Actemra

[Darcy2000]

Has anyone been on it for GCA?

What was your experience?

[SnazzyD]

Hello there. This comes up a lot. Here’s a past post link to get you started but if you do a search on “Actemra” in the top right box you’ll get more. When you do the search a box comes up so you can choose which communities you want the past posts to come from. Relevant posts also turn up on the right side of the page.

healthunlocked.com/pmrgcauk...

Any questions, do ask 🙂

[PMRpro Ambassador]

And while searching - try with tocilizumab as well. That's the substance name. But you do need to restrict to PMRGCAuk because it has been used for RA for years too.

I do have to say that at the moment I wouldn't be even thinking of going on it - not with Covid 19 still in the air.

[Luciejc]

I started Actemra 4 weeks ago and will have my 5th injection this Friday. I get a headache about an hour later but no other ill effects. I am on 12.5 mg prednisone. I live in NYC and have not left my home in 2 weeks. Will have a virtual appointment with my Dr on Thursday.

[Darcy2000 in reply to Luciejc]

Wow I am still at 40 mgs of Prednisone and can’t start the Actemra till June due to other health concerns are addressed. Glad to hear that you had no serious side effects....my CRP went up

To 50 with some mild jaw discomfort and as I had the biopsy and confirmed my Rheumy is thinking the Actemra will help the issues and reduce the Prednisone

[Luciejc]

I was diagnosed in August 2019 and started with 50 mg of prednisone.Have had ever side effect possible from it and decided on a second opinion. The new rheumatologist has prescribed the Actemra. I thought my first Dr was tapering too quickly. My GCA presented with throbbing headache, neck, jaw, and shoulder pain. Good luck and hope your health issues are resolved quickly. I take more medications than I can count!

[Darcy2000 in reply to Luciejc]

Honestly if I hadn’t had the biopsy and the high C reactive protein at 60 I would not know I had GCA..no pain it was only because I had very mild jaw tightness didn’t even need to take aspirin... mind you I was on prednisone for my PMR at

About 11...I wonder if I need the Actemra but I really would like to get off the Prednisone