Prednisone: Effects, Side Effects and How it Changed My Life Forever

There is no doubt that prednisone saves lives and probably saved mine. But this prescription steroid, when taken in the long term, produces some effects, side effects and serious complications that may create lifelong problems. Most of the articles I write about medical topics are written from the perspective of a doctor, explaining to others what I know. This one is personal, though. In the last seven years, since being diagnosed with ulcerative colitis, I spent quite a bit of time as a patient and parts of my story  are woven into the fabric of information about this prednisone.

Prescriptions of prednisone usually are written for

  • asthma and other lung conditions
  • autoimmune diseases like rheumatoid arthritis, lupus, inflammatory bowel disease
  • allergic reactions
  • skin diseases

Prednisone suppresses the body's immune response and inflammation, allowing relief from symptoms when the immune system is "confused" (as in my case) or overactive.

Prednisone is an catabolic steroid. That means it breaks down body tissue (like muscle and bone) rather than build it up. Anabolic steroids are the type illegally used by bodybuilders and athletes since they have the opposite effect and help build muscle.


Have you ever taken prednisone for any reason?

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Osteopenia and Fractures Remain a Risk after Prednisone is Stopped

Twisted and broke my 5th metatarsal in my foot due to decreased bone density. This happened over a year after I stopped taking it.
Twisted and broke my 5th metatarsal in my foot due to decreased bone density. This happened over a year after I stopped taking it.

Background

I was diagnosed with ulcerative colitis in 2003. At first, I had a pretty mild case and used only mild medications to treat it. Ulcerative colitis is an autoimmune disease where the immune system mistakenly attacks the colon. The cause is unknown, but current evidence shows that it's probably a combination of genetic predisposition and an environmental trigger. Along with Crohn's disease, UC is an inflammatory bowel disease. These inflammatory bowel diseases can be life-threatening. They should not be confused with irritable bowel syndrome, an often debilitating condition, which is not life-threatening.

When I got pregnant with my first child, the colitis got worse. The mild medications stopped working. Because prednisone was the safest drug for UC during pregnancy (that would work), I started a low-dose regimen. No problem.

Unfortunately, the colitis continued to get worse and I started the on and off, up and down cycles of prednisone use. Other medications would only work for a short time or not at all. During my second pregnancy, the colitis became pretty bad. It would improve on prednisone, but nothing else worked. I was requiring quite high doses at this point. Cumulatively, I spent the better part of two years on moderately high to high doses of the medication, which is why I ended up with lifelong consequences. Prednisone saved my life, but changed it forever.

I Felt Great, Most of the Time

While on prednisone, most of the time I felt great. I hoped that after I had my baby, I would improve and get a remission. I didn't and needed to continue the prednisone while breastfeeding. Luckily, the mental changes of prednisone means I didn't need much sleep and the manic energy made me quite productive. I would get up before 5am to exercise. I knew that weight gain was an expected side effect of prednisone and I was determined not to gain weight so I would just spend time that would normally be spent asleep, exercising instead. And with all the energy I had, I would exercise and not gain weight so that shouldn't be a problem. WRONG.

I worked out 2 hours a day, four or more days a week, hard. I realized I was still gaining weight, so I limited my calories to 1400 per day on non-workout days and 1550 calories a day on workout days, then cut back further when that didn't work. Surely, I would lose some of the weight and stop gaining. WRONG. I became depressed that my efforts were failing. I gained TWENTY pounds in a year and the depression never abated. I figured out later that the expected weight gain for the dosage and length of use would be closer to 50 or 60 pounds of weight gain. Still, I found it hard to be happy about only gaining 20 pounds of fat while working out like a maniac and limiting calories in spite of the increased appetite.

My face was puffy, my hands were jittery and I was irritable (exercise saved me here, too). I came to the very unscientific conclusion that prednisone enabled your body to convert even the air you breathe to fat.

PREDNISONE SUMMARY

Drug Class: Corticosteroid, specifically glucocorticoid

Mechanism of Action: Works at the DNA level in the nucleus of cells to suppress inflammatory mediators. This is a simplification of a complicated process

Uses: Used to suppress the immune system and to suppress inflammation

Common Conditions Treated: Ulcerative colitis and Crohn's disease, rheumatoid arthritis, ashtma, lupus, psoriasis, allergic reactions, many others

Side Effects: Affect nearly every body part and organ system (see discussion and links)

Dosing: Usually 5 to 60 mg per day. This dose is adjusted to the needs of the patient. Courses longer than a week need to be tapered to allow the adrenal glands to start making their own steroids again. If this isn't done, life-threatening, low blood pressure and other reactions may occur.

My Other Side Effects

The list of potential side effects of prednisone exceeds 100 items. Every system in the body is affected. Side effects are possible in anyone taking the medication, but incidence of side effects and complications increases at doses over 10 mg per day and/or a course lasting longer than about two weeks.

Other than the weight gain, I did have increased energy and a sense of well-being, which is normally not a bad thing. I decided one day that I should change the fan mechanism in my laptop computer (which was almost dead anyway). This would normally be ok, but in this particular model, the fan was buried under layers of electronics and panels and circuitry. With the prednisone energy, as I called it, I could not be bothered to carefully diagram or photograph where the parts came from. I got the new fan in, but when I got the computer back together, I had over 60 leftover little screws. Yep, 60! Uh, no, it didn't work.

The worst thing I have to deal with as a long-term complication is osteoporosis at the age of 40. This one really upsets me as I already fractured my foot as a result of a minor injury. I like to ski and hike and so on, but now I have to worry that every fall or slip is going to result in a broken bone. I worry about fracturing a hip before I'm 50. Of all the problems I've had with prednisone, this is the one that makes me angry. I remind myself that I really didn't have a choice due to a combination of circumstances, but what a trade-off.

I have since had my colon (yep, the whole thing- that's another story) removed to rid me of the colitis, but prednisone is the gift that keeps on giving years after you stop taking it.

Partial List of Prednisone Side Effects and Complications

There are so many potential side effects and complications of prednisone that I won't bother listing them here. They can be found in medical books and on medical and pharmaceutical websites. Luckily, most of the side effects resolve shortly after stopping prednisone. These are just a few examples by body system.

  • Neuro/Psych - mental status changes such as depression, anxiety, mania, euphoria, nightmares, memory loss and psychosis.
  • Ophthalmic (eyes) - blurred vision, cataracts and glaucoma
  • Cardiac - changes in heart rate, worsening of heart failure, blood clots, high blood pressure
  • Musculo-Skeletal - decreased bone density and osteoporosis, avascular necrosis of the hip, muscle breakdown and protein loss
  • Skin & Hair - easy bruising, hair loss, fragile skin, acne, facial hair in women
  • Endocrine & Metabolic - Adrenal insufficiency (can lead to death if prednisone is suddenly stopped, instead of being tapered), sodium and water retention, disturbances in potassium, weight gain, glucose intolerance and diabetes
  • and so on and so on. See the Drugs.com link for a more thorough list as it quite extensive.

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Comments 80 comments

melpor profile image

melpor 5 years ago from New Jersey, USA

This is another good and informative hub. I am learning a lot from your hubs. My sister-in-law was on Prednisone due to Lupus and I definitely remembered her complaining about some of these side effects.


Austinstar profile image

Austinstar 5 years ago from Somewhere in the universe

What a disaster! But I know for a fact that you can gain weight just by breathing.

Sounds like you are very courageous to deal with such a bad disease.


TahoeDoc profile image

TahoeDoc 5 years ago from Lake Tahoe, California Author

Thanks Melpor & Austin. I feel lucky overall. I had the colon removed and have been on no drugs for over a year. I just have to deal with the "leftover" effects. Could be a lot worse.

You can imagine what a fun patient I was though, being a doctor and all, LOL.


OpinionDuck profile image

OpinionDuck 5 years ago

Austin

This is another example of why the FDA is in bed with the drug companies, and while the country no longer allows tobacco or alcohol ads, they don't care about prescription drug ads.

Prednisone has been around for a long time, and it is a knee jerk prescription from doctors. Yet at the same time the doctors bad mouth natural remedies. Not sure about prednisone and a natural remedy to replace it, but in general there should be more emphasis on non prescription solutions. Theer should also be more focus by doctors on the side effects when prescribing any drug.

I was given Cortisone for my Eczema years ago, it never cured it, there was only temporary relief as long as I took it. They wean you off of it by dropping the number of pills per day, until you stop. This could take weeks, and then when I was down to a half a tablet a day, I could get another attack.

My opinion on much of the prescription drugs out there is that they are like lumps in a carpet. The object is to move the lump somewhere else, hopefully where you can't see it, but it is still there. It will pop into view eventually, but there will be no realization that it is the same lump in a different location.

Good one.


TahoeDoc profile image

TahoeDoc 5 years ago from Lake Tahoe, California Author

Just a couple comments.

1. I agree that prescription drug ads on tv are more harmful than good.

2). You are entitled to your opinion, but unless you are a doctor, you probably don't know for real what motivates them, allthough I find that most people seem to think they do. I tried "non-prescription" remedies until my blood count dropped so low that I was having symptoms and was having a hard time functioning. Didn't work. Thank goodness prescriptions were there to save me. Prednisone is prescribed because it works, sometimes when nothing else will, as in my case. All docs know it has bad side-effects and would love to get their patients off as quickly as possible. It's not always possible.***Knowing the bad effects of prednisone, if there was any natural substitute, I would have taken it.*** However, even a natural substitute that suppresses the immune system is going to also have bad side effects, even if they aren't the same as prednisone's. It's a function of suppressing the immune system, which is what is necessary in autoimmmune diseases.

3). I agree, prednisone is not a cure. It suppresses inflammation and immunity. In the case of an allergic reaction, for example, this helps the body get the problem under control so it can heal itself. Often the problem is gone by the time the prednisone is stopped. In other cases, like your eczema and my colitis, the body just can't do what the drug did. The disease is still there and we weren't lucky enough to be among those whose bodies could "take over" from there, thus the symptoms returned.

4). I'm sorry you've heard doctors "bad mouth natural remedies". Most doctors I know (that would be in the hundreds, maybe a thousand) would be open to natural rememdies that worked. The problem is people want the doctor to tell them something that we don't know...that natural rememdies work. If we knew they worked they would be called medicine. Contrary to popular belief, we docs don't get a kickback from the drug companies for every script we write.

I'm not "picking on" OpinionDuck here and he/she certainly makes some good points, but want people to know that docs aren't all that bad. Mostly, they DO want to help and that IS their (our) motivation, really. If you go to a doc with a problem that can be helped by a prescription, you are probably going to get one. Of course drugs have side effects, so would "natural" remedies that do the same thing.

Ironically, when docs don't give a prescription, we get this "I went to the doctor for this cold and he told me I to get more rest and fluids, didn't even give me a prescription. What a quack."

If you'd like a humorous look at this, please watch this...

http://www.youtube.com/watch?v=y1yxDWxUIM0&playnex...

Thanks for listening :))


TahoeDoc profile image

TahoeDoc 5 years ago from Lake Tahoe, California Author

Oh, yeah...on the video. gotta watch most of it to see why it's relevant here. And I should warn about the foul language too, although I get the feeling no one here would be too easily offended.

Thanks OpinionDuck for joining the conversation :)


OpinionDuck profile image

OpinionDuck 5 years ago

Tahoe Doc

My mother and father in law died as the result of doctors, hospitals and even the nursing care.

They didn't have a clue as to what they were doing as is the case with most of the doctors. Yes they know a lot but much of it is knee jerk and run by simple procedures that you can get right off the internet.

Eczema and Psoriasis have remained mysteries to the medical profession for over a half century.

Jerry Lewis would have to live to be two hundred years old before there will be a cure for MD.

You don't have to be a chicken to judge an egg.

I watched my father law go into a hospital with a broken femur, and three months later in the hospital die.

He had agreed to all the procedures that the doctors suggested. The femur had broken because it was at the end of the shaft from a previous hip replacement. The bone there just died and crashed. For a year before that hip was causing him to be unstable in his walk, but his orthopedic doctor never found anything in more than several examinations in that year.

After the hip was again replaced to fix the broken bone and because the previous hip replacement was loose.

He was told he had to stay off the leg for six to eight weeks and during that time he retained water, We are talking about twenty pounds of water. The doctor and the hospitals ran their usual protocol of diuretics but it didn't work. He spent his entire stay in the hospital on oxygen. In the final month of his life they had blown out his kidneys, so he was on an every other day of dialysis. It was shortly after one of these dialysis treatments that he died unexmpectedly even by his doctor.

The disalysis treatments weren't even reducing the water retention. He had a team of doctors from different specialties and they were useless. They sent in the alternates during the weekends and holidays as well as some weeks of the months. If was during the fourth of July holiday that he had a significant turn for the worse. Up to that point he was doing well with therapy, then bedridden.

He had trouble breathing so they put a mask that they use for sleep apnea, but that didn't work and it was extremely difficult for him to wear it for extended time periods.

All the doctors coming to visit him went through the same ritual no matter what there specialty.

Check his breathing, ask him some of the same questions as the other doctors and leave. There was usually no plan given to the family. The day that he died he had been in ICU for about a week and they were going to move him back to his room. There was no mention that he would die.

The whole medical system is pathethic, the hospital is run by insurance and insurance wants you out of the hospital whether you are better or not.

The day that my mother died, I had talked with her doctor and I said I was against doing the procedure he had suggested. He went God on me and caustic because I challenged his decision. She died from that procedure that day.

Chickens don't eat eggs, people do.

Don't ever become a patient.


Anne Nowlin 5 years ago

Prednisone, "When it is good, its very, very very good; when it's bad, it's horrid!" In many ways, prednisone is a life-saver (thinking of the child with asthma) but we must not ignore the downsides of steroid therapy. One in particular I'd like to mention is the steroid effect on bones, bone-thinning in particular.

I'd imagine that TahoeDoc has a more scientific opinion about this, but my comments are based on personal experience. I was given large doses of steroids to suppress an adverse medication reaction and it probably saved my life. Then, I was given steroids when I was diagnosed with lupus (SLE). That was it for the steroids.

Some years later, I developed pain in my joints that wasn't the same as my lupus joint aches. (Tahoe, you see where I'm going here, I know you do!). Several MRIs later, I was diagnosed with avascular necrosis, a condition in which oxygen and nutrient-carrying blood doesn't get to the bones and the bone dies. Why? Nobody has a clear answer, but steroids are strongly suspected.

Avascular necrosis or osteonecrosis has changed my life forever. Because of the pain, I've not been able to exercise a lot and because of lack of exercise and as a side effect of prednisone, I experienced serious weight gain of @ 70#. That lead to the development of pulmonary hypertension.

Now, I'm taking a water exercise class; because of the pulmonary hypertension, need to see a cardiologist. I don't take steroids now and haven't for a good ten years, but their damage can be permanent. That's why I say, "when they're good, they're very, very good; but when they're bad, they're horrid!..."

If you need them, you need them, and take them. But don't take them on a lark and always be in touch with your doctor about concerns/side effects, and follow up. Advocate for you.

Does anyone know what the FDAs position on the side effects of steroids? R and D has been done and drug manufacturers know of the adverse affects of steroids. Is there research being done to find an alternate medication with fewer side effects?


TahoeDoc profile image

TahoeDoc 5 years ago from Lake Tahoe, California Author

Hey all, thanks for the discussion.

OD- believe me, I totally get it. I've been on both (actually all) sides - doctor, patient, daughter of patients, fighting with insurance companies, trying to find less toxic treatments. I have been there. I'm sorry you had such horrible experiences.

Anne - I think your first sentence says it perfectly about prednisone AND many other therapies. It sucks, there are severe, life-altering consequences as I know having osteoporosis at 40. But, I ask myself, "what is the alternative?" I could have gotten sicker and sicker until I died from a complication of the disease and left my children without a mother. Avascular necrosis is my biggest fear and I will never be free of the risk since I was on so much pred for so long. I know that. Everytime I take my kids skiing or feel a "twinge" in a hip, I have an alarm of fear going off in my head that it could be. I will never be free. But, I do not think my docs were cold and uncaring in their treatment of me. They did the best they could with what was available to them.

*Sometimes we only have choices between two things that suck... disease or treatment, both of which have complications. I get it. I hate it, too. But that's just the way it is until a better alternative comes along. Will it? I don't know.

**Everyone** Medicine and medical care are not perfect, far from it. In another 100 years, our treatments will probably seem primitive and cruel, much like we look at the treatments of long ago. I wish things were better, but sometimes, just "ok" is the best we can do. Sometimes, like with cancer, there really is nothing we can do, yet.

But, no you cannot put chemicals in your body and expect not to have side effects or problems. No one promises that. Probably won't happen in our lifetime.

Unfortunately, the system is screwed up. Everyone hates the pharm companies and I think there are lots of slimy elements to them. However, they are motivated by $$. They dump billions of dollars into R&D of new drugs. They all want to be the one to develop the "miracle drug" for this or that. The way the system is set up, we need them to keep doing it if things are going to get better. Sad, but they are where new and better treatments come from, along with the less than perfect, dangerous ones. What to do? Every individual has the choice to refuse medicines. But, if you take them, you are not exempt from the bad parts of them either. Neither was I. That's just the sucky reality.

It really sucks when the problems (doctors, pharm co's, insurance co's) are so tied in with the solutions. The system is screwed up so badly and I don't know how to fix it. I don't know if there is a fix since it's all so tied together. It's really sad and frustrating. There are many reasons I am moving away from clinical practice. I can't even imagine how my friends in primary care feel.


Jillian Barclay profile image

Jillian Barclay 5 years ago from California, USA

Hi, Doc! Another great article! Informative and real! Have always called prednisone the 'devil drug', but that is because its need is critical; you are right, it is often a life or death choice. With asthma or COPD, you literally make the choice- if you want to live, you take prednisone. The side effects go right along with the choice and you accept them.

I have no experience with ulcerative colitis, but am happy that you are now prednisone free.

Every drug has side effects. Medicine is not a clear cut science. If we had the answers to every health issue, it would be wonderful, but that is not reality. For myself(COPD) and my son (a chronic asthmatic for 30 years), prednisone has been a lifesaver when it has been needed.

As for natural remedies, sometimes they can be helpful, but they also have inherent risks.

The real key is finding a doctor you trust, and yes, even like, and knowing and accepting that they are not infallible and don't know everything. No one does...

Please continue to write these articles. As I have said before, we need someone like you to inform us. Thank you again!


TahoeDoc profile image

TahoeDoc 5 years ago from Lake Tahoe, California Author

Jillian - "The real key is finding a doctor you trust, and yes, even like, and knowing and accepting that they are not infallible and don't know everything. No one does..."

I like this. I hold myself and other doctors to a very high standard. But, that standard is not perfection. Some fall short of even doing their best, and that makes us all look bad. The rest (and majority, in my opinion) of us really try hard, to the point of sheer exhaustion and overwhelming stress to help in the best way we know how. But our choices are not perfect, and neither are we.

You are always so kind in your comments, thank you for that.


Lady Guinevere profile image

Lady Guinevere 5 years ago from West Virginia

I have had UC for over 30 years and got it shortley before my 1st child was born. That was kind of a drastic move to have your colon removed. It has many other functions then you can begin to know. It is your diet and stres that causes the outburst. Since I know what caused mine to imflame and changed what things I ate it has been in remission for the last 15 years. Yes 15 YEARS. There is also something else that you could try and that is the off brand of Prilosec. Yes there are dangers with taking that drug as well, but since i have been taking it for GERD I have not had any problems with my UC. When it would flare up I would just eat crackers and ginger ale.

There is something else that causes UC and that it a gluten intolerance. Get yourself off of sugar, Dairy and Gluten. Know your own body and don't let the Doctor's tell you what is wrong with it. It's yours, not theirs to take care of.

I have also been on prednisone too for short periods of time for other ailments. Since I have listened to my Soul--a Journey that I have taken to learn what my body is telling me my body has changed--fr the better and I have not been to a doctor in at least 5 years.

Best of luck with your UC.


TahoeDoc profile image

TahoeDoc 5 years ago from Lake Tahoe, California Author

Thank you Lady. I tried all of that and more...diets, herbs, aloe, probiotics, kefir, off-label meds. I had severe pan-colitis and nothing else worked. I was at risk for having my colon perforate and was anemic. Since I had surgery, no more disease.

I am now cured of my UC. I take NO medicines for UC (I only take thyroid medicine that I was taking before all of this and calcium/vitamin D for the bones).

Not everyone can benefit from the same treatments and I was thrilled that surgery was an option for me. Best thing I ever did! Glad you found what worked for you, but it won't work for everyone, (just like not everyone should have surgery), whether they listen to their body or not. Although,my body told me to get the diseased colon out, and it was right :)

And gluten sensitivity can be a trigger for many GI issues, but was not for me. Mainly, it is the cause of celiac disease (gluten-sensitive enteropathy). It can be an issue for irritable bowel which is NOT the same as inflammatory bowel disease.


Don Simkovich profile image

Don Simkovich 5 years ago from Pasadena, CA

Terrific Hub. I've rated up and will bookmark for my wife to read. She's a nurse practitioner.


TahoeDoc profile image

TahoeDoc 5 years ago from Lake Tahoe, California Author

Thank you for the compliment Don. If I had to do it over, I might choose nurse practitioner.


Lady Guinevere profile image

Lady Guinevere 5 years ago from West Virginia

Well I am glad that you got somethig out of all this and are sharing it. I know aobut Celiac and I did some research on it. Milk is also a culprit for alot of diseases and I did a hub on that too and one for baby formula that some doctors are telling htat do not include any milk products but do.


teamrn profile image

teamrn 5 years ago from Chicago

Tahoe,

There's on 'online' ON support group to which I belong, as ON really does mess up your life. You'd be amazed at the number of docs with little to no working knowledge of ON. or how to treat it; Is it THAT rare?

Since as a result of ON, this triathlete wasn't able to compete any longer and exercise really went the way of the model Developed PAH, from lack of exercise? But it's there, though mild. I don't like my future and I owe so much to lack of exercise due to lupus, prednisone. But you can't see ON, so in the eyes of the world, you're normal AND lazy.

Hope you continue to keep a lid on UC without ON. But, when you have to have steroids, you have to have them. Do you thing the drug companies are looking into an alternative to steroids?


teamrn profile image

teamrn 5 years ago from Chicago

Don, I'm a nurse, and would wish I'd chosen the NP route, to!


1person profile image

1person 5 years ago from NC, USA

I had LOTS of steroids in the past due to severe asthma and allergies.

It's a long story, but I've been mainly steroid-free for 10 years. Yay!

I had to have hip replacement surgery at 49 years old. The docs think probably due to all the steroids. I am now 51 and finally healthy enough to take up a life long dream of backpacking.

I do have residual effects from the steroids with my endocrine system. But all in all, I do pretty well.

Thanks for the article!

~carol welch


MikeC 5 years ago

Thanks to all who have contributed to my stockpile of information concerning this drug. I am a psychologist and try to look at the psychological as well as physiciological side of drug interactions and efficacy. In my own case, I have inoperative trigeminal neuralgia. The pain is unbelievable and there is no cure or operation to help me. My doctor gave me this steroid two weeks ago and my pain subsided to a wonderfully, nearly pain free level...until I stopped taking it 6 days later. I asked her to go with me one more time to see what would happen and she did. The same results...no pain until the day I stopped taking it. After reading this new information, I am hesitant to ask her to go one more time. The pain is getting bad again today but I think I'll shy away from another dose at this time. Perhaps I will wait until it is unbearable again and see if the doc will go another round.


Rhiannon_C_Knight 5 years ago from Southern Colorado

Thanks so much for sharing your story and creating this hub. I am currently on a 4 week regimen of Prednisone to help a pinched nerve. I honestly can not wait to be off of it, as the side effects have been more than a little scary. I am hoping that I won't suffer any long term side effects later on down the line.


TMinor 4 years ago

I was on prednisone for Thrombocytopenia at age12 for almost 2 years. I am now 26 and have been experiencing quite a bit of joint pain for a couple years now...as well as what feels like nerve pain down one side of my face and a number of other symptoms that come and go. Depression and anxiety have plagued me off and on for as long as i can remember(since use of prednisone). I guess I'm really wondering if prolonged use of prednisone can lead to the development of other diseases this long after stopping

use. My boyfriend of 8 years has accused me of being a

hypochondriac(?) many times due to the amount of odd symptoms I experience, but my body and mind (psych) feel how they feel and there's nothing I can do to change it. I've just learned to keep my problems to myself until things affect my daily functions. If "it always seems like there's something wrong with you(me)", imagine what its like for me. Is there any research that shows a link between the two?


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

I'm sorry for what you are going through. It stinks to feel like something isn't right and not be able to figure out what is going on- and not be able to get the support you need for that.

I think it's really hard to know what might be long-term outcomes of prednisone use and what is a new issue and unrelated. What we experience as patients isn't always documented as a known problem with a particular medicine. That's not to say it doesn't happen, just sometimes we don't know and can't really answer the question. Prednisone definitely changes your body, there is no doubt about that. Unfortunately, we may never know what all the long-term consequences are of prednisone.

I can tell you that if you were on prednisone for 2 years at a young age, you should at least probably have a bone scan, especially if you have joint pain. More importantly, you need to be plugged in with a general medical doctor (at least) or be able to discuss and sort these issues with a health professional.

A good place to start would be to discuss the depression and anxiety with a doctor and get some treatment for that. I say that because when our minds are working inefficiently, it is much more difficult to perceive correctly -- and deal with -- anything else, even physical issues.

Good luck. I wish I could be more help, but you need some one-on-one attention from a doctor to help figure out what is going on. I hope you can find that and that you feel better. I feel for you and what you are going through. :(


TMinor 4 years ago

Thank you, I agree. Maybe one day it won't be so difficult to find a doc that listens without sarcasm when one doesn't have insurance, but I know they are out there. : )


Barbara Kay profile image

Barbara Kay 4 years ago from USA

I have Crohns and was on prednisone for a couple of years. It affected me so much emotionally that my husband said I had to get off of it. I have osteoporosis too and I'm sure the predisone didn't help.


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

Yep, Barbara Kay- That stuff is nasty in so, so many ways. The gift that keeps on giving for sure. Of course it also saves lives. I couldn't wait to be off of it, though.


Jp 4 years ago

I share the same feeling you explain above. Thank you for posting.


Rob 4 years ago

I have been on prednisone for 31yrs due to a rare form of Addison's disease.I was born without the addrenal glands and know all to well what the long term effects are I struggle with them on a daily basis.I have a tendency to go both ways on the topic,in one hand I would not be alive without the medicine. And on the other I now suffer from a skeletal necrosis,hypothyroidism,am 220lbs have severe deppression and many other issues to many to list I am in pain from the moment I wake up till I. Go to bed if I can sleep that is anyway to get to the point I think it is a very good thing that you are doing not enough people know how dangerous the drug is long term yet useful at the same time thank you and if u have any Q's for me feel free to email me at robertloublanchard66819792@gmail.com


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

Rob- thank you for your comments. I know how you feel and at the same time, I can't begin to know. I was lucky that my journey with prednisone was not lifelong (although some of the effects will be). I've been off for a couple years and feel very fortunate for that. It is definitely a med to be taken only if and when absolutely needed. Of course, NOT taking it in cases like yours and mine would result in death.

I hope you find some comfort. Best wishes to you.


Jennie 4 years ago

Thanks so much for this. I'm on prednisone long term, and have been really fighting to lose weight. I'm doing at least 7 hours of exercise a week and eating 1500 calories a day, but getting no where. Went to see my doc (who I get on well with) who said it's a straight forward formula - burn more calories than you eat. Might be simple in theory, but it doesn't seem to work, whoever determined I am - I think he thinks I'm cheating. So this gave me some encouragement. I will keep going. I'm gradually reducing the steroids, so hopefully in time...


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

It's very difficult to understand if you haven't been there. It doesn't make sense, but I get what it's like. Really. Even now, Iook back and ask myself if I honestly was eating and exercising what I said. I think I was pretty honest. The direct metabolic effects of prednisone, combined with the poor sleep really make it hard.

I was depressed about the fact that I was only exercising so I wouldn't gain more weight than necessary. It was estimated that for the amount of prednisone that I took, I should have gained at least 50-60 pounds. I gained over 20. That was supposed to feel like victory, but it didn't. I still gained 20 pounds. Less than half was 'water-weight' that came off a bit more quickly when I stopped. I was still 14 pounds overweight. Sigh.

So, I do understand. I'm a doctor and the doctor part of my brain still can't accept it. The "I lived it" part of my brain totally 'buys' it. So, I believe you.

But, DO keep going!! Exercise, eat the calories you need in GOOD, healthy food when possible, and keep going. Things will be much worse for you if you don't!

Take care, good luck and thanks for reading!


Ronnie 4 years ago

Hi thanks for your article. I took prednisone form the age of 16 - 21 as i have Lupus I am now 31 and have been symptom free from lupus since 2. So i was very grateful for the prednisone at the time but since taking it I have had constant fatigue and am wondering if the long term use of the prednisone may have caused this. Prior to taking it I was quite energetic.


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

Hi Ronnie. Theoretically, once your own adrenal glands start working again, you should be back to 'normal' functioning.

I also, don't feel as energetic or 'normal' since being off of the steroid, but I wonder if it has more to do with our bodies not quite having normal immune systems. If they were normal, we wouldn't have had autoimmune diseases to start with. We will never know. If you really think the prednisone caused long-term problems, there are tests you can do to have your adrenal function checked. I would do it, but I strongly suspect it would come back normal.

Thanks for reading and taking the time to comment. Take care and hope you get your energy back. :)


Laura 4 years ago

I have been on pred for several months. I was on it for 2 yrs as a child. This time I'm constantly in pain. My blood pressure is thru the roof, I feel sick and weak and it's made me gain so much weight. I have an auto-immune disorder called ITP. I want to get better but am I ever really going to feel better? It's good to know I'm not alone. Thank you and may God bless you all.


Sandra 4 years ago

My doctor strongly suggested I go on prednisone for UC as well, but after seeing how another family member fared on the drug (she took it for lupus) I decided that the disease was better than the treatment. She experienced all the same side effects you described and seemed to age 20 years in the course of only a few years. Even when I took asacol and lialda for my UC I was having some joint pain and trouble sleeping, and those are minor artillery compared to pred.

The last time I had a flare-up, I just stopped eating for two days to give my colon a break and that seemed to make it pass more quickly along with just cutting back on eating overall. I know that's unscientific and might be bad for me in other ways, but none of the NSAIDs I ever took were 100% effective. They sure were expensive though, whereas not eating is free. Sometimes you just have to pick your poison. I'm glad to hear your colon removal was a success and effectively treated your UC.


nancynurse profile image

nancynurse 4 years ago from Southeast USA

Thank you so much for sharing. I am an RN that was diagnosed with systemic lupus when my children were very young. I too fought the weight gain but with the lupus fatigue I still gained 40 lb.. I managed to lose most of it about 5 years later. Your article really speaks to me.


Amy Sandstrum profile image

Amy Sandstrum 4 years ago

I get every now and then an allergic reaction to something triggered by environmental factors that the doctors cant figure out. I was given prednisone to treat the reactions. Luckily the allergic reactions only happen maybe 7 times a year and go away after takine one dosage of prednisone. My question is if there are long term side effects associated with taking predisone only now and then during long period of time like a year. I also get the short time effects like hyperactivity and sometimes euphoria. but since im an RN i see these effects as positive, esp. in the morning when my attacks usually occur lol


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

Short courses of lower doses are not supposed to have long-term side effects. It is less clear if there is a cumulative effect if multiple courses are taken over a shorter time. It doesn't seem likely with the doses/regimens used for allergies. And, almost certainly not if you mean one pill or one day's worth of prednisone rather than the weeklong usual course.

There may be changes in the release of hormones from the adrenal gland that are measurable in clinical studies, but they don't seem to have clinical implications.

But, yes, you WILL have the short-term side effects. I would never want to be back on prednisone for any length of time, but you are right- I miss the energy and the (perceived) lack of need for sleep. I could work out 2X per day, work like a maniac, and have energy left over. Not a healthy energy, though :)

Thanks for stopping by! (Disclaimer- There is controversy about the effects of prednisone in the short term. This info presented here is my perception/opinion of commonly held perceptions at this time. It is also based on my personal (anecdotal, not scientifically studied) use of the drug. No medical advice is implied here.)


RAtrucker 4 years ago

I was given iv dexamethasone during abdominal surgery, but wasn't told ahead of time. I have rheumatoid arthritis and was on prednisone for almost two years, most of that time I was trying to taper off. I had a really good response to anti TNFs but I had cortisol insufficiency when I tried to taper (cortisol test came back at 0.3). Each time I'd reduce my dose, even by just 1mg I would have leg aches for a week or two, finally I made it down to 2mg, and with my rheumatologists permission, I went to 1mg for a few days then zero. I had leg aches for about two weeks but they finally cleared. That was in the beginning of 2012. I had the surgery in July of 2012 and starting about four days later I had terrible cramps and aches in my legs again. When I looked at my records I saw that I'd been given the dexamethasone and I'm sure that this was the cause. I may have to have surgery again but I'm worried that the anesthesiologist won't believe that the steroid was the culprit- don't know what to do- but I don't want them to give me steroids without my knowledge again.


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

First, you have my sympathy on the RA and the steroid taper. This is tough stuff to deal with.

About the dexamethasone- remember you can flat out refuse it if you wish. (That wish will probably only not be honored if your life is in danger or there was difficulty managing your blood pressure.) Here are a couple things to consider before you do that.

First, sometimes when you have been on long-term steroids, especially with proven adrenal insufficiency (low cortisol), your body will NEED "stress-dose" steroids to be able to get through the surgery. As anesthesiologists, we see this as lowered blood pressure and difficulty managing the anesthetic. This would be the number one reason I would give steroids to someone who has a long history. There is a great deal of debate about how long after being off this is still necessary. I will tell you that when I had surgery, I asked them to please give me the dexamethasone. I would rather deal with side-effects knowing they would be short-term after one dose than worry about the anesthesiologist struggling with my blood pressure.

**This does not mean the same would be true for you or that you should make the same decision, however. It's just my personal take.**

Second, depending on the type of surgery, the dexamethasone may be given at the surgeon's request. This is usually only for head and neck surgeries, so it may be a good idea to make sure this isn't where the request comes from.

Third, and lastly, dexamethasone is given to help prevent nausea. It is quite effective for this purpose. So, if you are particularly prone to nausea OR if the surgery is high-risk for nausea or the type of surgery where vomiting would be detrimental (head and neck or abdominal), this might be another discussion you could have preop with the anesthesiologist. Weigh the risks and benefits and figure out if this is worth it to you, or if this is the only reason it is being used. If it is, ask about other options.

I hope that helps. Remember, you get to have a say and usually make the final decision about this type of thing. Whether the anesthesiologist believes the decadron caused the cramps isn't even THAT relevant. But, I would suggest a discussion about the why and the risks/benefits before flat-out refusal of the medication. Does that make sense?


RAtrucker 4 years ago

Thank you so much for your comment- it helps a lot! I think a week of leg aches/cramps does not outweigh the benefits of not having nausea or low blood pressure. This makes total sense, to the point where my fear of having it again has done a 180 degree turn- it's probably best that I do have it. So glad I found your Hub, I live in Reno so your information hits close to home.


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

Glad that helped. I would say your best bet is still to talk to them. Sounds like you don't want it if you don't need it, but wouldn't want them to hesitate if they think it is necessary.

That would be a statement that I would agree to - as the doctor OR the patient. Just my opinion, of course. Good luck to you in everything :)


Joanne Jacobs 4 years ago

Firstly, I have Crohn's Disease in remission for 33 years. when I was out of remission with Crohn's, I was so ill for 4 months, my skin in my face was translucent and every stimulation of the nerves, even just riding in an extra comfortable car on a newly madadamed street, gave me intense pain. It was probably because of the car's gliding from one side of the road to the other but I felt every slight movement and it made me worse. I vomited all the way to my doctor's office while my mother drove the new car. That day I was admitted to the hospital, was put on IV drip of Solumedrol, then Predisone 60mg. Long story short, I was on steroids for 1 1/2 years, including the eventual taper to zero steroids. I had that time of not being sick (vomiting non stop, not being able to eat or drink anything) and gaining a terrific sense of well being. Unfortunately, my symptoms of Crohn's Disease all returned and eventually I needed 2 1/2 feet of ileum removed. I was then in remission immediately as surgery will do. Would I go on steroids again for another attack? You bet. It was either that or the grave. Nothing else helped me. Azulfidine didn't help me although I was taking it 4x/day the entire 3 yrs. I was out of remission. It was the mid point of that Crohn's episode that I was put on the steroids and I gained 63 pounds. Once off of steroids, I had absolutely no symptoms or side effects. I dropped the 63 pounds of weight that I had gained and I was skeletal once again. 5' 10" and 98 pounds! After surgery, I gained 10 pounds, but was very emaciated although in remission for which I was grateful. I had my mother take photos of me (frontal and side views) with the mg. of Prednisone I took under each picture. This was done on a monthly basis as my drug was cut back. It was the worst time of my life, being so ill, and the best time, being on the steroids. I would say one must have a university physician as their doctor because they see (for example) 100,000 cases where a community doctor may see 100. Lots of heads are together at a teaching hospital which is what a patient wants. And, usually they are the "cream of the crop" of doctors.

I just had to state my background here. I hope my comments may have been of some help to those who are suffering or may have many questions about steroids & if they should be on them or not. And remember to always get a few doctor's opinions regarding your particular health situation. Predisone is nothing to sneeze over. It's a mighty powerful drug and used in the right hands, it's effects are magnificent, with the patient being put in remission or at least getting a break from their particular disease. It's the shot in the arm a patient needs when they are ready to jump into the grave.


smoore1 profile image

smoore1 4 years ago from Texas

Good hub but not much of a solution. I cured my son of autism and myself of low thyroid and arthritis that would have resulted in a hip replacement if I hadn't changed tracks.

We did the basic GAPS treatment - yeast cleansing, leaky gut healing and change of diet, then we balanced minerals, mainly iodine therapy to detox heavy metals and fill up my thyroid. General Reiki for overall health (free on youtube) is also great, plus I use other vibrational meds for minor things.

Steroids is one of the worst meds for causing intestinal yeast overgrowth - which is very serious and doesn't clear up on its own like Dr's are told in med school. There are plenty of natural ways to reduce inflammation without side affects and just as affective. As you are a doctor, I'm sure you were married to pharmaceuticals and wouldn't have considered naturals.

All symptoms and all diseases are caused by protein deficiency and/or inflammation and they all start in the digestive tract. --AMA. (Yeast overgrowth is main cause.) Also, all symptoms and diseases can be traced to a mineral deficiency. -- Dr. Linus Pauling, winner Nobel Prize.

This is what REAL medicine is all about, refills is what ROCKEFELLER medicine is all about. If it were up to my son's neurologist, he would still have autism (and tourettes and anxiety), so I will always use alternatives. (Especially for cancer since chemo has a $26,000 mark-up that no other cancer treatment can compete with.) Now I need my $700 monthly for mandatory HMO back, please.


RAtrucker 4 years ago

smoore1- I don't think this hub was meant as a "solution". I'm so glad your son is doing well. Everyone has to make their own choices when it comes to the treatment of illness and disease and then live with those choices. This hub doesn't seem like an appropriate place to push treatments- natural or otherwise- on people; nor is it a place to insult doctors by making generalized statements.


TahoeDoc profile image

TahoeDoc 4 years ago from Lake Tahoe, California Author

@smoore1- I agree, I don't think pushing your agenda here is appropriate and if you post like this again, I will not approve it.

AS for this sentence, it is personally and professionally insulting. Believe me, I tried many different avenues before subjecting myself to dangerous treatments that resulted in having my large intestine removed from my body.

"As you are a doctor, I'm sure you were married to pharmaceuticals and wouldn't have considered naturals."

How dare you insult my integrity about being "married to pharmaceuticals" without any evidence for it.

I'm glad that whatever you did worked for you. It would not have worked for me and steroids saved my life, although at a big price. That's what my hub is about. They are not touted as a cure-all without side effects.

…and I'm not sure where you went to med school (and am certain you did not), but this statement:

"Steroids is one of the worst meds for causing intestinal yeast overgrowth - which is very serious and doesn't clear up on its own like Dr's are told in med school."

is grammatically and factually incorrect. I never heard any such thing and if you are going to make claims about what doctors are taught, please back it up with fact or cease making such irresponsible claims. Thank you.


ttstevens 4 years ago

By any chance can you point me to a researcher/doctor/resource that dealBy any chance can you point me to a researcher/doctor/resource that deals with long-term side effects of prednisone after stopping the drug. My husband was on 80mg of prednisone for 9 months to treat sarcoid. He has never been the same since. He now has major tics and anxiety that seem to be psychological and some how physical as well, though multiple doctors can't figure him out. His personality is nothing like what it was before he took this drug. Any help would be greatly appreciated as we are at our wits end. s with long-term side effects of prednisone after stopping the drug. My husband was on 80mg of prednisone for 9 months to treat sarcoid. He has never been the same since. He now has major tics and anxiety that seem to be psychological and some how physical as well, though multiple doctors can't figure him out. His personality is nothing like what it was before he took this drug. Any help would be greatly appreciated as we are at our wits end.


purrrfectdesigns 3 years ago

Tahoedoc and everyone else, just wanted you to know how much I appreciate your posts. I have RA and have been on prednisone for the better part of 10 years. Am tired today, will post more another time.


epbooks profile image

epbooks 3 years ago from Las Vegas, NV

I'm familiar with prednisone as ten years ago I was diagnosed with sarcoidosis and the doctor prescribed a month of prednisone to test and see if it helps, as that is one of the only drugs that supposedly helps. Well, I took it and hated it. After one month, I weaned off of it and didn't go back on. I hope I don't have to. The days where sarcoid is bad, I just "deal" with it and try to relax. I remember reading that large list of side effects and it terrified me. It does treat a lot of ailments, but it's too bad that there are so many side effects.


oldiesmusic profile image

oldiesmusic 3 years ago from United States

I had severe skin asthma once (obvious red spots on my body and uncontrollable) and my doctor advised me to take Pred (as I called it). Well it was only for five days and the Pred was really effective. I didn't know tho that it was also a steroid. Reading the side effects really horrified me, I'm glad the treatment on me wasn't prolonged.


rakhi 3 years ago

my mother was on prednisone for 20 years doctor withdraw it suddenly after she started vomiting due to depression she died. do the doctor not know that we cant stop them suddenly. my mother demanded the tablet but doctors said we should not give her otherwise she will vomit blood. why did the doctors do this are they not responsible for my mothers death


TahoeDoc profile image

TahoeDoc 3 years ago from Lake Tahoe, California Author

Hi There. First, I'm very sorry for the loss of your mother. Prednisone should not be stopped suddenly and if it must be stopped after a long period, patient must be monitored for signs of adrenal failure.

If your mother was vomiting blood, that would be an emergency as well that can lead to death. Whether the sudden stopping of prednisone or another problem (related or unrelated problem) caused her death is impossible to say without knowing her whole history.

I hope the doctors can answer your question as to why they stopped it suddenly, whether the substituted another medicine intravenously if she was hospitalized and what actually was the cause of death.

Again, my sympathies and I hope you get your answers.


Lillie 3 years ago

I'm worried that the low dose of prednisone 40mg for five day has permanently cause my htn. I am not overweight, no weight gain (hopefully it will help me drop ten pounds) my bp normally ran l-90/60 and r-100/70. Now l-135/100 and r-138/104. It has been six weeks since completion of dose and I have to wait 12/26 to see my doctor? What is going on?


TahoeDoc profile image

TahoeDoc 3 years ago from Lake Tahoe, California Author

Prednisone does cause water retention and blood pressure increases could be related to that, BUT if you are 6 weeks out from taking it, there shouldn't still be an effect from that dose at that duration unless there is something else going on.

Have you told your doctor's office about the blood pressure - the diastolic (bottom) number in the 100's should be brought to their attention. If they can't see you, an urgent care may be a good idea. If you have a headache, blurry vision, facial numbness or any other odd symptoms, go to the ER immediately.

Hope you get an answer soon.


Andrew 2 years ago

I was prescribed prednisolone for severe eczema which was causing constant recurring infections I had 1 week course 40mg daily and it completely cleared my skin and for that one week I had my life back.

Unfortunately not long after stopping the drug my eczema returned and infections as usual.

Iv read the potential dangers of long term use, but prednisolone dragged me out of hell and I want this drug prescribed longer then 1 week.

My docter/dermatologist refuse to give me this. can I insist? I mean this is my body and I want my life back.


valeriecg 2 years ago

Thank you TahoeDoc for posting your experience and sharing your knowledge on prednisone. As an individual with 7 years of prednisone history, of which the last 3 1/2 yrs. are continuous usage to control Vertigo, I found your comments helpful, rational, and a sane voice in this discussion about a drug that obviously evokes strong opinions. I am aware of the serious side effects of long term usage, many I have experienced, but find little in the literature that specifically addresses how to combat or minimize the damage. While I have had discussions with my physicians (several specialists) about side effects and damage control these are never as thorough as I would like given the limited time in an office visit. Our focus is my vertigo management from prednisone to Cellcept (hopefully the lesser of 2 evils). Can you direct me to a source that can give practical, verified strategies to minimize damage (if there is something besides the obvious eating healthy, exercise, adequate rest and avoiding stress). Is there anything in the literature that discusses the time it takes for the various body systems to repair itself or even addresses temporary vs permanent damage.

Again, thank you for taking the time and effort to share valuable information.


TahoeDoc profile image

TahoeDoc 2 years ago from Lake Tahoe, California Author

Andrew, you can most certainly seek a second opinion or make another appeal for the medicine. Doctors are not obligated to prescribe in a way they feel is harmful or unethical (they may disagree with the patient on the risk/benefit ratio, in spite of your suffering. I know how frustrating that can be, but they have to act ethically, as well). I would ask what their recommendation is for an alternative. If they don't give you one, seek another opinion, but in most cases, where the alternative isn't life-threatening, doctors may not want you on an indefinite course of a medication with almost certain (not potential) very bad, long-term consequences.

Good luck and I hope you find a solution to what must be a very distressing situation.


TahoeDoc profile image

TahoeDoc 2 years ago from Lake Tahoe, California Author

valeriecg- I wish I had some information on how to reverse the damage from catabolic steroids. I know that, for me, I am using heavy resistance training (lifting heavy weights) and impact exercise (like Insanity and T25) to build my bone density back up. It is working, but has taken a couple years. I am still working to lose the weight I gained, but have other factors that contributed to that. That is why this medicine is so bad while being so good. It there is a way to stop the side effects, I have never been able to find it. Living a healthy lifestyle is very important, but will not stop the physiologic effects of the steroid.

I also don't know if there is anything published about how to reverse damage. I am doing what I find to be sensible, but I think it's different for everybody and I know there are some effects for some people that do not get 'fixed'.

Good luck in your search for an alternative. Keep being as healthy as you can be. Do try some weight lifting to keep the bones healthy. Eat a reasonable diet with a good balance of nutrients.

I will look again soon to see if I can dig up any more info as most of this is from my memory when researching for myself. I will post any new findings here.


Jim Done profile image

Jim Done 2 years ago

I've been diagnosed with psoriatic arthritis over 30 yrs ago. I've been on gold shots, indocin, just about every kind of NSAID, humera, asulphadine, methotrexate, and remicade.

But all the while, I was on a so called maintenance dose of prednisone (10mg) for over 20 yrs.

The first time I ran into problems was when I had back surgery and that night, my blood pressure plummeted, I got extremely cold, numb feet and hands and called for the nurse... She didn't know what to do and called the floor Doctor who consulted outside my room. I heard one of the Dr. say that I had to be steroid dependent because I was in prednisone for so long and if I didn't get a stress dose ASAP, I was going to go I to shock and possibly die.

Well, after that episode I asked to get off it.

Over a period of many months, I was weened down from 10 mg to 8 mg then 6 and 5 mg and then I began having problems. I couldn't remember anything. I got lost inside stores not knowing where I was or how to get out.

I would get in a car and pull to the side of the road because I couldn't remember where I was going.

I had a couple of episodes where I broke into a cold sweat, got dizzy and weak and passed out. I had no idea why all of this was happening to me but it was due to the lack of cortisole in my body. I had to go back to 7.5 to 10 mg a day.

After all this, I have discovered I have been allergic to wheat gluten and since I am off that, most of my arthritic problems have disappeared.... I haven't taken any other medication for it other than the prednisone.

I also saw a life changing movie called Fat, Sick and Nearly Dead.... And have begun juicing green vegetables, mixed with others and some fruit and this makes me feel great and stabilizes my weight....

I am asking if anyone has had the same experience with prednisone and has anyone been on it as long as I have and have they had any success getting off it.

Let me know.

Thanks

Jim


Jacob 2 years ago

Prednisone has destroyed my health. Was prescribed is for a bad dose of gout, and i had an electrical type thru my bones believing they were getting weaker and my whole body shutting down! Obv a large part of this reaction is psychotic but i haven't returned to normal (3 months ago) and my wision is blurry WORSE... This drug has ruined me


EE 2 years ago

I have been a sufferer of UC for the last 16 years, now 36. I've been on mesalazine for the last 14 years, estimate, and azathioprine for 10 years. I'm also on folic acid and B12 injections.

I've been on and off prednisone for some years too, sometimes managing a space between the two courses, other times like now going back on it immediately.

I note in your initial comment you mention taking prednisone whilst pregnant. I've been wanting to try for a baby for some time but have always been told by my specialist that I have to wait until I'm 'healthy' and off prednisone. I've never had a 9 month period without prednisone!

Any advice for a desperate 36 year old who feels the clock ticking?


Meemom65 2 years ago

Andrew

I am in your same situation - my Dermatologist won't give me Predict either - periodically I am on Pred for my Asthma (short term) and it always clears up my Skin and itching like I died and went to Heaven but like you when I go off the Pred the rash returns within a week. The itching and burning returns and I am miserable. None of my doctors will try a low mg dosage to see if that would help. I am sooo frustrated! I am 73 years old so why not risk it - how much longer do I have anyway? Good luck to you and I know how you feel.


iampamiam profile image

iampamiam 2 years ago

I got sick with Ulcerative Colitis when I was age 7, a very severe case where it flared up every time the Dr. dropped me to the 60 Milligram dose. I had 100% of my large intestines removed at age 12. Remained on Prednisone until the illeal hookup at age 13. I am 5'2" while my parents were both tall, she at 5'10" and he at 6'4". My jaw did not form properly, I have bone density and vision issues. Nasty little lifesaver.


Sherry 2 years ago

I had the worst prednisone reaction that my doctor or anyone in my life had ever heard of. I was tiny when I started on prednisone for lupus. However within 6 months I gained over 100 lbs!! Sadder still was the mental and emotional strain I went through- as a relatively new mom these actions were a surprise to everyone because it just wasn't me. After a bit longer it was obvious if I remained on this course of treatment I would kill myself. My doctor never seemed concerned with my mental state and simply wrote on my chart that I was morbidly obese but offered no other instruction or insight. He told us it was this or die. Ultimately my husband and I decided we'd rather chance death then to continue on this way. I cannot explain deeply enough the physical and mental trauma I was going through. Thankfully I was taken off the steroids- a bit quicker than is recommended, before I killed myself or anyone around me. I mean that seriously. Of course adding to the horror was that the steroid treatment was not the only option and did NOTHING but cause me more physical problems including liver failure. The weight was not easy coming off and I still have cushings 17 years later. More importantly it caused a permanent change in my personality. I was finally diagnosed with steroid psychosis years later. But that did nothing to erase the horrors my family and I suffered through those terribly hellish days. Thankfully I have few specific memories of those days but sadly my loved ones certainly do. I would gladly take those memories on myself to free my family from them. I now have it in my living will that any use of steroids can not be used on me, period. I would rather die from lupus if that's what it comes down to then to have my family suffer again. All the advice I have is to think carefully about side effects vs illness, don't assume this is the only treatment available-research and get second opinions, speak out loudly to a doctor who is not taking the side effects seriously. Most importantly seek help from professional therapist/ psychologist and psychiatrist, as soon as you think your mental side effects are more than what most consider the norm. Blessings and thoughts to everyone here who has traveled this road, to those who follow behind and to the loved ones who don't stop loving us while this is happening.


Arunava 2 years ago

Hi All,

I am immensly happy to see such a forum where many people are sharing their stories regading Prednisone treatment. Here is my own story:

I have been diagnosed with Wagner's disease on August2013 this year and since then I am on Prednisone dosage.

I had a sever condition where my lung stopped breathing and I was in ECHMO. They administered Cyclophospamide along with prednisone initially.

This worked but I had a relapse when they tried to taper off Prednosone too early.

Then I was given Rituximab and this really worked well on me. Along with this I was given strong dosage of Prednisone (75mg/day) for about 1 month,

and from then onwards they started taper down the Prednisone.

Now I am on 20 mg Prednisone and by GOD's grace till now I do not have any side effects except little weight gain.When I started I was 63 Kg (This was due to my bad condition earlier) and now I am 78Kg. I am 5feet 7 inches tall and my doctor says my BMI is fine.

Before this , I only read about the bad side effects of Prednisone everywhere. But I did what I could do.

1- I started doing Pranayama (A breathing exercise in YOGA) regularly twice a day. I knew and belived of it's power to balance everything in your body.

2- I started eating lot of green vegetables to keep my stomach healthy.

3- Recently I did a bone density test which was perfectly ok.

My doctor is very happy about my progress and optimistic that I would be off to Preds very soon.

I would like to know TahoeDoc's opinoin of practising YOGA to overcome the evil side effects of Preds.


TahoeDoc profile image

TahoeDoc 2 years ago from Lake Tahoe, California Author

I think yoga has many positive benefits for the body in health and disease. I have no doubt it can help fight some of prednisones bad effects. It won't fight some of the chemical changes, but definitely can be of physical and emotional benefit.


Jo Anne turner 2 years ago

I have wegners granulomotosis and have been on prednisone for 8 years I gained 30 pounds which I can not lose and have has 2 back fractures but if I want to live I will be on it and methrotrexate the rest of my life. It is a miracle drug with horrible long lasting results. My doc does not want to rock the boat as he says so I won't relapse. I am afraid to come off of it to so I just suffer the consequences.


Andrea 2 years ago

I've taken Prednisone off and on for my asthma with only very minor side effects, namely the excess energy to run around and clean the house. Last month however, I spent about 6 hours in a patch of Poison Ivy and found that it didn't agree with me. My arms were cut up from the briars that I was removing and then I was trying to cut up these hairy vines from my fence which were then getting all over my arms. 24 hours later my arms started to blister and the rash spread on to my trunk from hips to shoulders. The itching was bad but the pain was incredible. My skin felt like it was on fire and I my skin looked like it was cooked. My dermatologist prescribed a heavy dose of prednisone over three weeks and a steroid shot and steroid creams. The first two days of being on the huge dose of prednisone made me a little muddle headed and I couldn't get to sleep although the itching and burning from the Poison Ivy had a lot to do with that too. All in all the side effects that I experienced from all those steroids wasn't that bad. I did retain water until I got near the end of my prednisone pills, then I couldn't find enough bathrooms! Though my skin was not completely healed up the parts that were healed were incredibly soft, not what I was expecting at all. The rest of the side effects were non-existent. It's amazing to me how medications can behave so differently from person to person. I wouldn't hesitate to take prednisone again if I was stupid enough to get near Poison Ivy again,


TahoeDoc profile image

TahoeDoc 2 years ago from Lake Tahoe, California Author

Short-term or temporary use is much safer and less likely to produce long-term sequelae. I was on high doses for the better part of 3 years and and serious issues. I have taken very short courses since for asthma flares and had no bad side-effects from it.


Jen 2 years ago

I have developed what my radiologist says is an allergy to contrast dye.

I have to have MRI every 6 months and now am told I need to premedicate with prednisone prior to the scan. I am pretty scared. It seems a very big dose 50 mg 14 hours before,50 mg 7 hours before and 50 mg 1 hour before. Will having to do this cause long term damage. I am worried about my bones and mental well being. They tell me if I don't take it no MRI.


Kk mom 2 years ago

I got so much info thank you


sandrina 2 years ago

I have suffered severe effects like the ones described on this forum except I took Licorice Root not Predmisone I took 500mg a day off and on, mostly on for over two years. I had no clue I was taking an herb that was dangerous. I was taking it for PCOS, as recommended on Life Extension.org. I thought I was doing something healthy. So everyday I took this herb with my vitamins. Over time, I was having horrible symptoms but I never attributed it to this herb. Now three years later, I suffer from horrible bone loss in my hips, spine, legs, and jaw. I have aged and thin skin all over my body. my hair has thinned, and the list goes on. I went from being fit and in good health, attractive and young looking for my age (50) to suddenly old and unhealthy. I'm completely devastated. It took me over a year of going to doctors before I figured out the culprit. The doctors I saw said everything will reverse back to normal. Nothing has reversed. I have to live with all the damage, and worse, I caused it. I made a horrible mistake that has ruined my health and life and cannot be undone. I will never be the same, and I will never forgive myself. When I look into the mirror, I do not know the person looking back. That is the worst feeling. I appreciate any comments and or advice. Thank you for listening.

Sandrina


ksiciliano 23 months ago

I have been on a low dose of steroids for one year treating hives

i was taking about 3mg to 11 mg per day. Some days you can get by with a lower dose but then flareups make increase the pred.

I am so far in perfect health, bones, b/p, and my weight.

i think what has helped is staying on a low carb diet and i walk 2 hours everyday. I am hoping to get off this medicine at some point if and when the hives stop. Now the side effect are terrible. I am an artist and somedays m6 hands shake so bad I can not do my art work. And almost everything upsets a person on these drugs. And difficult sleep also. And you are hungry all the time. But i just give my body lettuce, celery, etc. It wants pie and high carb food but you can not give into this craving.

I have been told hives can last 16 years But hope this is not my case. I am being treated at Barnes Hospital with a new drug to stop hives. It is calked xoiler, i hope i have spell this correctly. This medicine is given by injection only. The cost is $4000.00 a shot. I hope this info is of some help to others. Also take really good calcium from a health food store that is balance in vit. D and mag. in your calcium. Do not take junk calcium from the

stores. Get the good stuff from health food stores. You need D, and magnesium for calcium to work in the body and a balance of each. Good luck to all.


KIM JOHNSON 23 months ago

Need your help. There is a petition right now to make RA a dissability w social security dissability. Needs a ton of signatures. Before feb 1st. If I don't figure how to post w my phone tonight will do on computer tomorrow.



mary 22 months ago

taking prednisone for 7 days for a flare up of my asthma the side effects go away after getting the medication out of my symptom--presently the dr, prescribed 5mg daily for ever as I am 92--now I am a complete mess, cant sleep up at 5 am, pains in my stomach, itch over my body, memory loss, my eyes aren't right--I believe that it is such a strong drug and my body cant tolerate a build up that never leaves my body--it has to be a powerful drug to make it in 1 mg--I want to stop this drug


E.M. 21 months ago

I have had lupus for all my life...30+ years. And have been on pred for the last 3 years. Anywhere from 5mg a day to 60mg a day...also i have fibro, and sjogrens...so with all of these things wrong its hard for me to say its side affects from pred or the diaseas...


cynthia 13 months ago

i want to say thank you to doctor Tosin who has been my helper I've had psoriasis for good 9 years and feel kinda ashamed of myself in public but thanks to the spell cast doctor that has helped cure the herpes cos i have spent so much going to different medical center for treatment and it all result to same situation i am writing this cos i am trying to help others know some one like that Dr Tosin exist you can contact via email if u fall into any diseases or sickness tosinbalogunspiritualtemple@gmail.com or call +2347052024680


linda 6 months ago

(MUST READ: HOW I GOT CURED FROM COPD)

I am Lydia, I was diagnosed of Chronic obstructive pulmonary disease (COPD) in 2014, the doctor told me it has no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath especially when i walk or talk for long, this continued till a friend told me about how her mother got cured of COPD through herbs she bought from a South African herbal doctor Dr Ejiro, I contacted this herbal doctor via his email and he sent me the herbal medicine through courier service, when i received the herbal medicine i used it for 3 weeks as prescribed and was totally cured of COPD. Contact this herbal doctor via his email ejiroherbalcure@gmail.com or call +27617403481


karen 5 months ago

hello.......

My names are Karen Cole am from UK, I was diagnosed of Emphysema , I was told by my doctor that there's no cure. I was so worried anytime i think about it ..i was just researching online I saw a lot of testimonials about DR Mapipa on how he uses herbal medicine to cure so many deadly disease .... I contacted him via his email;drmapipaherbalmedicinehome(at)gmail(dot)com and told him my problems, then he said i will be totally cured within 18days,my heart was full on joy when he said that i will be totally cured within 18days ,i just had faith and believe,then i purchased the herbal medicine and sent him my details such as NAME,HOME ADDRESS,PHONE NUMBER ,Then DR Mapipa sent me the herbal medicine to me through courier service and I used the herbal medicine for good 18 days, then I went for check-up and my doctor confirmed thats am totally free from emphysema..it work like a miracle to me ,please viewers out there this is real am so happy to share this testimony .thanks to DR MAPIPA GOD WILL BLESS U . if u want ti know more about doctor mapipa and his great work check his website drmapipaherbal weebly com

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