Just Started Actemra

Posted by sandiw77 @sandiw77, Aug 28, 2024

I just wanted to share some info about my new treatment but wanted to give you a little history first. I was diagnosed with PMR in March 2022 and felt like 25 mg of Prednisone was a miracle. I was completely pain free and genuinely thought that I should cancel my retirement plans and work for another few years. That changed dramatically as soon as we started to taper my Prednisone dose. Even very small reductions (.5) seemed to be agonizing and after 2 + years I am still on 20 mg of Prednisone. Obviously, I needed a Biologic. I tried Kevzara but after 2 shots I ended up being taken off of it due to a side effect. I know that Kevzara and Actemra are very similar but my doctor decided to write a request to get insurance to approve Actemra for PMR treatment and it was approved. I had my first infusion yesterday and am praying for great improvement and no side effects so that I can finally get rid of Prednisone. After 1 infusion, I feel hopeful. Wish me luck! ❤️

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Colleen Young, Connect Director | @colleenyoung | Dec 23, 2024

In reply to @nanniepie "Thank you." + (show)

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/

jeff97 | @jeff97 | Dec 28, 2024

In reply to @nanniepie "Thank you." + (show)

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.

DadCue | @dadcue | Dec 28, 2024

In reply to @jeff97 "I've been on Actemra for 5 months along with prednisone to treat GCA. The only side..." + (show)

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.

jeff97 | @jeff97 | Dec 28, 2024

In reply to @dadcue "Both Prednisone and Actemra can cause increased cholesterol levels. I took a atorvastatin for years when..." + (show)

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.