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What's your experience with Actemra for GCA?

Polymyalgia Rheumatica (PMR) | Last Active: Sep 11 6:04am | Replies (33)
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@pickle7

I’ve been taking Actemra injections for 1 1/2 yrs. Feeling good and markers are normal but I’d like to discontinue the Actemra at some point. My Dr. has advised that I should continue this treatment indefinitely. Has anyone discontinued Actemra as a treatment for GCA and been in remission?

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Replies to "I’ve been taking Actemra injections for 1 1/2 yrs. Feeling good and markers are normal but..."
John, Volunteer Mentor | @johnbishop | Jun 12, 2022

Welcome @pickle7, My only experience is with PMR. I'm wondering if @marilyncarkner, @paddington and @tsc may have some thoughts on continuing or discontinuing treatment with Actemra. I did find some information on the topic that may be worth discussing with your doctor if you want to discontinue the treatment and your GCA is under control.

Nearly Half of Giant Cell Arteritis Patients on Actemra for a Year Stay in Remission After Stopping It: https://creakyjoints.org/treatment/tocilizumab-actemra-giant-cell-arteritis-prolonged-remission/

Are you on any other treatment along with the Actemra and are your GCA symptoms gone?

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