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Smallest amount of prednisone for adrenal glands to work again?
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (14)Comment receiving replies
@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.
Replies to "@linda7 "He told me that in my present condition, without any major side effects from prednisone,..."
@dadcue Thank you for sharing your experience. Everybody is different, for the rate of metabolize the prednisone varies. Mine is slow one. Just 10 mg in the morning could cause me sleepless during night. After initial tree days of dosing at 10 mg/day, I had to drop it to 5mg/day. That was the dose I took for the next three months. Of cause it was not very comfortable, there were some bearable pain and stiffness, especially in the morning. It was still better than sleepless night. After that, it took 15 months to completely off prednisone. Thinking back, I realized my Adrenal system was compromised, but never stop working. That made the journey back to prednisone-free life easier.
PS. I was medicinal chemist before retirement, I have habit of doing literature search before starting any medication. Eg. prescription was 15 mg/day. After search/calculation, I knew the correct dose was 9.8 mg/day for my body weight. Also, I asked to check my cortisone level before I took off prednisone. My PMR was more and less related to the Covid vaccine boost shots. I stopped taking vaccine shots during recovery. That was my personal decision. Everyone should consider their own priority.
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@dadcue Two professionals do not think I have adrenal insufficiency judging by my symptoms when I taper very slowly as low as I can and stay there for 10 days. There is no way I can function below 5 mg prednisone. I have tried Methotrexate, Kevzara and Actemra. There could be something else going on but I have done research and don't have any ideas and neither do my doctors. Sometimes there is not an easy answer and you just have to do the best you can with your situation. You had good results with Actemra and lots of side effects with prednisone, which is very different from my case. I don't believe that everyone who can't get off prednisone has adrenal insufficiency. My father had GCA and PMR, was on prednisone at a low dose for 10-15 years, finally got off in his early 90's and lived another 10 years without any major health problems. I hesitate to comment on this site because you have such strong opinions about prednisone and adrenal insufficiency which I do not think apply to everyone. I may not comment any more.