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Profile picture for linda7 @linda7

Are you seeing an endocrinologist? They are the ones to manage adrenal insufficiency. I just went to one even though I doubted that he could help since I can't get below around 5 mg prednisone without PMR pain plus lots of other symptoms. Both my rheumatologist and the endocrinologist said that nausea is a major symptom of adrenal insufficiency and I haven't had that at my lowest dose. The endocrinologist said he could help me if I got down to 4 mg of prednisone without PMR pain. He would put me on hydrocortisone which has a shorter half-life than prednisone and needs to be taken twice a day. If I understood him correctly, he would test my cortisol level and also have me try cutting back or eliminating one of the 2 daily hydrocortisone doses to attempt to stimulate the adrenal glands to produce cortisol. He told me that in my present condition, without any major side effects from prednisone, staying on 5 to 6 mg prednisone indefinitely is what I may need to do. I think you need professional advice tailored to your situation.

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Replies to "Are you seeing an endocrinologist? They are the ones to manage adrenal insufficiency. I just went..."

@linda7
"He told me that in my present condition, without any major side effects from prednisone, staying on 5 to 6 mg prednisone indefinitely is what I may need to do. I think you need professional advice tailored to your situation."
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I absolutely agree with needing professional advice when trying to discontinue prednisone after long term use.

However, in my way of thinking, needing to stay on 5 to 6 mg prednisone indefinitely for prednisone induced adrenal indefinitely is a major side effect of Prednisone.

Now it is being learned there is no safe low dose of prednisone. It hasn't been learned for PMR/GCA yet but for other autoimmune disorders like Sjögren’s and rheumatoid arthritis --- there wasn't a completely safe lower dose of Prednisone---maybe just less severe side effects on a low dose.
https://sjogrens.org/blog/2020/what-are-the-side-effects-of-low-dose-prednisone
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I was only able to discontinue Prednisone after 12 years of treating PMR when a biologic was tried. The biologic didn't suppress my adrenal function while it controlled PMR. It still took me nearly a year on low dose Prednisone for my cortisol level to improve. It took another year or two for my symptoms of adrenal insufficiency to improve. The overwhelming fatigue on low doses of Prednisone and after I discontinued prednisone was overwhelming indeed.

There wasn't that much my endocrinologist said she could do if I still needed more than 3 mg of Prednisone to control PMR. There wasn't that much she could do for adrenal insufficiency after I got down to 3 mg.