My endocrinologist wasn't exactly an "adrenal specialist" but she had insight into the problem with adrenal insufficiency. She encouraged me to stay on a low dose of prednisone (3 mg or less) and not to increase my dose unless it was absolutely necessary. She expected that I wouldn't feel well until my cortisol level improved. Knowing what to expect made it easier for me.

As it turned out, all the tapering strategies I tried weren't that helpful because I would generally increase my dose at the first hint of any discomfort. The discomfort was similar to the pain I felt when PMR was originally diagnosed but not debilitating as long as I took 3 mg. Mostly my symptoms were extreme fatigue. All my symptoms were labile and even my BP was erratic. I think this stems from the lack of regulatory effect that cortisol has on many body functions.

I think my symptoms on low doses of prednisone were a combination of PMR and adrenals insufficiency. The biologic I was taking had the PMR part covered so I wasn't too worried about a PMR flare. Staying on low dose prednisone for an extended period of time allowed some recovery time for my adrenals. As my primary care doctor frequently said, my medical problems were "multifactorial."

The most amazing thing was not having taper after I stayed on 3 mg for 6 months. I was instructed to stay on 3 mg for as long as it took for my cortisol level to improve. Once my cortisol level was "adequate," my endocrinologist said I could simply discontinue prednisone -- no tapering required. I did a fast taper --- 3 mg to zero in a week.

My endocrinologist also said I could go back on prednisone at any time if there was a need. She didn't specify what the need would be but requested that I tell her if I ever needed prednisone again. I assume she was going to help me decide if prednisone was really needed or not.

It was surreal when I had a massive flare of uveitis shortly after discontinuing prednisone. My ophthalmologist said I needed 60 mg again. Fortunately, I only needed 60 mg of prednisone for about 4 months and I tapered off again ---so much for slow tapers. My cortisol level was still "adequate" since the 60 mg of Prednisone was only used short term for uveitis as compared to long term use for PMR. Lots of medical research says long term use isn't good.

I still take a biologic for multiple autoimmune conditions but PMR might be in remission.