You can private message me if you wish. Generally speaking what your endocrinologist told you is the same thing that my endocrinologist told me. There isn't a scientifically proven way to taper off Prednisone after long term use. Other than what my doctors told me and my own personal experience ... I don't know much. The experts in the field don't know either but you can't blame them if nobody knows.

My "adequate" cortisol level was relative to my need for cortisol at that moment in time. There isn't a "normal cortisol level" because cortisol levels change throughout the day. Cortisol levels follow a circadian rhythm. A person’s cortisol level is generally higher in the early morning and lower late at night.

A person's need for cortisol changes depending on the day as well. Some studies suggest that the adrenals should be capable ramping up cortisol production up to 10 times baseline levels almost instantaneously during stressful situations when compared to more relaxed situations. Therefore, stress can dramatically increase your cortisol level.

I needed to be able to hold my prednisone dose for 48 hours when my a.m. cortisol level was done. Being on prednisone interfered with my body's ability to produce cortisol. My endocrinologist evaluated my symptoms of adrenal insufficiency while I was off prednisone for 48 hours in order to determine that my cortisol level was "adequate at that moment in time."

What my endocrinologist didn't know was whether or not my adrenals were able to produce enough cortisol if my stress level increased. The stress could be emotional stress or physical stress caused by an injury or an infection. That was why she made sure that I understood that I needed to take prednisone again for any reason if I felt the need after I discontinued prednisone.

Being on a biologic that controlled my PMR symptoms made it easier for me to separate my symptoms of adrenal insufficiency from PMR. I just kept telling myself that it wasn't PMR because Actemra had it under control. Anything else was more likely adrenal insufficiency while my cortisol level was low but I was never certain it wasn't PMR.

I hope this helps.