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Polymyalgia Rheumatica (PMR) | Last Active: Dec 28, 2024 | Replies (25)
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Replies to "Thank you so very much for sharing that. It honestly made me feel better about something..."
Don't expect immediate pain relief like when prednisone takes effect. You might not have any decrease in pain after the first or second infusion or at least I didn't feel any different. I didn't think Actemra was working until I was able to taper my prednisone dose lower without having a flare.
My rheumatologist would have been pleased if Actemra only allowed me to reduce my Prednisone dose down to 3 mg. It took me nearly a year but I exceeded expectations and tapered off Prednisone completely.
I had prednisone induced adrenal insufficiency so an endocrinologist was consulted. It took a long time but eventually my cortisol level improved. The endocrinologist wasn't very optimistic that I would be able to get completely off Prednisone so she was also pleased.
https://www.endocrine.org/clinical-practice-guidelines/glucocorticoid-induced-adrenal-insufficiency
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I took Prednisone to treat PMR for nearly 13 years so adrenal insufficiency was expected. What was unexpected was that my cortisol level improved and I didn't need Prednisone for the rest of my life.
I have now been completely off prednisone for more than 3 years. My symptoms of adrenal insufficiency were similar to PMR symptoms with overwhelming fatigue tossed in. I also had dizziness and "black out spells" but I didn't actually pass out or faint. Prednisone caused me to have high blood pressure and I was on 3 blood pressure medications. After I got off Prednisone, all my blood pressure medications were stopped one by one because of a low blood pressure. Now I'm off all 3 of my blood pressure medications in addition to being off prednisone.
Taking Prednisone for as long as I did caused problems for me. I sincerely hope Actemra works for you! Actemra doesn't work for everyone but it certainly has changed my life for the better.
People say prednisone is a miracle. For me, being able to taper off Prednisone after such a long time was my miracle.