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Amount of time on Actemra

Posted by jmwm @jmwm, Sep 28, 2025

Has anyone been on Actemra for 2 years? My rheumatologist told me I would be on the infusions for 2 years. I'm worried about the side effects for that amount of time on the infusion. Has anyone had stomach tears or liver damage?

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ropnrose | @ropnrose | 1 day ago
In reply to @ropnrose "I started Actemra infusions in January 2025. At that time, my rheumatologist told me that I..." + (show)
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I started Actemra infusions in January 2025. At that time, my rheumatologist told me that I would likely be on it for at least 2 years and then taper me off of it. There's a study from England that showed, individuals who quit taking Actemra after a year had a 50% chance of recurrence of GCA. I can't put my hands on it now, but it has been referenced in this support group.

Since starting Actemra, I was getting respiratory infections, which I never had before. The doctor reduced my infusion dosage. So far so good. I do get quarterly bloodwork done, to check my liver functions and inflammatory markers, among other things.

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@ropnrose Prior to receiving Actemra infusions, my doctor ordered a tuberculosis screening. Also, ran blood counts, liver tests, ESR, and cholesterol, which I also get quarterly. These tests are in line with the recommendations on the Actemra manufacturer's web site. https://www.actemra.com/ra.html

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