Just Started Actemra

For people following this discussion, you may also be interested in these related discussions:
- Just Started Actemra: https://connect.mayoclinic.org/discussion/just-started-actemra/
- How hard is it to get on Actemra (Tocilizumab) with PMR?: https://connect.mayoclinic.org/discussion/how-hard-is-it-to-get-on-actemra-tocilizumab-with-pmr/
- Anyone tried Actemra (Tocilizumab) to treat PMR? FDA approved for GCA: https://connect.mayoclinic.org/discussion/actemra-tocilizumab-to-treat-pmr/

I've been on Actemra for 5 months along with prednisone to treat GCA. The only side effect I've had from the Actemra is a big increase in cholesterol. My cholesterol was low when I was diagnosed with GCA 6 months ago, but now my primary care doctor wants me to start taking a statin to treat high cholesterol.

Both Prednisone and Actemra can cause increased cholesterol levels. I took a atorvastatin for years when I was being treated with Prednisone. After Actemra was started, I was able to taper off Prednisone.

My cholesterol level dropped to below normal when I stayed on atorvastin. A low cholesterol level combined with a newly elevated CK level raised a concern for statin induced myopathy so atorvastatin was stopped. Currently, I'm off prednisone, atorvastatin and all three of my blood pressure medications while I remain on Actemra without Prednisone.

Cholesterol levels should be routinely monitored while you are on Prednisone and Actemra. If you are able to taper off prednisone it would be interesting to see what your cholesterol level is on Actemra alone.

Thanks, that's good information. I think it will be quite a while until I'm off the prednisone, since I'm currently at 12.5 mg per day. I started at 60, so 12.5 feels much better.

I was thinking that I would never get off Prednisone after taking Prednisone daily for more than 12 years

With Actemra you may be able to taper off Prednisone faster than you think. How long it takes depends more on how long you have taken Prednisone.

I just wanted to share an update. I've been taking Actemra infusions every 4 weeks, since January 2025. I had not experienced any side effects. I was always aware of the potential side effects. Like many of you, I picked my poison and chose Actemra over prednisone. It was a no brainer, really. I haven't had any side effects until 3 and a half weeks ago. I got Covid. First time, ever. I am fully vaccinated. Before, I acquired PMR/GCA in July 2024, I never even got a cold. Before Covid, I had just started getting back into activities that I hadn't participated in for over a year. It was a set-back. I started playing pickleball again yesterday and riding my bike. Seems like I tire more easily than before Covid. Hopefully, it will pass.

Those of you, who take Actemra, have you had an increase of upper respiratory illnesses? Do you wear an N95 mask in 'high risk' situations (indoor crowds)?

I also caught covid after I started on Actemra (October 24) but I have fortunately not had another bout of covid or contracted other illnesses. I do try to take appropriate precautions when I hear that a virus is circulating in my community and I have refrained from large crowds since I was diagnosed. I have worn an N95 mask on occasion too but that has not been often. Blessings! ❤️

Thanks for your response, @sandiw77 ! I, too, refrain from large indoor crowds. I time my grocery shopping, when the store is the least busiest early in the morning. When I first started taking 60 mg. of pred/day, I wore a mask for months. Then, when I began Actemra in January, I was wearing a mask when indoors at public places. I got complacent this summer. I should have known better. I live in a rural community that had a 25% vaccination rate during the height of the pandemic.

Actemra was FDA approved for certain cases of Covid.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8894855/
and
https://www.roche.com/media/releases/med-cor-2022-12-21
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Actemra does suppress the immune system but it is more targeted than Prednisone which broadly suppresses the immune system. I have been on Actemra alone for 4 years. I was more prone to having an infection when I was taking Prednisone for PMR

I think the greatest risk was when I was on both Prednisone and Actemra. Since being on Actemra alone ... I'm not overly concerned about an infection but I try to be careful.

I have never had Covid or at least I haven't ever tested positive for Covid. I received the initial vaccine and several boosters.

Thanks for your response. Right now, I'm at 4 mg. in my taper. I was aware that Actemra was used during the pandemic. I got COVID less than a week after my infusion. I was sick for 3 weeks. I'm glad you've avoided it.