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How hard is it to get on Actemra (Tocilizumab) with PMR?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 2, 2023 | Replies (51)Comment receiving replies
I don’t think the FDA distinguishes between zero positive or negative RA. Either seems to be approved for Actemra. I don’t mind going once a month for the infusion. I am okay giving myself injections, but prefer one and done so I don’t have to think about it. I am just so grateful that after trying so many different drugs over more than four years that Actemra has put me into remission. I would hope it won’t be long before it is approved for PMR. Best wishes to you for better health!
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How did you feel about PMR being treated with prednisone? I still struggle with that issue even though I was never against taking prednisone for PMR for about 10 of the 12 years I was being treated with it. I'm still not against prednisone but now I think Actemra should have been tried sooner. I can't change the past. My rheumatologist said Acterma wasn't an option until a few years ago.
My rheumatologist "encouraged" me to taper off prednisone and I tried many different medications too. I tried to taper off but there was no way I was going to let the pain get too severe. I think I "tolerated" more than enough pain most of the time.
Actemra wasn't offered until I told my rheumatologist in no uncertain terms that "I can't taper off and I wasn't going to try anymore." A few months later, Actemra was offered but it needed to be approved first. My rhematologist wanted to make sure I was willing to try it before he submitted the approval request.
A year later, I was off prednisone. It wasn't smooth sailing after Actemra was started. I was able to go from 10 mg to 3 mg in 4 months but I had to stay at 3 mg for about 6 months because of adrenal insufficiency. That was uncomfortable and I didn't feel well but the pain was controlled. My endocrinologist finally gave me the green light to go from 3 mg to zero in one step because my cortisol level was "adequate" I took 2 weeks to go from 3 mg to zero.
As soon as I got off prednisone the first time, I had a massive flare of uveitis and went right back on 60 mg of prednisone again. My ophthalmologist said Actemra wasn't going to work for uveitis and started me on Humira which needed more time to work. After about 2 months on Humira and 15 mg of prednisone, the pain crept back in. I couldn't reduce prednisone any lower than 15 mg.
Long story but my rheumatologist thought 4 months of Humira was enough time for it to work if it was going to work. I told my rheumatologist that I didn't think Humira was working like Actemra did. That was when Actemra was restarted except with weekly injections instead of every 2 weeks. I tapered prednisone from 15 mg to zero in 2 months the second time.