PMR relapse symptoms

I have some discomfort every day -- early morning and after being stationary -- and I have been off prednisone for over 2 years.

That’s exactly what I’m feeling also. Never had this before prednisone. But now it’s 3.5 years later and I’m 63 so could be being older. But I believe prednisone accelerated bone issues. Whenever I was in higher doses of prednisone I could hear my bones rubbing together making noises. Not when in low dose. Only high dose. So I think it was harmful in that way.

I'm hearing that rubbing noise in my shoulder joints. Other joints now make popping noises at first when exercising. Just dropping to 3.5 but noticed noises this last month. I was hoping it would go away when off prednisone. Thanks for sharing.

Interesting you hear it also. Yes it goes away. Like I said mine stopped when I was below 4mg and now off prednisone. I wonder what it is. I’m convinced prednisone causes it.

I am 68 and my understanding is that the low-level discomfort is a result of the PMR itself. It is incurable. I think this is what we will experience from now on.

Wow! You heard this? What is it exactly and why?

I also tapered off prednisone with only small flares. No prednisone after January. About 3 months later I started experiencing stiffness in my hip girdle and neck, but nowhere else. During PMR I was also hobbled from my neck to my knees and my hands. This does feel different and moving around loosens me up, which was not true with PMR. It also responds somewhat to ibuprofen, which PMR definitely did not. I have found that taking an Advil at night before I retire helps with the morning stiffness. I may try one after lunch as well. I wish the prednisone side effects would have subsided instead of the muscle stiffness!

I’m going to try Advil. Motrin not really helping much. Let’s hope it doesn’t get worse for either of us.

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.

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.