In retrospect, I should have tried harder to taper off Prednisone sooner. I tried to taper off Prednisone quickly initially after PMR was diagnosed. I was accustomed to going from 60 mg to zero in a month or two for flares of reactive arthritis and uveitis. I knew it was possible to taper off relatively quickly. I also knew when I was in remission for the above disorders. It was hard to know when PMR was in remission.
I recall when my rheumatologist told me PMR was going to be a long term proposition. She said I would not be able to taper off as quickly as I was accustomed to. I don't know why PMR was different . My rheumatologist said I would be on Prednisone for at least a year and maybe two years. I don't think my rheumatologist thought it would be 12 years until I would be off Prednisone again.
When I was told the symptoms of adrenal insufficiency can mimic the conditions that prednisone was treating it all started to make sense to me. The person who had the adrenal crisis said it would be difficult to separate out what symptoms were adrenal insufficiency and what symptoms were caused by the autoimmune conditions we have. She was being treated for Mixed Connective Tissue Disease (MCTD). Those "overlap features" of various autoimmune conditions complicate everything.
https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147
-----------------------
I had overlapping symptoms of several conditions. My belief is that we all have a combination adrenal insufficiency to some degree the longer we are on Prednisone in addition to our autoimmune conditions.
I'm amazed I was able to taper off Prednisone after being on Prednisone continuously for 12 years. I wonder how much my intermittent use of Prednisone during the 20 years before PMR was diagnosed compromised my adrenal function.
I go back and forth about whether or not Actemra helps the adrenals to recover. I have decided Actemra indirectly helps the adrenals because ...
#1 Actemra allowed me to lower my Prednisone dose to 3 mg or less
and
#2 Actemra doesn't suppress my adrenal function like Prednisone did.
Actemra worked well for the PMR part of my problem. Being able to stay on 3 mg of Prednisone or less for an extended period of time seemed to allow my cortisol level to improve.
You are a medical marvel. You also had the perseverance to stay with it. You are in a category by yourself. I hope you continue to enlighten the rest of us. Cheers.