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Has anyone tapered off Actemra?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 11 9:33am | Replies (8)Comment receiving replies
I was on Acterma for 2 years. I had infusions of the drug once a month. I was diagnosed with Giant Cell Arthritis. I have been off the infusions for 3 months. The sedimentation rate is what needs to be checked to see if inflamation returns. The normal range is 1 to 20. I was at 61 when I was diagnosed. When I was getting infusions my sed rate was 0. I have been off the drug for 3 months and I am now at Sed Rate of 11. Checking your Sed Rate determines if inflammation returns. I have been told if rate goes above 20 I will need to do infusions again.
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This gives me some hope for eventually being able to stop my Actemra infusions. I have been able to go longer than a month between infusions but my inflammation markers trend upward. I wouldn't say my pain increases that much but it does increase some.
My rheumatologists interprets my lab values and says I definitely need to continue Actemra. After about 3 attempts to increase the time between my infusions, now I just stay on a monthly schedule. Currently, there is no plan to discontinue my Actemra infusions. I'm okay with staying on Actemra because I don't seem to have any side effects from Actemra.
The only relapse I had was when Actemra was stopped for 6 months. It wasn't my rheumatologist's intention to stop Actemra. There was a shortage during the Covid epidemic and no Actemra was available. The relapse I had was bad and led to increasing amounts of Prednisone along with a different biologic (Humira) which didn't seem to work very well. The experience I had with that relapse alone was enough to make me want to stay on Actemra.