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Polymyalgia Rheumatica - A pain in the neck

Updated on September 6, 2012

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.

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      Wakedoctor 3 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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      Damselfly 3 years ago from Columbia, MO

      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.

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      CinnamonSpice 4 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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      Anne 4 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 )

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      tanya 4 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

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      syl-h 4 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.

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      Tanya 4 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.

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      RosieC47 4 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.

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      Ernestine 4 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.

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      CinnamonSpice 4 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.

    • susanr1212 profile image

      susanr1212 4 years ago

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

    • susanr1212 profile image

      susanr1212 4 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.

    • profile image

      CinnamonSpice 4 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.

    • profile image

      CinnamonSpice 4 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.

    • susanr1212 profile image

      susanr1212 4 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.

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      Jan 4 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.

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      Deborah 4 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.

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      susanr1212 4 years ago

      everyone have a Merry Christmas!

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      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.

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      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

      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.

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      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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      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! :/

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      Damselfly 5 years ago from Columbia, MO

      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.

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      ernestine 5 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.

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      Tanya 5 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?

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      CinnamonSpice 5 years ago

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

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      Paula 5 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

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      Tanya 5 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! :-)

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      susanr1212 5 years ago

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

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      Tanya 5 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......

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      plsoccer 5 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!

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      CinnamonSpice 5 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.

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      Morgain 5 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.

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      CinnamonSpice 5 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...:)

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      Morgain 5 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.

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      Tanya 5 years ago

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

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      susanr1212 5 years ago

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

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      Blake 5 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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      Didge 5 years ago from Southern England

      What a fantastic hub: Thank you for sharing.

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      susanr1212 5 years ago

      lol. :)

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      Tanya 5 years ago

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

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      susanr1212 5 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.

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      syl-h 5 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?

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      Tanya 5 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!!

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      Blake 5 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

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      CinnamonSpice 5 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

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      susanr1212 5 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 :)

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      Tanya 5 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 5 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. :)

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      Tanya 5 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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      Ron 5 years ago

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

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

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      susanr1212 5 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. :(

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      Tanya 5 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 5 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.

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      Tanya 5 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 5 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. :)

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      Tanya 5 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.

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      susanr1212 5 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. :)

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      CinnamonSpice 5 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 5 years ago

      I hear ya!

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      Tanya 5 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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      syl-h 5 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.

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      susanr1212 5 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.

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      tanya 5 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 5 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

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      Tanya 5 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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      syl-h 5 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.

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      susanr1212 5 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.

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      Tanya 5 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 5 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. :)

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      syl-h 5 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 5 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. :(

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      susanr1212 5 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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      nancy103 5 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 5 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. :)

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      susanr1212 5 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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      CinnamonSpice 5 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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      CinnamonSpice 5 years ago

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

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      CinnamonSpice 5 years ago

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

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      syl-h 5 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!

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      susanr1212 5 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.

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      CinnamonSpice 5 years ago

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

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      CinnamonSpice 5 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.

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      susanr1212 5 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.

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      susanr1212 5 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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      queenie 5 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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      CinnamonSpice 5 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?

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      pauline 5 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 ?

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      Steve 5 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.

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      CinnamonSpice 5 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...

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      steve 5 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.

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      deb 5 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 ?

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      rainbow 5 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!

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      CinnamomSpice 5 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.

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      Tanya 5 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?

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      CinnamonSpice 5 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.

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      syl-h 5 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?

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      CinnamonSpice 5 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...

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      Barb 5 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.