Advice/experience about going back on Prednisone

@bitsygirl, The prednisone is the magic pill that makes PMR symptoms go away or at least make it where we don't feel the pain as much. My second round with PMR has been in remission for the past six years and I'm always thinking it may be coming back with every little shoulder pain or aches that come on for whatever reason. Sometimes it's too much exercise and sometimes it's just old age for me. From what you have described, I don't think you have been on prednisone for too long. My first time with PMR it took me 3 and half years to taper off of prednisone. The second time after a six year remission it took me a year and a half to taper off. From what I've read the average time for PMR to go into remission after starting treatment with steroids is 18 to 24 months but everyone is different. I'm not a doctor but from my experience, especially my first time with PMR, it is not going to go away without treatment. I was started on 20 mg prednisone for both occurrences of PMR. I think the avg starting dosage is 15 to 25 mg but I think it may depend on the person and the symptoms.

If you aren't already keeping a daily log with your level of pain when you wake up, that might be something you can do to track your symptoms and discuss with your rheumatologist. There are some other discussions you may find helpful. Here's a link from a search of Connect to discussions and comments - https://connect.mayoclinic.org/search/?search=pmr+managing+symptoms.

PMR can last as long as 4-5 years and as little as 1-2 years before it decides to go into remission. Individual experiences in the amount of time/years it takes for PMR to go into remission varies greatly with PMR.

I'm on prednisone going on year 2 and my PMR is still very active.

Thanks for your replies @johnbishop and @sloped483. I guess I am leaning toward taking the full prednisone course. My thinking is that I'd really like to be rid of it once and for all, or at least for awhile. I also can't think of a reason why taking the predisone and then going off of it would make the PMR worse than it is now.

I was so miserable when it was at its worst and I am so happy that I can live my life now, I am a little scared "to touch anything". 🙂 I also already have some of the problems that are side effects - like cataracts, high BP, atherosclerosis and I don't want to make those thing worse. Sounds like 10mg is an acceptable dose for people with those concerns.

Unfortunately, there isn't a cure for PMR.

PMR is an autoimmune inflammatory muscle disease and its symptoms are only controlled with prednisone and perhaps with newly approved Kevzara for PMR. PMR is self-limiting and will eventually over time burn itself out, but when that occurs, no one can predict.

Cumulative stress to the body (whether physical, emotional, or psychological), age 50 and older, and persons of Northern European and/or Scandinavian decent seem to be PMR's defining factors.

Everyone has their own trigger as to what precipitated their PMR.

For me, I believe my PMR was triggered from having 8 vaccines (2 shingles, 2 flu, 4 Covid) in a span of just 2 years when my body finally gave out 2 years ago at the age of 58.

A low dose of prednisone seems to help many people since they seem to stay on it for a long time. A short duration at a low dose may be okay but ask your doctor. What someone considers to be a "low dose" and a "short duration" is debatable.

I was surprised when my rheumatologist said "if I only needed 3 mg or less" he wouldn't be so concerned. I was taking much higher doses for decades so that caused a lot of concern. The least amount of prednisone I could ever stay on was 10 mg but 15 mg was better. The pain and overwhelming fatigue was tolerable only if I stayed on 10 mg or more.

I am very happy and glad when my rheumatologist thought after 12 years it was time to try a biologic called Actemra (tocilizumab). There were hundreds of my failed attempts to taper off prednisone during all those years. I don't think I was tapering too fast or too soon or otherwise incorrectly. I was just "dependent" on that amount of prednisone but it wasn't an addiction.

To be able to get off prednisone, I needed to stay on 3 mg of prednisone for quite a while. Staying on 3 mg was only possible with the addition of Actemra which kept PMR in remission.

It took approximately 6 months until my cortisol level improved. One of the known side effects of prednisone is that it suppresses adrenal function so that cortisol isn't produced. That seems to happen at prednisone dose greater than 5-7 mg. Countless people seem to have difficulty getting lower than this dose and get stuck with taking this dose for a long time and sometimes forever.

Prednisone won't get rid of PMR but it makes it easier to live with PMR. Actemra seems to cause PMR to go into remission and doesn't suppress adrenal function.

Getting off prednisone will probably get rid of adrenal insufficiency if you haven't taken prednisone at too high of a dose and for too long. "Too high" and "too long" is debatable too.

@dadcue Thanks for your reply. I was not aware that prednisone suppresses adrenal function. I have been reading more about side effects. It's a long boring story, but I tested at prediabetic on an oral glucose tolerance test a few months ago. Lining up that OGTT with the timing of the previous interval of prednisone at 10mg, I am suspicious, given all the information on steroid-induced diabetes, that it is was due to the prednisone. My blood sugar is much closer to normal now. So I have flip-flopped and decided the long course of prednisone is not worth the risk. Your point about adrenal function convinces me even more that its the right decision for me. I will wait until the pain becomes debilitating again before I take the risk. I'd love to be pain free, but I can completely live with the level of pain I have now. I am just counting my lucky stars that I feel like I have a choice.

Now I feel bad because I wouldn't want you to wait until the pain becomes debilitating again. It is mostly a personal decision. Having a good relationship with your doctor is important too. Sometimes another set of eyes are needed to properly assess the problem.

My situation was unique to me just as your situation is unique to you. I don't want to convince anyone what they should do and shouldn't do.

I wouldn't recommend taking prednisone for "niggles of pain." I didn't even know what niggles were until I found something on the internet that explained niggles.

Living with "too much" pain is never a good idea. I know what was too much for me but that's the extent of my understanding of PMR. All the rest is just my personal experience with being diagnosed with PMR.

Don’t feel bad! I probably over stated how long I’d wait and the pain right now is no where near debilitating! I made the decision based on the potential side effects aside from adrenal suppression. I really appreciate your input! I waited too long to take it when the PMR first appeared and I lost a ton of fitness. I don’t want that to happen again. So it just has to be worth the risk and I don’t think it is right now.

Sounds like you understand the risks and the benefits of prednisone. I used to tell my rheumatologist how prednisone "protected me." She would acknowledge what I said but added that prednisone was also putting me at risk. I claimed to understand but I'm not sure I did at the time. I trust that you will make the right choice for you

When I got off prednisone, years later, it was a bigger miracle than when I first took prednisone. Since getting off and staying off prednisone, I now have a tendency to err on the side of caution with regards to taking prednisone. It was hard to make good decisions when I was having intolerable pain. Just because the pain goes away, that doesn't mean the problem goes away.

PMR makes it difficult to figure out what the problem is. My rheumatologist would also ask me if I was sure it was PMR before I increased my dose. I would say "yes" but in retrospect, I honestly had no idea.

I am newly diagnosed and am on 20 mg of prednisone, which has been very effective. I also have osteopenia, and am very worried about it worsening. Has anybody tried methotrexate or other alternatives to steroids? My PMR symptoms weren’t that awful but my ESR was 77 at diagnosis. Thanks for any advice.