I didn't understand the complexity of getting off Prednisone until someone who had an adrenal crisis enlightened me. I also took prednisone for more than 12 years to treat PMR.

It wasn't like I didn't understand how to taper off Prednisone. I took Prednisone for other autoimmune problems for more than 20 years before PMR was diagnosed. I had autoimmune uveitis which recurred every year or so. Uveitis can cause vision loss so my ophthalmologist would prescribe 60 mg of prednisone every time I had a flare of uveitis. The only difference was I could always taper off prednisone in about a month to achieve remission of uveitis. Going from 60 mg to zero in a month to treat uveitis wasn't that hard to do.

There was something about PMR that made it more difficult to taper off prednisone. My rheumatologist and I talked and we decided PMR would be a "long term" proposition. Neither of us knew how long I would be on Prednisone and I was never rushed to taper off too quickly.

In retrospect, I wish I had learned about the problem with prednisone dependency much sooner. I got off Prednisone after a biologic was tried. The biologic was used to keep PMR in check while I tapered my prednisone dose lower.

Adrenal insufficiency was "discovered" when I was able to maintain a 3 mg dose of prednisone. The biologic didn't suppress my adrenal function so my cortisol level improved after 6 months. An endocrinologist said I was lucky because sometimes an improvement in cortisol levels never happens after long term prednisone use.

After more than 12 years of trying to taper off prednisone, I was unsuccessful no matter how slowly I tapered my prednisone dose. When the biologic was initiated, I still tapered prednisone slowly at first. Then at 7 mg, I started to taper by 1 mg per week. At 3 mg an endocrinologist informed me my cortisol level was too low to taper any lower than 3 mg. Six months later, the same endocrinologist said my cortisol level had improved. Since my cortisol level was "adequate" I was told it was safe to simply stop prednisone and going from 3 mg to zero shouldn't be a problem. I was reluctant to stop prednisone so I did a fast taper from 3 mg to zero in about a week.

Now I'm off prednisone and feel infinitely better. However, I still do a monthly infusion of the biologic but it controls all my autoimmune problems much better than daily prednisone ever did.