1. < Polymyalgia Rheumatica (PMR)

PMR relapse symptoms

Posted by abbeyc @abbeyc, 6 days ago

For anyone who had PMR and tapered off steroids. Did your PMR come back? How quickly? And did it feel the same as the first time?

I’ve been off steroids for 1 month and feel a lot of stiffness which has grown increasingly each day. Mostly in hips, thighs, shoulders and hands as stiffness. This is not the same as my original full blown PMR. The stiffness is different every day and the worst only of it lasts a short while until I have moved around. But now the stiffness is lasting more throughout the day as a more mild annoying stiffness making it difficult to get around.

Wondering if others post PMR have similar issues and considering this to be a PMR flare.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Mike | @dadcue | 1 day ago
In reply to @usmwp111 "I did the fairly traditional PMR taper off Prednisone from 15mg in Dec 2023 until stopping..." + (show)
@usmwp111

I did the fairly traditional PMR taper off Prednisone from 15mg in Dec 2023 until stopping in February 2025 (so 14 months from age 70 thru 71). I really wanted off Prednisone. For the next three months, thru April 2025, it was a tough battle against pain in my major joints and fatigue, but I did notice 'baby step' improvements, which I used to push through the discomfort. In April, I started to begin to notice more and more improvements (putting on socks/pants or reaching to a high shelf with minimal pain). Although not completely out of the woods yet, I'm back to 95% of where I was pre-PMR. As mentioned, many times in these posts, this is a personal journey for each of us. I'm not a medical professional, but my belief is that over these past 5 months I have not been battling PMR, but rather battling the impact that Prednisone had on my body, specifically my joints. I understand that Prednisone reduces inflammation, thus eliminating the pain. However, I think it may also cause you to stop using the muscles (and bursae) you normally use, and your body starts to use 'work arounds' to avoid the pain and inflammation. Once I stopped using Prednisone, I needed to painfully retrain my body to be able to do things the way I did before PMR (and Prednisone) which seems to be working. Just my thoughts and experience which I wanted to share with the group.

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Your points are well taken. I think you are right. As for muscles being affected by Prednisone just Google prednisone induced myopathy or corticosteroid induced myopathy.
https://www.ncbi.nlm.nih.gov/books/NBK557731/
--------------------------
Heck ... just Google "Prednisone induced ... " and leave the rest blank and it will give you a general idea about various things that Prednisone can cause. The sad part is most of those Prednisone induced conditions have been known for decades.

The lady in the following case report gets it too.
https://www.statnews.com/2023/10/16/long-term-prednisone-steroids-ibd-side-effects-chronic-illness-alternatives/
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I think we all do battle with PMR in the beginning. Prednisone certainly relieves the pain and is a good "short term" fix for PMR. Unfortunately, Prednisone is never a good "long-term" solution for any problem. Prednisone is a good short term gift that keeps on giving in the longer term but not in a good way.

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reets70 | @reets70 | 1 day ago
In reply to @usmwp111 "I did the fairly traditional PMR taper off Prednisone from 15mg in Dec 2023 until stopping..." + (show)
@usmwp111

I did the fairly traditional PMR taper off Prednisone from 15mg in Dec 2023 until stopping in February 2025 (so 14 months from age 70 thru 71). I really wanted off Prednisone. For the next three months, thru April 2025, it was a tough battle against pain in my major joints and fatigue, but I did notice 'baby step' improvements, which I used to push through the discomfort. In April, I started to begin to notice more and more improvements (putting on socks/pants or reaching to a high shelf with minimal pain). Although not completely out of the woods yet, I'm back to 95% of where I was pre-PMR. As mentioned, many times in these posts, this is a personal journey for each of us. I'm not a medical professional, but my belief is that over these past 5 months I have not been battling PMR, but rather battling the impact that Prednisone had on my body, specifically my joints. I understand that Prednisone reduces inflammation, thus eliminating the pain. However, I think it may also cause you to stop using the muscles (and bursae) you normally use, and your body starts to use 'work arounds' to avoid the pain and inflammation. Once I stopped using Prednisone, I needed to painfully retrain my body to be able to do things the way I did before PMR (and Prednisone) which seems to be working. Just my thoughts and experience which I wanted to share with the group.

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Has anyone had PMR pain in ankles? My left ankle swells each night and becomes extremely painful, and it’s not something I ever had before. I was on prednisone for six months in 2023 when PMR first hit me. I relapsed in 2024 and 2025, and was back on prednisone in January. I really believe that prednisone is the reason for my many ailments, ankle pain, GERD, arrhythmia and insomnia, along with many other minor things.

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trishwrite1 | @trishwrite1 | 1 day ago

I developed osteoarthritis in my hips and knees while on Prednisone. I needed pain shots then. My X-rays still show it but I have minimal pain since off pred.

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abbeyc | @abbeyc | 1 day ago

How long have you been off Pred?

What upsets me is that doctors don’t coach about difference between PMR pain vs other pain. Instead they just keep saying go up in dose if you feel pain. I believe I could have been off prednisone years earlier assuming pains I felt were not PMR.

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1 reply
Mike | @dadcue | 1 day ago
In reply to @abbeyc "How long have you been off Pred? What upsets me is that doctors don’t coach about..." + (show)
@abbeyc

How long have you been off Pred?

What upsets me is that doctors don’t coach about difference between PMR pain vs other pain. Instead they just keep saying go up in dose if you feel pain. I believe I could have been off prednisone years earlier assuming pains I felt were not PMR.

Jump to this post

When I was first diagnosed with PMR. A primary care doctor told me later that at first he thought I was a crazy person that wanted Prednisone.

My very first rheumatologist said my condition wasn't treated with Prednisone except she misdiagnosed me. A second rheumatologist overruled the first rheumatolgist and diagnosed PMR.

I told the second rheumatologist that the pain was nothing like what the first rheumatologist thought I had. I couldn't explain how the pain was different but it was different. I don't know how the second rheumatologist concluded I had PMR but she told me I was going to need Prednisone for a long time.

Over the course of 12 years the focus changed to how to get me off Prednisone. I had to learn how to describe various types of pain and couldn't just say "everything hurts." I didn't understand WHY it hurt everywhere until after I got completely off Prednisone. I still don't know why it hurt at the beginning of PMR.

If I had known why it hurt everywhere when I tried to taper off Prednisone maybe I could have tapered off sooner. I still have PMR but my rheumatologist doesn't want to treat it with Prednisone anymore,

As convoluted as it was ... it made PMR interesting. I think doctors have a hard time explaining PMR too,

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elizabethannr | @elizabethannr | 1 day ago
In reply to @abbeyc "I’m glad there are others who also believe their post PMR pains are from steroid damage...." + (show)
@abbeyc

I’m glad there are others who also believe their post PMR pains are from steroid damage. What a tragedy though. I like your theory about unused muscles and joints so maybe there is hope things can improve

I can share now that I have gone to acupuncture 3 times now to get help with these new pains. After this past Friday’s treatment I can safely say it is helping (the cupping especially) and is no coincidence.

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I have been getting acupuncture myself and my acupuncturist also recommended a pill called STOP which she said helps reduce the inflammation. Main ingredients are L-glutamine, MSM, Quercetin and Curcumin along with some other natural ingredients.

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1 reply
abbeyc | @abbeyc | 23 hours ago
In reply to @elizabethannr "I have been getting acupuncture myself and my acupuncturist also recommended a pill called STOP which..." + (show)
@elizabethannr

I have been getting acupuncture myself and my acupuncturist also recommended a pill called STOP which she said helps reduce the inflammation. Main ingredients are L-glutamine, MSM, Quercetin and Curcumin along with some other natural ingredients.

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Yes I’ve been taking supplements since the onset and my acupuncturist also recently recommended Curcumin. Even though I’m now off steroids I’m afraid to stop taking the supplements.

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1 reply
elizabethannr | @elizabethannr | 21 hours ago
In reply to @abbeyc "Yes I’ve been taking supplements since the onset and my acupuncturist also recently recommended Curcumin. Even..." + (show)
@abbeyc

Yes I’ve been taking supplements since the onset and my acupuncturist also recently recommended Curcumin. Even though I’m now off steroids I’m afraid to stop taking the supplements.

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Well, they aren't going to hurt you so best to do what you think will help!

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