Off Prednisone but Residual Stiffness

It might not get better but congratulations for getting off prednisone. My immediate thought was if Tylenol Arthritis helps tremendously, you might not be having symptoms related to PMR.

I remember when my rheumtologist requested that I come off prednisone to be diagnosed with PMR. I think it is sometimes necessary to come off prednisone to be diagnosed with something else.

I have been diagnosed with underlying medical problems since coming off prednisone. Fortunately there have been better treatment alternatives instead of Prednisone to treat the other problems.

It took me about 3 months to get past the aches and pains. Two years later I still get a pain here and there. I had one last week in my right hip that went down my leg. I could not lay on that side. Four or five days and it seems to be gone. IDK.

Tylenol Arthritis is the only thing that gets me through the day. I’m so glad that someone else has the same experience as I have had.

I stopped taking prednisone on June 1, 2024. I now have aches in my thighs and hips when I wake up that seem to decrease as the day goes on. Sometimes I will take a couple of Advil if I know it will be a particular active day. Otherwise I just try to not let these aches get me down. I know it is not a flare so for that I am happy. This site has been extraordinarily helpful in keeping up my spirits. I am hoping that my aches will lessen as my body gets back to a normal non prednisone state. What seems to cloud the issue is my age, 77. While I am in good shape and exercise daily, some aches and pains could just be part of the aging process. I will carry on with my Carpe Diem mantra. Thank you all for your support, Liz Ward

There have been other threads on here where the discussion has came up about getting back to your old active self. I am convinced that PMR has left us with a sort of adrenal fatigue. I also realize my age at 72 is not allowing me to do the same things. The medical community does not recognize a "fatigue". Although someone posted an article couple weeks ago on adrenal myalgia. Not sure what the difference in myalgia and fatigue would be but the one Dr explained it as not a fatigue but rather your body is not asking for enough cortisol.(insufficiency). I think its real. Even for me at 2 years later.

Agreed not PMR now. But I have heard from my rheumatologist that prednisone withdrawal causes problems …I am not in pain just extremely stiff, making it hard to bend and get up from sitting position. When taking prednisone, the stiffness was gone. Wondering when or if my mobility will return.

There are case reports about what you are describing.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070320/
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It wouldn't be the first time that treatment for one medical problem creates another medical problem.

There is a consensus in the medical literature that long term Prednisone use can cause secondary adrenal insufficiency and the risk of rather high. You can't blame doctors for wanting PMR patients off Prednisone as soon as possible

Conclusions
Oral glucocorticoids, when given for long periods, put patients at risk of developing secondary adrenal insufficiency due to suppression of the HPA axis. The prevalence of long-term oral glucocorticoid use is 1% in the general population and increases with age and among women. The absolute risk of having adrenal insufficiency in patients taking oral glucocorticoids is 48.7%
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10257969/
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Unfortunately this risk is rarely mentioned when Prednisone is initiated for the treatment of PMR.

I'm happy to be finally off Prednisone. PMR seems to be in the rear view mirror but plenty of other problems to overcome looking forward.

@susanew
What you describe sounds about the norm for a lot of us. Mobility may not be at 100% but it does get better the more we move around!
Good luck on your journey!

I hope you continue to feel better and that the aches and stiffness become less and less.

Many thanks.