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Are others with GCA and PMR on Tyenne Monthly Infusions?
Polymyalgia Rheumatica (PMR) | Last Active: Mar 14 2:01pm | Replies (58)Comment receiving replies
@julieahp For what it is worth, I see a rheumatologist and a physician's assistant at the rheumatology office. The PA was like your rheumatologist, and implied that I would need to keep taking Actemra indefinitely. But I saw the rheumatologist at my last appointment, and for the first time in a year and a half, he started talking about the potential end of my treatment. He wants me to keep taking weekly Actemra injections for another few months, to get me through to 2 years of treatment. Then he plans for me to switch to injections every other week for a year, and then stop treatment. Hopefully it will work out that way. I consider my case of GCA to be fairly severe, but my rheumatologist thinks it will be safe to stop treatment after 3 years.
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@jeff97
Hi Jeff, Thanks for sharing this info. It is definitely helpful to have this support group to learn others' experiences and, in an indirect way, have access to other doctors' recommendations to share with our doctors. That 2 years (minimum) seems to be a common expectation. Since they are monitoring liver & kidney (ALT, AST, Creatinine labs, others?), I'm content to let Tyenne beat GCA into submission for awhile (on Tyenne for 17 mos now) and not "rock the boat".
I know we're all rooting for you to stay well after you stop treatment. That would be some fantastic news.
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@jeff97
My rheumatologist and I discuss "possibilities" but in reality, there is no plan to ever stop my Actemra infusions. I'm into my 8th year of being on Actemra, I started with injections every 2 weeks before switching to weekly injections. Now I do an infusion every 4 weeks but I have gone almost 7 weeks between infusions.
I have a general sense of how long I can go without an infusion. It varies from 4-6 weeks to actually do my infusion but my rheumatologist doesn't want me to go more than 6 weeks.
Sometimes I feel like I don't need the infusions anymore. We talk about stopping Actemra but my rheumatologist only says that I don't need to stop Actemra. My rheumatologist would let me stop Actemra but he doesn't understand why I would do that. That is in contrast to how my rheumatologist felt about me being on Prednisone. When I was taking Prednisone --- it was like every visit emphasized how to get me off Prednisone and how I could NOT be on Prednisone any longer. I didn't know how I would ever be able to taper off Prednisone.