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i have come off steroids after 11 years, am finding it very difficult
Polymyalgia Rheumatica (PMR) | Last Active: May 27, 2023 | Replies (17)Comment receiving replies
It might be a good time to suggest to your doctor that having your cortisol level checked would be a good idea. A low cortisol level can cause you to have low energy along with aches and pains.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
There isn't much they can do for secondary adrenal insufficiency caused by long term prednisone use. Your adrenal function should improve with time. Sometimes adrenal function doesn't improve and for this reason your adrenal function needs to be checked and monitored.
A referral to an endocrinologist might be needed. If you need corticosteroid replacement treatment, hydrocortisone is preferred instead of prednisone.
I got off prednisone after 12 years of treatment for PMR. I never would have been able to taper off prednisone except that a biologic called Actema allowed me to stay on a low dose of prednisone for 6 months. Actemra kept my PMR symptoms in check a Actema doesn't suppress your adrenal function like prednisone does.. My adrenal function improved after 6 months and an endocrinologist told me when it was safe to stop prednisone.
My symptoms of adrenal insufficiency didn't improve for more than a year. It was very difficult but my symptoms did slowly get better.
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thankyou for your reply . Are you better now back to normal? I spent years going from 8mg of Prednisone per day and down to 3mg then up again then down..I then had an eye scare and they put me on 60mg for a month which didnt help and my eye slowly got better..After that enormous raise of steroids i decided that had to be it and i tapered off down to 2mg taking 12 days. Then I had a double fracture in my foot which took 6 months to heal (probably caused by the steroids). So in February having reduced to nil i came off the steroids. All of this since September. I had not heard of Actema ..so shall see if I can get some help.