Short version of a very long story:

I took prednisone for more than 12 years for PMR. The doses I took were much more than what is typical for PMR only and for a much longer period of time. There were other autoimmune problems so more than PMR only.

I had an online conversation with someone who had an adrenal crisis. She was very concerned about my long term use of prednisone because of steroid induced adrenal sufficiency. I wanted to taper myself off prednisone and my rheumatologist understood that I was trying. I would struggle to get less than 10 mg and interestingly 7 mg was the lowest I could get without a "pain crisis."

The pain was never exactly like my original symptoms of PMR. The pain was similar to PMR symptoms but never quite the same. I don't know why it would hurt so much when my prednisone dose got into single digits.

I was able to taper off prednisone after my rheumatologist suggested a biologic that was FDA approved for GCA. The idea was that if it works for GCA the biologic should work for PMR too. I was skeptical but I was willing to try what my rheumatologist suggested.

The biologic worked! I was able to taper by 1 mg per month for the first 3 months down to 7 mg. I felt well so I then tapered by 1 mg per week down to 3 mg.

I was told by an endocrinologist that if I was ever got down to 3 mg that I needed to have my adrenal function evaluated. My rheumatologist was surprised that I was able to taper so quickly so he told me to stop tapering until I could see an endocrinologist. My cortisol level was low. The endocrinologist said my adrenal function wasn't good but she was encouraged that I at least had some adrenal function left.

I needed to stay on 3 mg of prednisone for about 6 months before the endocrinologist said my cortisol level was "adequate." It was thought that I could discontinue prednisone with safeguards in place. She said I could probably go from 3 mg to zero all a once but I tapered off over a couple of days.

It wasn't exactly smooth sailing after I tapered off the first time. I needed to go back on prednisone but for reasons that weren't related to PMR.

The biologic kept PMR under control so eventually I manged to get off prednisone again. My last dose of prednisone was about 2 years ago. I still take the biologic to control PMR. My adrenal function improved after I got off prednisone.

Sorry ... I tried to keep this short.