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Is Actemra (tocilizumab) for GCA worth the side effects?
Polymyalgia Rheumatica (PMR) | Last Active: Dec 9 7:18pm | Replies (30)Comment receiving replies
@gertrudedallas I was diagnosed with PMR/GCA in July 2024. The megadose (60 mg) of Prednisone that I was initially on for 6 weeks, pretty much took care of my GCA symptoms. From August 2024 to December 2024, my tapering was going well. However, I was suffering from multiple side effects from the Prednisone, the worst being high blood sugar. It turned me into a diabetic. Also, it increased my cholesterol. In December 2024, I got to 10 mg/day and had a flare. My GCA symptoms returned. I asked my rheumatologist to prescribe Actemra infusions for me. I started them in Jan. 2025. I had a nice easy taper to the beginning of November 2025, when I was totally done with Prednisone. The only side effects from Actemra that I have experienced, is a compromised immune system. I used to never get sick, but I got Covid for the first time in July 2025 and a pretty bad respiratory infection in October. Both illnesses took me almost a month to get over.
Actemra gave my life back to me. I was able to resume the activities that I love. Golf, pickleball, bike riding, camping, and traveling. I don't think I would have been able to taper off of the Prednisone, so easily.
I picked my poison, and I chose Actemra over Prednisone. I'd do it again in a heartbeat.
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@ropnrose
I'm just wondering if your infusion dose of Actemra or the time interval between infusions ever changes. I haven't had any infections or side effects from Actemra so everything stays relatively constant. My rheumatologist has made some adjustments to my dose and infusion schedule to accommodate travel , holidays and various things like that. I'm on an every 4 week infusion schedule but I have gone as long as 7 weeks. My inflammation markers were increasing at 7 weeks so my rheumatologist says I shouldn't go any longer than 6 weeks between infusions.
My actual infusion dose was easy to adjust too. I was on the highest dose recommended based on my weight which was 8 mg per kg. However, now I'm getting 4 mg per kg which is the minimum recommended dose. What I'm trying to say is that your Actemra infusion dose can be adjusted up or down as needed.
For patients receiving Actemra intravenous, you can get anywhere between 4 mg per kg and 8 mg per kg as clinically appropriate. My rheumatologist doesn't plan on ever stopping Actemra as long as it continues to work for me and it keeps me off Prednisone . I have been on Actemra for 7 years and completely off Prednisone for 5 years.
The following link discusses how both the dose and the interval of Actemra infusions are adjusted for RA patients.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4999578/