@csimmonds

My rheumatologist didn't want to refer me to an endocrinologist when I still needed 10 mg of prednisone for PMR. However, I got a referral and I visited with an endocrinologist who said there was nothing she could do. We had a pleasant conversation about my 12 years of being on prednisone. At the end of my visit the endocrinologist said I should come back to see her if I ever got down to 3 mg. The endocrinologist referred me back to my rheumatologist to see if there was anything else my rheumatologist could do to get me on a lower dose of prednisone.

A couple of years later I started Actemra. I was able to taper down to 3 mg of prednisone. It didn't seem like I needed prednisone anymore because I didn't have a flare of PMR. I was "symptomatic" but it didn't seem like PMR was the problem.

I told my primary care doctor about how awful I felt and we discussed my symptoms. I reminded my primary care doctor that the endocrinologist wanted to see me again if I ever got down to 3 mg of prednisone. I don't know exactly why my primary care doctor ordered a morning cortisol level but the result of my cortisol level created a lot of action. I was told that I shouldn't taper my prednisone dose any lower than 3 mg until I could be seen by the endocrinologist again.

My second visit with the endocrinologist was about 2 years after my first visit. My morning cortisol level was rechecked along with an ACTH level because both were needed to confirm prednisone induced adrenal insufficiency. I remember that my ACTH level was normal but my cortisol level was still low.

According to artificial intelligence:
"A normal ACTH level alongside low morning cortisol (often < 10 µg/dL or
< 300 nmol/L) can indicate that the hypothalamus-pituitary axis is trying, but failing, to stimulate the adrenal glands, a common finding during recovery from steroid-induced adrenal insufficiency. This suggests the pituitary is functioning, but the adrenals remain suppressed by previous high-dose prednisone, meaning the body is still recovering from chronic suppression."
---------------------
There still wasn't much the endocrinologist could do except to tell me to stay on 3 mg and wait until my cortisol level improved. I remember the endocrinologist telling me that a low cortisol level was better than none. She was optimistic that my cortisol level would improve with time. About 6 months later my cortisol level improved and we discussed stopping prednisone but that would be the beginning of another long story.

I routinely see an endocrinologist 5 years after discontinuing Prednisone for metabolic abnormalities from long term prednisone use. My cortisol level is normal again but my endocrinologist says some of my metabolic abnormalities might be irreversible.