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Better to be in some pain or better to up the dose of prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Aug 21 12:56pm | Replies (80)Comment receiving replies
Yes it was Actemra (tocilizumab). It isn't so new anymore and many people are on Actemra for mostly GCA.
When I started Actemra more than 6 years ago it had been recently FDA approved for GCA. I wasn't diagnosed with GCA ... only PMR among other things. My problem was that it was "impossible" for me to taper off prednisone without having a major problem. When my rheumatologist wanted me to try Actemra, it was called my "best chance" of ever getting off prednisone.
I was under the impression that Prednisone was the "only option" for PMR. Also I was being told that Prednisone for the rest of my life was an acceptable outcome. My rheumatologist disagreed with whoever was telling me those things. He said it wouldn't be easy to get Actemra approved for me. However, if I was willing to try Actemra, he would do everything he could.
Actemra was approved and it worked brilliantly for me. I was able to taper off Prednisone for the first time in 12 years. I haven't needed any Prednisone in more than 4 years. I have no side effects from Actemra.
Not only was I able to taper off Prednisone ... 5 other medications that were treating Prednisone side effects have also been discontinued. Almost all of the other medications I was taking while on Prednisone have been discontinued.
Replies to "Yes it was Actemra (tocilizumab). It isn't so new anymore and many people are on Actemra..."
Thank you for the info. I am very frustrated about the additional medications needed to treat the side effects of prednisone- all with their own side effects. One medication actually has the side effect of possible muscle and joint pain. So I struggle with what is causing how I feel. Is it PMR or side effects? I am down to 5mg prednisone. I also take a daily injectable for osteoporosis, a weekly injectable for blood sugar, MTX, Humira once every two weeks (for possible seronegative RA) - all related to being on prednisone for two years. My Dr says my insurance won’t cover Kev - yet. So I am spending insurance money at at least $1500 a month for all these other meds to treat symptoms related to prednisone. Ah, the logic of it all. And to still have pain and elevated inflammatory markers Up the prednisone?
Rereading this please know I really am an optimist filled with hope - but there are days.
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Thank you. I'm going to ask my rheumatologist about Actemra!
Additionally, you mentioned that you were diagnosed first with PMR before GCA. I'm a little worried about missing a GCA diagnosis. I've read and reread the symptoms for GCA and I don't have most of them. I do have an annoying, dull ache at my right temple. I have for a few months, which worries me. What symptoms did you experience that helped you diagnose GCA?
Thanks so much for your response.