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Replies to "Thank you for sharing your experience. In the whole scheme of things, I haven't been on..."
Polymyalgia Rheumatica (PMR) | Last Active: 3 days ago | Replies (16)
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Thank you for sharing your experience. In the whole scheme of things, I haven't been on Prednisone for very long (10 months). My goal is to eliminate Prednisone from my life. It was yours and others who gave me the knowledge about the benefits of Actemra. My rheumatologist was pushing Kevzara, but my insurance does not cover it. She did mention that I "haven't been on Prednisone for that long". Six months was long enough for me and I didn't see any benefit for waiting. It didn't take much for me to convince my rheumatologist to prescribe the Actemra infusions. I am grateful to this community and the experiences that people share about PMR. The knowledge gives me control over my situation.
Replies to "Thank you for sharing your experience. In the whole scheme of things, I haven't been on..."
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I'm not sure about Actemra giving back control. In a way... prednisone takes control. Prednisone isn't addictive but my body developed a "dependence" on me to take prednisone every day. I had to replace the cortisol my body needed. I had no idea how much prednisone I needed to replace the cortisol. I only knew that I needed more prednisone whenever I had more pain. I didn't know what was causing all the pain but I suspected it wasn't only for PMR.
It became impossible for me to know how much prednisone I should take every day. I had a discussion with one of my doctors once. I asked how much prednisone I needed and he seemed perplexed. Then he said it was a million dollar question because nobody knows the answer. At least with Actemra ... I don't worry about how much prednisone to take every day. I worry about being on Actemra but my doctor controls my infusion dose and I don't want to control that.
If you ask me, 10 months of prednisone is long enough. You are at the dose of prednisone when it is more challenging to reduce your dose. I hope that Actemra will make it easier for you to taper off prednisone.