@petermccarville

I was referred to an endocrinologist when a low cortisol level was "discovered." I had to be able to taper down to 3 mg of prednisone to get a cortisol level checked. The endocrinologist "expected a low cortisol level" and was more surprised that I had a cortisol level. Any cortisol level was a reason to be "encouraged."

I took prednisone for 12 years to treat PMR. It was "impossible" for me to taper my prednisone dose lower than 10 mg and that dose was my "comfortable prednisone dose." When I tapered to 7 mg the "inevitable relapse" happened.

Prior to starting Actemra (tocilizumab), I had to taper my prednisone dose as low as possible "just to see" what happened. I went from 10 mg to 7 mg and relapsed and went back to 10 mg. Interestingly, my pain when I relapsed wasn't exactly like PMR pain although I can't describe how it was different.

Actemra allowed me to reach 3 mg with relative ease and that was when my cortisol level was checked. When my cortisol level was low, I was advised that I should NOT taper any lower than 3 mg. I was surprised because nobody ever told me NOT to taper. Until this time, my instructions were that I should always to taper slowly. I was now being advised to stay on 3 mg for as long as it took for my cortisol level to improve and to refrain from increasing my dose unless it was absolutely necessary. The endocrinolgist told me to expect some discomfort. Fortunately, Actemra kept PMR in check so I didn't have a PMR relapse while I stayed on 3 mg of prednisone.

It took time but my cortisol level improved. The endocrinologist said "a single adequate cortisol level" didn't mean my overall adrenal function had improved. The only way for my overall adrenal fuction to improve was to discontinue prednisone and to see what happened. The endocrinologist wouldn't predict what would happen when I discontinued prednisone. The only reassurance she would provide was that I could restart prednisone "for any reason if I felt the need."

I would say it was at least a year after prednisone was stopped for my adrenal function to recover. It was a very eventful year after I discontinued prednisone. There was a need to restart 60 mg of prednisone again at one stage but it had nothing to do with an adreanal crisis or a PMR relapse. My cortiosl level was "rechecked" once during the year but my endocrinolgist said "it wouldn't be meaningful" to do routine cortisol checks. Routine cortisol tests are often not very helpful because the numbers change all day long and do not always show how your adrenal glands handle stress.

I have now been off prednisone for 5 years. I have to assume my cortisol level is normal. However, my endocrinologist is concerned that my hormone profile is abnormal. I have been diagnosed with a primary small bowel neuroendocrine tumor (SBNET) with metastasis. The SBNET has been slowly growing for a long time.
https://www.mayoclinic.org/diseases-conditions/neuroendocrine-tumors/symptoms-causes/syc-20354132