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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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@redboat

@lmoross Were you on Prednisone when infected after your Alaska trip, or any other immune suppressing drugs?

I have been on Actemra for about 18 months (now injecting every 2 weeks), and have been avoiding indoor spaces in close proximity to people. So no planes, buses, crowded restaurants, indoor performances, etc. This has been quite limiting, and my rheumatologist says she wouldn't be quite as careful. She says the danger is much less than if I was taking Prednisone. But I'm still concerned that Actemra alone leaves me vulnerable to infection.

Were you on Actemra alone until May 2023, or still also taking Prednisone?

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Replies to "@lmoross Were you on Prednisone when infected after your Alaska trip, or any other immune suppressing..."
Linda Moross | @lmoross | Sep 10 4:45pm

I wasn’t on prednisone but only actemra when I got sick. I was on prednisone from 2018 to 2022. Took Actemra infusions from 2022 to 2023. Caught the influenza A on the trip. Planes, buses, cruise ship, etc. But, had not been sick for 10 months on the actemra before that. Always was cautious. It did put me into remission where I have been since May 2023. No medication since then.
Best wishes for good health.

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DadCue | @dadcue | Sep 10 5:41pm

My first Actemra dose was an injection on January 1st, 2019. I'm presently doing a monthly infusion. By comparison, I live on the wild side! Anyone who knows me would laugh if they read what I just wrote.

This past April to May, I was in Florida for a week. Then I completed a 2-week trans Atlantic cruise to Barcelona. After 5 days in Barcelona, we did another 10 day Mediterranean cruise to Athens. I don't know how many buses, trains, subways and planes I was on. I took in a show every night on the cruise and a couple of shows on land too.

I caught a cold (tested negative for Covid) while cruising. The cold was the only health problem that I encountered and I isolated myself for three days.

My not being able to get an Actemra infusion for 7 weeks was a bit of a stretch. I was feeling some familiar aches and pains. My inflammation markers were elevated prior to my Actemra infusion after getting home. I saw my rheumatologist who commented that an Actemra infusion every 4 weeks will be continued indefinitely.

I am making up for all of my lost years ... I guess! We are planning a trans Pacific cruise to Australia next year.

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