@pmrnew

First to say that I didn't do any of what follows without consulting with my doctors.

I did what I called a "countdown taper" by doing the following doses for one day each --- 3mg - 3mg - 2mg - 2 mg - 1 mg - 1 mg and then zero for a day --- After this, I would go back to 3 mg and repeat the pattern when I felt like it. It was an arbitary schedule that I did at one week intervals so nothing was scientific. I actually did these countdown tapers a few times before the endocrinolgist said I could discontinue prednisone. I was supposed to stay on 3 mg and not taper any lower than 3 mg because my morning cortisol level was too low.

I only did these countdown tapers when I was on Actemra. It was my attempt to see if Actemra was actually controlling PMR --- (condition #1 was met).

I discussed doing these countdown tapers with the endocrinolgist and she was interested in any symptoms that I experienced. Since I felt just as good on zero as I did on 3 mg, the endocrinologist said, "It might be safe to discontinue prednisone." That was only when my morning cortisol level was called "adequate" by the endocrinologist --- (condition #2 was met).

My endocrinologist and I had a long discussion about what "could happen" when I discontinued prednisone. We had some contingency plans in place for when I decided to stop taking prednisone altogether. The contingency plan was mostly that "I could restart prednisone for any reason if I felt the need."
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My first attempt at stopping prednisone only lasted for a week or two. I needed 60 mg of prednisone again but it wasn't because of PMR and I didn't have an adrenal crisis. It was something that was completely unexpected. I had a flare of panuveitis but for me, that was familiar territory. I just didn't ever have a flare of uveitis when I was taking prednisone every day for PMR.

Panuveitis is a severe, widespread inflammation affecting the entire middle layer of the eye (the uvea), as well as adjacent structures like the retina and optic nerve. It is a medical emergency that requires prompt evaluation by an ophthalmologist to prevent irreversible vision loss.
https://my.clevelandclinic.org/health/diseases/panuveitis
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What happened next was part of my saga of discontinuing prednisone. This part was more complicated but I was able to discontinue prednisone again 6 months later. The second time I discontinued prednisone, the remission lasted longer until there was a supply chain problem during Covid. That was when my Actemra supply disappeared and none was available.