Length of PMR condition

Welcome @puppytlc, I'm not sure there is a definitive answer to your question. Everyone is different. For me, my first time with PMR took 3 and half years to play out then returned 6 years later and lasted for 1 and half years. I do think moderate exercise and diet play a part in helping those of us with PMR. My second time around was much easier mostly I think due to lifestyle changes I made after learning more about my condition.

Here is some information that might be helpful if you haven't seen it already.
-- Can Diet Affect Symptoms of Polymyalgia Rheumatica?:
https://www.healthline.com/health/polymyalgia-rheumatica-diet
@dadcue and others may also have some thoughts and experience to share with you. Have you done any research on the condition?

I’m coming up on two years now. My doctor had originally said oh this will all be over in a year. As if it wasn’t a big deal. I hope I am winding down at this point with the help of Biologics, a change in eating habits and trying to get back into exercise again. It is very difficult because if I even slightly overdue the exercise I’m in pain for 2 days. There are new treatments now that weren’t even available when I started this. Kevzara for example it’s only been approved for PMR for about a year now. Try to stay as positive as you can because I find that stress and depression actually makes it worse. Pretty funky cycle if you ask me lol. Take good care and know they’re a lot of people in the boat with you.

I am a very healthy eater, never any sweet stuff or junk, also no meat or dairy. I exercise every day so hoping that this will be over next year. I will let you know when the time comes.

@puppytlc Hi, I was diagnosed at 50 and am 54. My rheumatologist said I should only have for 1 year too. The good news is that it's manageable and not life threatening. I'm at 5mg of prednisone for 2 years. Lower dose and PMR let's me know it's still around in my neck, shoulders and right outer thigh. Keep your chin up because as barracudacool said, stress and depression can make it worse. Virtual hug!

Same story here, I developed PMR in Jan 2022 and was diagnosed in July 2022. I was a very active 58 who overnight felt 80. I started pred at 20 mg and am currently at 3mg. I tried Kevsara but had terrible injection site reaction so chose to stop it down, but it did seem to be helping. I have a very high stress job and have been under general life stress as well. I manage to function but am in daily pain with the typical PMR trifecta neck,shoulders and hips. I feel like my muscle mass is wasting away but when I try to exercise I pay the price and am smacked down. Something as simple and going in the pool to lesson the effects has hurt terribly for days after. I have tried limitation diets, they don’t seem to help. I will say that for me stress seems to be a driver. I took my first real vacation this year and by the end of the week was feeling minimal pain, it was the best I have felt since this journey began. I tried to tapper upon my return and it all roared back. My rumy wants me to go on Methotrexate, I really don’t want to. It is tuff on the liver, I enjoy wine as my stress relief, so not good. It causes nausea and takes 3 mos to even see if it might work. I would welcome any insight if folks have tried. I keep hoping that PMR will leave me one day just as randomly as it arrived. Sure wish the doc who said this will be gone in a year was accurate, alas I am coming upon my 3rd anniversary. I actively research and it seems there are a LOT of us who keep PMR for a long while sadly.

PMR was treated with prednisone for 12 years and I never did achieve a lasting remission. When Actemra was tried, I achieved remission in about 2 years. According to my rheumatologist, I still might have PMR based on inflammation markers that increase when I don't receive a monthly Actemra infusion. I need long term treatment with Actemra but I have been off prednisone and relatively symptom free for the past 4 years. I do a monthly infusion of Actemra instead of a daily dose of prednisone.

There were some variables that explained why I needed prednisone for such a long time. Having multiple autoimmune conditions was one variable. My rheumatologist conceded that it would be impossible to adequately treat everything.

I think adrenal insufficiency might have prevented me from tapering off prednisone sooner than I did. That was a medical condition caused by long term prednisone use. There were other prednisone related side effects so I was also on an "arsenal of medications" to treat the other side effects. Once I got off prednisone, all the medications used to treat the side effects were no longer needed within a couple of years after I stopped taking prednisone.

Hi @dengland, Your description of your PMR journey sounds similar to mine but you were a few years younger when you started. I held a very high stress job and even though PMR has forced an earlier than anticipated retirement, my pain has not gone away. I have tried diet and exercise to no avail and I often pay for minimal jaunts in the pool with pain for several days. I have had 3 Actemra infusions and am praying that relief is coming soon. I am impressed that you have been able to taper your prednisone dose because I am still at 19 mg after 2.5 years. Down from 25 mg. My hip and thigh pain become so ridiculous and inflammatory markers go off the charts at lower numbers. Praying that your solution is coming and that mine will arrived with the next Actemra Infusion. Biggest blessings! ❤️

You do not know how great it is to read these words. And you have an outstanding doc. Not sure how he or she could tell it might only last that long but when I first realized I had it, I did see that it was self-limiting and could last as little as 1-2 yrs or longer. At any rate, hope it potent!!!!!
At 5 mg, you are hopefully not having too may steroid effects, if any.
I started this journey in Jan '24 in my thighs (inner, outer, hams, groin, even derriere!). It moved to my upper arms. Then the Baker's cysts developed. In the last 2-3 months, legs are much improved. My upper arms are better but still very limited range of motion and painful...I know my right rot cuff is torn but at last US not seriously so. My fear is that due to the inflammation, I could have worsened this condition. At any rate, I so hope it keeps improving. I'm back to working out but nowhere close to what I was into pre-PMR. Hope to get back there.
Again, thx for sharing your story and I hope mine is helpful, too. It really does help to try and be positive...sometimes tough, but I found when I was engaged in activities I enjoyed, even at its worst, I didn't even think about it.
Take care!

When my doctor told me I had PMR I asked her how long before I might expect remission. She said that in her experience it would be at least 18 months. Sure enough it was almost exactly 18 months later when I took my final dose of prednisone.

For me the steroids worked as expected lowering my inflammation markers back to normal almost immediately. But the long slow taper was agonizing at times and the post-steroid pain and fatigue continued for nearly 3 months. I realize PMR may return but for now I’m grateful that it’s in my rear view mirror.

I achieved remission as measured by SED and CRP testing in three months after initial diagnosis. At that point I had tapered from a high of 30 to 10 of prednisone.
My rheumy informed me that we were no longer treating PMR, that I could expect various non-PMR pains to occur, and that the task at hand was to slowly taper off prednisone without provoking adrenal insufficiency or crisis.
I tapered from 10 to 5 at 1 per month, then at 0.5 per month, now at 2. During this period I have occasionally experienced periods of cramps and pain in my arches, lower legs, wrists, rotator cuffs, and fingers. As my adrenals have (apparently) restarted production of cortisol, these pain episodes have stopped. Mild osteoarthritis was diagnosed during the taper in my wrists with xray.
Until your adrenals resume (hopefully) cortisol production, conditions such as osteoarthritis which had previously been kept under control by normal adrenal cortisol production can be expected to cause pain.
All pain is not PMR pain, and therefore should not be treated with prednisone.
It is complicated, and there is not one template that fits everyone. Hopefully we all have docs that are cognizant of this variety of possibilities, and are willing to consider changes based on your testing and symptoms. Again, all pain is not PMR pain.
Good luck.