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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: 1 hour ago | Replies (253)Comment receiving replies
Sorry to hear that you're having a flare. I have a rheumatologist, but I felt comfortable adjusting my dosage when I had a flare. I told her what I was going to do and she concurred. I have learned a lot in this forum and feel like I can take charge of my care. There's no 'standard' dosage. Everyone reacts differently.
Has your doctor ordered bloodwork to check your ESR and CRP (inflammatory markers)? I was diagnosed with PMR and possible GCA in July 2024. I started with 60 mg. of prednisone. I did the taper and when I got to 10 mg in November, I started getting more achy. In December, I was down to 8 mg and had a flare during the holidays. I started getting my GCA symptoms again. In the beginning of January, I requested that my rheumatologist order Actemra infusions for me. I didn't want to get on the 'taper/flare/increase prednisone dosage/taper...' roller coaster. (I had horrible side effects from the prednisone.) Started in mid-January and getting them every 4 weeks. I haven't felt better since last spring. Actemra is prescribed to treat GCA, but some doctors will prescribe for PMR, too. You might want to have this conversation with your doctors.
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"There's no 'standard' dosage. Everyone reacts differently."
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Also, no single best way to taper off Prednisone. It is mostly the trial and error method despite elaborate tapering schemes and other recommendations.
Trial and error applies to Actemra to a certain extent but not like prednisone dosages and tapering. I was told that I wouldn't know if Actemra works until I tried it to see.
Just don't let anyone convince you that Prednisone is the "only option" and that prednisone side effects are "easy to manage" compared to the "serious" side effects from Actemra. Certainly not true in my case. Actemra worked well for me with no serious side effects and I was able to discontinue prednisone relatively fast. When I asked my rheumatologist if he knew if Actemra would work ... he said it was an "educated guess."
The other advantage of Actemra in my way of thinking -- it is easy to stop if it doesn't work or when you have side effects. This aspect is rarely mentioned when comparing it to Prednisone. To the contrary, prednisone is very difficult to stop after long term use. I can't underestimate the Prednisone side effects I had and they were NOT easy to manage.