PMR - Decreased prednisone and pain returned

I was never sold the idea that I would be "pain free." I was told the pain would be managed with prednisone and the pain would be more tolerable. Yes ... the pain was more tolerable when I took enough prednisone but never was I pain free during the more 12 years I took predisone.

I was able to taper off prednisone. My steroid withdrawal symptoms were rather painful. I had to keep reminding myself that PMR was in remission. After being off Prednisone for almost 3 years ... I still have some pain but the symptoms aren't anything like the onset of PMR.

My rheumatologist told me the opposite. She said if I’m still experiencing pain, PMR is still present. I don’t know who to believe anymore.
I have tapered down on Prednisone to 3.5 mg. I found that tapering by 1/4 mg at a time and staying on it for two weeks works best for me. I do have some minimal pain, mostly in my arms. But it has not increased.
I plan on having my adrenal glands tested when I get down to 3 mg. This has been a two-year journey for me.

@ekgilpin1 The blood tests will confirm it for you.

You mean the inflammation markers should be in normal range?

Does anyone know or think Prednisone can cause (permanent?) muscle damage?

Corticosteroid induced myopathy happens but the damage usually isn't permanent.
https://pubmed.ncbi.nlm.nih.gov/32491663/
Minimizing dose and duration of treatment is the most important safeguard to prevent this.

"Glucocorticoids have a direct catabolic effect on muscle, decreasing protein synthesis and increasing the rate of protein catabolism leading to muscle atrophy."
https://www.physio-pedia.com/Myopathy_Steroid_Induced

Corticosteroid induced myopathy happens but the damage usually isn't permanent.
https://pubmed.ncbi.nlm.nih.gov/32491663/
Minimizing dose and duration of treatment is the most important safeguard to prevent this.

"Glucocorticoids have a direct catabolic effect on muscle, decreasing protein synthesis and increasing the rate of protein catabolism leading to muscle atrophy."
https://www.physio-pedia.com/Myopathy_Steroid_Induced

I have weaned down to 1 mg 3 times and each time I get pain in my shoulders so I would up the dose again.
I have been reading a lot of comments from others about pain in shoulders while weaning off steroids . I find this to be very mysterious.
I switched to a new Rheumatologist who believes I no longer have PMR and that I probably have not had it for the past 1-2 years and I should get off steroids. I’m down to 2.5 mg and will quickly get off even with mild shoulder pain and hope it resolves itself or I will just live with it. I would love to someday know what the shoulder and upper arm pain is from.