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PMR - Decreased prednisone and pain returned
Polymyalgia Rheumatica (PMR) | Last Active: May 28 1:36pm | Replies (157)Comment receiving replies
I have to find it. I copied it from an NIH document and posted it on a facebook PMR site. I made a copy of it in my email. So it was word for word but I need to find the document search. Same happened to me on the facebook page. I am not an expert but my wife has glioblastoma. Drug of choice is dexamethasone. I have researched steroids for 3 years. Mainly because I further poison her body and reduce her immune system every day when I give her the medication. Her oncologists all agree with us but just say "she has terminal cancer, make her comfortable" I have tried numerous times to get her off and it immediately increases the inflammation. Not good in the brain. I got PMR probably from the stress. I used Dex to reduce it. Took 6 months but I finally had clear markers and just stopped. Kicked my butt for about 2 weeks but I got off. I kicked it. PMR is real because it shows up when your not on a steroid. But the steroid mimics the pain into a vicious cycle that everyone sees as a flare. Your right in my opinion. Most everyone is just hooked on the steroid.
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Sorry to hear about the glioblastoma. I'm a retired neurosurgery nurse.
I don't think this concept is that controversial. I took prednisone for 12 years for "refractory PMR." Adrenal insufficiency was "discovered" only when I could maintain a prednisone dose of 3 mg. A simple a.m. cortisol level determined that adrenal insufficiency was likely so I was referred to an endocrinologist.
Long story ... but the only reason I could maintain a 3 mg dose of Prednisone was because I was started on a biologic medication called Actemra (tocilizumab). The endocrinologist said she was surprised that I had been on Prednisone so long. She wasn't optimistic that my cortisol level would ever improve. She said I might need to take Prednisone for the rest of my life.
I had to wait months for my cortisol level to improve but it did improve enough for my endocrinologist to say my cortisol level was "adequate." She said it "might be safe" to discontinue Prednisone but she wouldn't make any predictions about what would happen.
I discontinued Prednisone going from 3 mg to zero in about a week. Many things happened but not a PMR flare. I still do a monthly infusion of Actemra and haven't had any PMR relapses in 3 years. My quality of life has improved immensely since discontinuing Prednisone.