have no control over . . . which means everything other than my own words and actions! If you can do that you should find that you have much more time to focus on things that are important to you - like getting well and your family. :-)


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susanr1212 4 years ago

That is so true, and I have told myself the same thing. My daughter is even worse than me, so we feed off each other, unfortunately.


Tanya 4 years ago

I know what you mean - my daughter is 22 and she is like a mirror image of me (way prettier, slimmer and younger of course!) and when she says things like "I'm like you and can't sleep properly" it has me replying quickly "rubbish, you're nothing like me" (yeah right!) because I know that if I don't nip it in the bud she will become all the things about me that bothers me . . . and I wouldn't wish that on one I love. :-)


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susanr1212 4 years ago

lol That's funny, in a way. We all say we won't be like our moms's, even though we love them, but we are, both the good and the annoying things. Happened to me, and now my daughter. But I am MUCH more open than my mother was...she came from the old school, some things you just didn't talk about. Me, I am the complete opposite...My daughter wishes I would shut up! But we are also best friends. She is 27. And unfortunately, she also had some medical conditions that almost mimic mine, like maybe Fibro, and other things I don't have. Poor thing. :(


Ron 4 years ago

That's what I call a "great hub". Thank you so much.

Ron from Fitness Tips http://www.intervalstraining.net


Tanya 4 years ago

My daughter wishes I would shut up too . . . especially when I go around the supermarket poking in ladies clothing labels and advising them which product to buy! It's nice to talk about something other than the dreaded PMR!! Grrr.....


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susanr1212 4 years ago

Yes, it sure is! Very hard to do though, but I am finding the more I talk about it, the worse it feels. Guess it is the constant reminder that you are in pain...I feel better when I do other things to take my mind off of it. By the way, just a quick question...do you find that your feet and ankles swell if you wear regular shoes? They aren't all that tight, and they are flats. I don't usually have this problem if I stick to tennis shoes. Take care. :)


Tanya 4 years ago

No - I don't have trouble with swelling feet, but then again, I don't really think that they can say 100% that I do have PMR. It started as PMR, then they said seronegative arthritis (no way - wrong symptoms) now my rheumatologist says that he thinks it is spondolytis? I think that these things are all so interlinked with such similar symptoms (for alot of them) that it really is hit or miss with a correct diagnosis. Does anybody else feel this way?


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susanr1212 4 years ago

I think there is still much to be learned about PMR and all other ailments that feel similar. I think it is a guessing game, really. I did read thought that steroids can make feet and ankles swell. So I suppose I will just deal with the occasional "Kankle" haha :)


CinnamonSpice 4 years ago

Hi all...Susan...my feet NEVER swelled..my last plane trip...they did...but, they went back to normal. I know that is not unusual..but, for me it was. Could be the prednisone? I am down to one..one day...two the next and so on..I think the pain is worse since I started that on Monday...sometimes it's so hard to tell...may go back to the two a day for another couple weeks and see if it stablizes. Yep...I looked at my feet and wondered...whose feet are those..lol


Blake 4 years ago

Hi all, I got PMR about 18 months ago........what a ride! couldn`t even put my socks on in the beginning. Started on 20mgs of Pred a day now down to 10mgs...Back to work, and so sore in the mornings. I can almost feel the PMR traveling around my body at times,sholders,hands,back,legs,even feet at times. I just keep on trucking along. My thoughts on PmR are it is very stress related,to much stress in my life and my body lets me know.

My father had it when he was about 69 yrs old, right after my Mother died,

soooooooo be kind to your self,learn to say no to people, you can`t do it all,

+++++++ your worth it all.

Thanks for letting me rant..... Blake


Tanya 4 years ago

Physical stress brought mine on - I had to go to work and ask the other staff (ladies) to do my bra up, and sometimes I couldn't even put my knickers on . . . so had to go commando!! How's that for embarrassing!!


syl-h 4 years ago

Blake and Tanya thanks for your stories, they made me laugh cos they are so true!

Here are a couple of my embarrassing moments with clothing - getting changed under a towel at the beach and I can't get my wet swimsuit off my top half never mind get my knickers back on cos I'm all cold and damp and I need help from someone else. There is nothing discreet about that.

Taking my shoes off at airport security and trying to put them on again with nowhere to sit down so I get all flustered and flushed and look very suspiscious. I do the most impossible contortions to complete this simple task. Most of my shoes are flat practical comfortable things with laces, so there's no avoiding this.

What are your embarrassing stories?


susanr1212 profile image

susanr1212 4 years ago

my embarrassing story is looking like a penguin when I walk because it hurts...but I am not as cute as a penguin.


Tanya 4 years ago

. . . none of us are as cute as a penguin - unfortunately!


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susanr1212 4 years ago

lol. :)


Didge profile image

Didge 4 years ago from Southern England

What a fantastic hub: Thank you for sharing.


Blake 4 years ago

Just thought I`d mention, now that my Prednisone cheeks have gotten soooooooooooo BIG,more women pinch my face and say I must have been a cute baby.... :----)

Blake


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susanr1212 4 years ago

Thx for the laugh Blake! We can always use them. Take care all.


Tanya 4 years ago

That is funny Blake - I guess the soooooo BIG face must have puffed out the wrinkles - that's gotta be a plus?! :-)


Morgain 4 years ago

I have read this entire conversation from the beginning. I especially liked following some of you from the horror of your beginning to remission. I have had the classic signs of PMR for about 3 months. Just this week, the "working dx" was made. I still need to see a rheumy for verification. I immediately began an anti-inflamatory diet and fish oil supplementation. I realize I will need to go on prednisone, but would like to keep the duration as short as possible. It is quite possible that I am living in denial a bit. My question, has anyone tried the enzyme, serrapeptase? This is gained a lot of attention lately, but there is not an abundance of information out there that is not biased.


CinnamonSpice 4 years ago

I just googled it...wonder what happens when you take it WITH prednisone...if someone tries it I would love to hear their results. Amazon carries it and there are reviews there..:)

There is really quite a bit of info...but, I prefer knowing someone who has PMR and has tried it to weigh in...no pun intended...:)


Morgain 4 years ago

Well, I did order some from Amazon. I intend to start immediately. What I did find on the internet was two individuals that tried it; one male and one female. They both claimed that they were off prednisone within 3 to 6 months. Two other testimonials stated they took it instead of prednisone with almost complete pain relief within 2 to 4 weeks. My intention is to move forward and try this. I cannot bear to wait the 2 to 4 weeks to see if the serrepeptase works. Also, the fatigue I am dealing with does not help when I have to work. I guess I really will not know until the weaning process is underway. It may be another false claim, but I will keep you posted.


CinnamonSpice 4 years ago

That would be terrific Morgain...I have had it for over two years now...and on a VERY low dose of prednisone..but, still have plenty of pain.


plsoccer 4 years ago

I have been reading this page for quite awhile now but felt the need to finally post. I developed PMR over 3 years ago and went through all the predisone, trips to Rheumatologist, thinking it was RA (extra drugs that did nothing) and finally came off the predisone last summer. I still had morning stiffness and a couple days a month were worse than others. My husband still thinks my hormones play a part in a "flare up", as I am just starting through menopause. A little over 2 months ago I read about boswellia in Good Housekeeping and they suggested it would help arthritis, inflamation, etc, so I started taking it (Solaray brand from my local healthfood store). The relief was remarkable, but I was not sure whether it was the boswellia or if I was just in remission. Well I went to the store last week and they were out of it and I had to order. Just 4 days into no pills and I can feel some stiffness coming back. Can't wait until they are in. May help others - please check it out!


Tanya 4 years ago

Well - it's 'official' . . . I don't have PMR! That's a relief . . . just wish they knew what it is - one thing I know is that after about 18 months on prednisone and feeling like s**t most of the time - within 12 hours of being put on Naproxen (2 x 500ml day) anti-inflammatories I felt SO much better and still can't believe how good I feel. I can turn over in bed, dry my feet and put coats/jumpers on without too much discomfort......


susanr1212 profile image

susanr1212 4 years ago

congrats Tanya! BTW, thx for the email. I replied but never heard back from you. :(


Tanya 4 years ago

Sorry Susan - I did get your reply and haven't forgotten . . . just thought I would wait until I had something intelligent to say . . . it could be a LONG wait! :-)


Paula 4 years ago

Hi

Just thought I would share recent experience. My doctor referred me to Talking Therapies, a cognitive behaviour therapy process to help people to deal with and learn to live with pain by planning coping strategies. I have been diagnosed with PMR for around a year now and been on Prednisolone for 9 months, initially at 20 but now down to 6mg. The pain increases a lot with each reduction and I find it increasingly difficult to deal with. A normally positive person, I found that I had no positive feelings - all were negative so the pain got worse. After 6 weeks, I am now much more positive and feeling less pain and more able to cope with the level of pain I do experience. I am even thinking of planning my next reduction down to 5 mg. I would say give therapy a go cos it worked for me and I went into it with a very sceptical view.

Must add, I love reading this blog, it helps me so much to read other peoples experiences.

Paula x


CinnamonSpice 4 years ago

Thanks for sharing Paula. I am happy to hear it had positive results. I will look into it in my area.


Tanya 4 years ago

Hi Paula

When I was first prescribed prednisone I was told that to decrease more than one ml per month would lead to pain as this was too fast a time frame for the decrease. Looking at your decrease rate it seems you must be decreasing each ml at around the 3 week mark which is pretty quick?


ernestine 4 years ago

I haven't written for a while but I am also about 9 months in with my pmr and I had to stay on 25 mg of prednisone for about 5 months. I could not reduce even though I tried, but it is not worth it getting the pains back. That's why we are taking this drug.However I have now been able to slowly reduce. I did 1mg a week or a fortnight depending on how it felt and now I am on 7mg.But since I hit the 10 mg I found that I needed to reduce by .5 or the pain would come back. I am also taking methotrexate since the beginning. I have started taking serrapeptase about three weeks ago and I think it is working very well. I want to get off the metho because I am getting neuralgia in all my teeth when I come home from walking the dog in the cold winter air. I will talk to my rheumatologist about that in 2 weeks. I also take heaps of supplements and meditate every day and do yoga every day, plus acupuncture once a week, which I now only have once a fortnight. I am hoping and psyching myself to be better by the end of the year.


Damselfly profile image

Damselfly 4 years ago from Columbia, MO Author

This has become one of the most supportive discussions I have ever read. Thank you all for your contributions and for openly sharing your personal experiences. I have been off my prednisone for almost three years after taking it for that long. I rarely have a flare up these days. When they come, it feels just like the first time. Today the pain is short lived and relieved through trigger point therapy. As I relax, I can breath through the pain to relief.

Blessings to all those who visit this page.


Sam 4 years ago

Thank you for sharing such useful info.

I have been reading comments from PMR patients and majority of them are at least around in their 40s, but I am 26 (female) and about to be diagnosed with PMR :/ I am vegan, non-smoker, fitness enthusiast and love practicing Bikram yoga and yet I am suffering from this terrible pain.

It has been 8 months that I went through spine scans, blood tests, physiotherapy, chiropractor and saw a rheumatologist who did not do any tests what-so-ever and simply after speaking to me for half an hour declared that my pain was psychological related to stress because I am very ambitious as a person. I convinced myself of that and practiced yoga every single day and saw a chiropractor twice to relieve the stress and was good to go until my pain resurfaced after 4 months with many additional symptoms like headaches, nausea, bruises, shoulder and neck pain, burning sensation throughout my body like I have been burnt and need an ice patch to sooth my body. I feel disoriented, depress, trouble sleeping, weakness that I can't even lift my plates or open up a box. I am frustrated and feel irritated and aggressive due to pain. I have lost interest in everything and I'm soon to start writing my master's dissertation but I have lost self confidence. I want to seek emotional help to cope with the crisis as it is effecting my studies, but I don't know what to do about it. My peers blame it on my vegan diet without even knowing what they are talking about so I cannot open up to anyone in my circle. It is so frustrating. I am too young for this. This is unfair! :/


Tanya 4 years ago

Hi Sam - WOW! That's quite a story - I can't believe you have been diagnosed without being tested further. My Rheumatologist has done so many tests it's crazy - I'm 53 and he says I'm too young (ha!) so refuses to believe that I have PMR - he is however, unable to give me any other diagnosis, so we keep changing medication and doing more tests (I have had this for 2yrs now). The one thing that I have noticed over the last 2yrs is that if I can truly 'relax' and not overthink the pain I do actually feel so much better. Unfortunately my body keeps remembering the pain so it's not easy to relax - I have asked my Rheumatologist to prescribe some form of relaxation medication . . . he just looks at me like I'm joking!! I do hope you feel better soon - I think I may try some alternative medicine next....


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susanr1212 4 years ago

Hi Tanya and everyone. I have been out of commission for about 3 months. Off work on disability for something not related to PMR. But while out, I was gradually decreasing my Prednisone from 7mg a day down to 5, and sometimes 3. Feel terrible, and they took my sed rate again, and it went up to 40 from 28, so I guess I need to keep at 5mg or higher. I am so disgusted right now. Take care all.


syl-h 4 years ago

Susan, 3 months is a long time, I'm sorry to hear this and that reducing prednisone hasn't worked out for you.

I don't really understand the ESR anad CRP levels - I know mine are high, but they are gradually coming down and I feel so much better at the moment - I'm not going to worry about them. My ESR was over a hundred mid-year and is now down to 40+. I felt dreadful in July and had to increase prednisone to 5mg but I've slowly been whittling it down and I'm taking just 1mg per day. My goal is to get to zero in 4 to 6 weeks. I'm very exctited by this possibility. I've been on methotrexate too since August and I think this has really helped me. Well along with swimming, walking, the gym, regular massage etc etc. The rheumatologist says he wants to keep me on methotrexate for another year (!) after I come off prednisone just in case of another relapse.

It's been nearly two and a half years since my first symptoms and it's so good to feel my health returning. I'm not well yet, but I appreciate every bit of muscle ease that I can reclaim, each night that I can have an unbroken sleep, each day I feel energy instead of fatigue. There is light at the end of the tunnel, I've seen it!


susanr1212 profile image

susanr1212 4 years ago

Thx. I was out for another reason, but while out my sed rate went up. got an appt next month. Meantime, I will just keep on keeping on. glad you are feeling better.


susanr1212 3 years ago

everyone have a Merry Christmas!


Deborah 3 years ago

Thank you for your very informative article. It took many months for me to gather information about Polymyalgia Rheumatica that you summarized so articulately in your article. It took over eight years (age 51), a number of physicians, misdiagnoses and mistreatment, loss of work and my life savings before I was properly and accurately diagnosed (age 60). A great Rheumatologist and his small team of medical students quickly diagnosed me before even looking at my labs. My symptoms were classic for PMR and a bit beyond the usual due to my extended illness without proper treatment. I can’t explain the elation that I felt when someone finally listened to me without looking at me like I was crazy. The doctor informed me that it is somewhat rare for Africans and African-Americans to be diagnosed with Polymyalgia Rheumatica. No physician ever asked me about my heritage, which along with African, includes Northern European grand and great grandparents on both sides. You were lucky that you found a physician so quickly who chose “to treat the symptoms rather than follow an arbitrary standard.” I could write a book about my painful journey. However, I'd rather run (really) and play with my grand kids. Good luck to you. Thank God for Prednisone and Plaquenil.


Jan 3 years ago

Deborah - thanks again for starting this hub, Not sure if this has been mentioned earlier, but there is a very active ~230+ strong Facebook support group for us PMR'ers with a core group of "young 'uns" in their 40's and 50's solidly represented. Feel free to join us if you like at https://www.facebook.com/groups/232429015956/ or enter "polymyalgia rheumatica" in the Facebook search window and "Group" should come up near the top.


susanr1212 profile image

susanr1212 3 years ago

Deborah, thank you so much for the FB link! i have joined! YAY! Very good information there. No to mention, found out I am not the only one with the occational itchy foot syndrome!

Other updates, went back to 20mg of prednisone and a steroid shot that got me through the holidays with ease. dropped down to 15mg this week, with my sed rate down to 15. Still hurt though, but not as bad. But now my back and neck hurt more since lowering my dosage this week. doctor wants me to try a muscle relaxer for sleep and this other pain med...we will see. Take care all.


CinnamonSpice 3 years ago

I joined the FB page too...:) One thing that has been instrumental in helping me sleep is lavender essential oil...I sprinkle it on my pillowcase...I have been sleeping SO much better.


CinnamonSpice 3 years ago

I have an itchy foot!...just the four toes on my right foot...where does your's itch? Coconut oil seems to help alot...I tried everything...hydrogen peroxide after every shower...Skin So Soft by Avon helps some too...Tea Tree oil and apple cider vinegar didn't seem to help at all.


susanr1212 profile image

susanr1212 3 years ago

My foot usually itches on the bottom or the sides. Occasionally the top or the toes. Last week, my ankle itched, and stupid me, I used my big toenail to scratch it, which of course left a scab. Which of course turned red and inflamed. Have been using antibiotic cream and bandages on it. Scab came off, still a bit red. I'm afraid that if it doesn't get better by next week, I will need to go to the doctor. With steroids, wounds do not heal very well at times. Don't want a staph infection, for sure.


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susanr1212 3 years ago

ooops, just noticed I thanked Deborah for the link, when in fact I need to thank Jan. Thanks Jan!!! :)


CinnamonSpice 3 years ago

Hi Sue...yes...the top where the toes meet the foot is another place...mostly at night...enough to drive you nuts...re sore spot...neosporin should help?....as I recall you could soak it in something...lol...might want to google it...epsom salts?...to draw out the inflamation.


Ernestine 3 years ago

Hi all, thanks for your support. It has been 15 months since my diagnosis with pmr. I was on 25mg pred for 6 months. Reduced from there with 1 mg per week for a while but hit a plateau at 10 an another one at 5. I am now trying to down by halves and are alternating from 4.5 to 4 to make the pain bearable to live with. I am still teaching 4 or 5 classes of yoga and practice and meditate every day. I also swim once a week or so, but slowly. I was on Methotrexate but gave it up because of the side effects and then I lost half my hair, which is growing back now, thank goodness. I feel and look a lot better than last year. I also found that not eating any grains helped with reducing puffiness and increased my energy as well. I love and hate prednisolone. I also use coconut oil on my skin and Marrocan oil on my hair and feet as the pred dries everything out so much. My feet are itchy because they are dry and flaky. The oil really helps. I just signed up to the fb page too, so thanks.


RosieC47 3 years ago

I was recently diagnosed with PMR after constantly struggling pain throughout my body. Have had cortisone shots in the past to relieve severe pain in my hips and shoulder. I think I have had this for a few years without it being diagnosed. My rheumatologist put me on 30mg prednisone with a reduction of 5mg each week, then every other week. My doc said my CRP reading was staggeringly high but my sed rate was normal, which he said was baffling. I felt all the pain subsiding almost immediately which was great but at the same time I started shaking and trembling and now a month later it hasn't stopped. I find it totally incapacitating and the only thing that seems to help is lying down. Usually by the end of the day it starts to subside. Has anyone else suffered from this side effect from prednisone? My face is puffing up as well. One upside to that, is a remark from one of my best friends the other day....she said you don't have any wrinkles! Yeah, they're all puffed out! I have spoken to my rheumatologist about the shaking and she advised me to skip the week of 25mg and go down to 20mg for two weeks. I am now on 15mg for 2 weeks and will be dropping down to 10mg at the end of this were, so I am hoping it will make a difference. Even though I take the meds usually around 7:30am I still struggle to sleep at night. I have also found that some of the pain is returning again, although still relatively mild. I see the rheumatologist again next week.


Tanya 3 years ago

I've had quite a journey since Xmas - my PMR has burnt itself out (thank goodness) . . . only to be left with another form of arthritis (never knew this could happen)! Have just had 3wks off work (in and out of hospital getting steroid shots everywhere that's inflammed) and am finally (after more than 2yrs) starting to see the light at the end of the tunnel. I have totally changed my diet (cut out ALL sugar/processed foods/grains & wheat), and am basically eating fish (3-5 times per week), veges and fruit. I am absolutely amazed by how much better I feel. I've just finished reading a book called "Win the war within" about inflammation - well worth the read.


syl-h 3 years ago

I'm glad you're feeling so much better Tanya and PMR has gone, good for you. Although it stinks that you have another kind of arthritis and lots more pain. Fish eh. Hmm. What kind of fish? Does that include shellfish? Tinned fish? I've been trying to increase my fish intake, I take cod liver oil to help anyway. Who wrote the book "Win the war within"?

I've managed to be prednisone free for a month now, although my new Rheumatologist (I finally got into the public system and left my very expensive but excellent Rheumatologist) wants me to continue on 1mg a day to stave off the possibility of a relapse. I'm really happy to be pred free. Although I am a bit stiffer in the mornings in the past week, I'm trying to just live through it, I so don't want to get back on pred. Two and a half years is enough.

My goal is to reduce methotrexate now and be off this by the end of the year.

Rosie be careful when your Rheumatologist tells you to reduce prednisone by 10mg. It can work,but it can be hell. If you are reducing each fortnight then try to reduce by 1mg a day over 10 or so days, or if it's 5mg then 1mg every second day over 10 or so days. It's so much easier on your body than a sudden drop. I found if I played around with how I reduced the pred, sometimes I would drop 1mg one day then take it the next, drop again the next until my body was used to the new level. That's my experience anyway and it worked for me.

Good luck to all of you. It's a horrible disease but it's comforting to know other people are on the same journey. Thanks for sharing your stories.


tanya 3 years ago

Fish - tinned fish is good, but when eating salmon you need to check the salmon is 'wild' and not farmed.....farmed salmon contains 13x amount (per day) of bad stuff for inflammation!

The book was written in 2006 by a Dr Floyd H Chilton PdD


Anne 3 years ago

Hi everyone..if you are still out there! There appears to have been few posts recently. This site is still the most informative I've found. I have been on Prednisone for almost 2 years and have recently hit the wall at 3.5 mg. For the first time I've felt really depessed and have had to take a break from work as I'm sure stress is a contributer to the flare ups i've had. I'm not sure wether to blame the pred or the poly for how I'm feeling..there are so many things going on. I would love to hear from others who may be going through this as it feels pretty lonely and never ending. I've put my pred up to 5mg ( my dr wanted me to go to 10 mg but I'm really scared to go back to that )


CinnamonSpice 3 years ago

Hi Anne...well, we get notified when someone post..I joined a group on FB...it is REALLY informative...I would suggest you get over there..:) Yes, it's a long road..I managed to get off of it once..only to have to go back..but, when I went back..he said start at 7...and then I weaned sloooooowly off of that..and over three years now..I have been off of it for a few months...don't give up the ship...I have been where you are...I say fight it and find someone supportive you can talk to...it's harder when you look good..:) Best to you...Lynn


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Damselfly 2 years ago from Columbia, MO Author

There isn't much left for me to share after my original story, but I am thankful for this forum and those who have picked up the ball and continued to share both their journey and newer resources.

Because I can identify PMR symptoms, I manage those immediately. The joint pain, distinctly different, requires diligence so that I, too, can get on with my day as I chase and play with my grandchildren.

Be good to yourselves, and remember the time before you were in pain.


Wakedoctor 2 years ago

I was dx with PMR very quickly by my primary care doctor. I was 63 at the time of dx and a white male. I didn't respond to 15 or 20 mg of prednisone, but got a good response at 25 mg. I decreased the dose by 2.5 mg per month until I reached 17.5 mg but then hit a wall and bounced around between 15 and 17.5 for a couple of months. During that time I developed a bigeminal cardiac arrhymmia while on a cruise ship, of course, which freaked me out. A few months later now and than seemed to resolve. I then started reducing by 1.25 mg per month and got down to 12.5 and got stuck again . It seems the lower I got the less I could reduce without the pain recurring to the point of not being able to dress myself standing up. I'm a physician, so getting off prednisone seemed more important to me than being relatively pain free. I'm now at 7.5 mg, trying to go from 8 to 7 turned out to be too difficult. I'm finally sleeping a bit better, don't feel too many other side effects of the prednisone but have sacrificied probably 50 % of my strength and fitness to this illness and the treatment. I am normally a very active person. I play basketball, snowski and wakeboard as well as running and weight training. I have had to give all of that up for the past 11 months. This has been the worse part of this illness for me. I agree with Damselfly from above. It isn't so much weakness but joint pain that limits exercise. I've read everything I can find on PRM and unfortunately there isn't that much known. I've lost a year to this illness so far and am hopeful I won't lose another, but my body and not my mind will determine that.

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