"Would you mind sharing what medication you took to take off the Prednisone? Do you still take it? Is your PMR gone? Your experience sounds complicated and enormously challenging. How is your quality of life now? If these are too personal to answer I understand."

These questions aren't too personal but answering these questions becomes a long story when I retrospectively recall everything that happened. Without all the details I will say tapering off prednisone wasn't going well when Actemra (tocilizumab) was suggested as a possibility if I was willing to try it. I didn't have any hope that I would ever be able to taper off prednisone. Fortunately, someone who had an adrenal crisis was encouraging me to try to preserve whatever adrenal function I had left.

Actemra (tocilizumab) was FDA approved for GCA in 2017. My rheumatologist believed that Actemra "should work" for PMR too but didn't make any promises. My rheumatologist said Actemra might be my best chance of ever getting off prednisone.

I don't know exactly what happened but within a couple of months I was able to taper from a prednisone dose of 10 mg to 3 mg. I was afraid to taper any lower because of what I thought I knew about cortisol levels and the potential for an adrenal crisis. My rheumatologist and an endocrinologist agreed and said I should stay on 3 mg while my cortisol level was monitored.

About 6 months later, the endocrinologist said it "might be safe" to stop prednisone from her standpoint because my cortisol level was better. I wasn't having any PMR symptoms but my rheumatologist said a relapse was a possibility. When I stopped Prednisone, I had a relapse but it wasn't PMR. It wasn't GCA either but an ophthalmologist put me back on 60 mg of prednisone and stopped Actemra. That was when things really got complicated because the ophthalmologist said a different biologic called Humira was "optimal" for my eye condition.

After 6 months on Humira and still being on 15 mg of Prednisone it was clear I would not be able to taper off prednisone again. The pain was consistent with PMR although I can't say that for sure. I also have an autoimmune inflammatory arthritis and Humira should have worked for that condition.

Eventually, my rheumatologist said I could choose either Actemra or Humira. I choose Actemra. My rheumatologist increased the frequency of my Actemra injections and said to try to taper off prednisone again. Within a couple of months I was off Prednisone for the second time. No relapse of anything since then and that was 2 years ago.

The longer I stay off Prednisone the better I feel. I have stopped nearly all my other medications most notably 3 BP medicationss and 1 medication for high cholesterol levels. My intraocular pressures have improved. I had premature cataract surgery many years ago.

I still take Actemra but now I do a monthly infusion rather than the injections.

If you are interested, a biologic call Kevzara was FDA approved for PMR last year. Kevzara and Actemra aren't the same but they share the same classification. Both medications are IL-6 inhibitors.
https://www.ajmc.com/view/sarilumab-indication-expanded-to-include-polymyalgia-rheumatica
I don't want to promote either of these medications because they are risky too. However, my rheumatologist thinks it is better for me to be on Actemra instead of Prednisone for the rest of my life. I don't seem to have any side effects from Actemra.

All I know is that Actemra doesn't suppress my adrenal function like Prednisone did. My quality of life has improved immensely.

My rheumatologist doesn't think PMR will ever be gone. He says when autoimmune disorders last so long, the immune system develops a memory for the tissues it has been attacking.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/#:~:text=T%20lymphocytes%20in%20autoimmune%20diseases&text=An%20important%20characteristic%20of%20the,immune%20system%20learn%20with%20experience.
I don't know if this is true. I hope to stop Actemra at some point to see if PMR is gone. I suppose if my immune system has a memory then it can also forget about things.