Kevzara (sarilumab) to treat PMR

Please let us know how it goes. BTW, I was diagnosed with PMR right after my 50th birthday. So 54 isn't unrealistic.

Congratulations on tapering to 8 mg of Prednisone, that is awesome!! Kevzara is definitely the first hope, aside from Prednisone, that we have had to to treat PMR. Kevzara was actually approved for the treatment of PMR in February 2023 and it looks like there are a growing number of our group members who have started using it. Hopefully you will hear some good reports from them. This info from Regeneron may be helpful https://www.google.com/url?q=https://investor.regeneron.com/news-releases/news-release-details/kevzarar-sarilumab-approved-fda-first-and-only-biologic&sa=U&sqi=2&ved=2ahUKEwiT55bmhu-BAxU9nGoFHfuDBPgQFnoECAcQAQ&usg=AOvVaw0ddRjR1js_3LSda96CQjDE.

I was placed on Kevzara but unfortunately had to stop treatment due to a benign hepatic liver cysts that enlarged during my one month of treatment. I did not have any other side effects but did not have any relief from my pain either. My doctor actually started me on Kevzara before we attempted to taper my prednisone (which is apparently what they did during the trials). It looks like a few members may be trying to reduce/stop prednisone use before they start Kevzara but I am not sure if I misunderstood their comments. I hope this info is helpful and I pray that your normal is just around the corner! ❤️

Update on my original post. I stuck with Pred and am almost finished! Down to just. 5mg. I do have some discomfort in hips and shoulders but OTC pain meds work ok. All labs normal.

Why did you decide to stay on prednisone? Why can't you taper off prednisone?

If you started prednisone in June 2022 when you were diagnosed with PMR then it seems like you are making good progress. However, if you have recurring symptoms and/or have a relapse that requires you to increase your prednisone dose maybe you should reconsider Kevzara.

There is no guarantee that Kevzara will work but you won't know unless you try it to see if it works or not.

I have made it down to 0.5 mg Pred and will be off completely in a few weeks. There is no need for Kevzara and whatever side effects it brings. I have not had trouble tapering off of Pred - 15mg to 0 in less than 18 months is not bad. If I can manage the discomfort I have with occasional OTC meds, that is far better than Kevzara.

Almost 9 years of PMR. After several flares, I’m on 5 mg prednisone and 12.5 methotrexate. At first, the methotrexate brought my CRP and Sed rate to normal levels but suddenly in October had the most recent flare and still have moderate neck pain. My rheumatologist wants me to start on Kevzara and I’m wondering about other people’s experiences. (I had endometrial cancer 8 years ago so a little concerned)

Kevzara is FDA approved for PMR.

I started a similar biologic called Actemra after 12 years of PMR. My rheumatologist said Actemra was probably my best hope of ever getting off prednisone and added that I was "too young" (65 years old) and "too healthy" to take prednisone for the rest of my life. I wasn't sure that I was that healthy but things have improved dramatically after I got off prednisone.

Both Kevzara (sarilumab) and Actemra (tocilizumab) are biologics called IL-6 receptor antagonists.

Kevzara is FDA approved for PMR.

Actemra is FDA approved for GCA.

Neither biologic comes with any guarantees. They also have the potential for serious side effects. Having been on long term prednisone, I also had serious side effects from prednisone.

Actemra worked for me ... I was off prednisone a year after starting Actemra. My rheumatologist believes I'm better being off prednisone and on Actemra instead. I would have to say that assessment is true.

I still do Actemra infusions every 5 weeks. I'm not completely "cured." I just don't seem to have all the problems associated with long term prednisone use. I haven't had any flares of anything for 2 years. The flares I had were when my Actemra dose wasn't adequate and once again when Actemra was stopped because of problems with the supply chain.

Hello @rayabw, You will notice that we moved your post into an existing discussion on the same topic here. If you click the link below it will take you to the beginning of the discussion where you can read what others have shared about Kevzara:
--- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/

You may also want to take a peek at the following related discussion:
--- Starting treatment with Kevzara: My journey: https://connect.mayoclinic.org/discussion/first-dose-of-kevzara/

It sounds like you have had a long struggle with PMR. Do you keep a daily pain log and dosage to track your symptoms?

No I don’t keep a pain and dosage log. Never thought to do that. Maybe I ll begin now.
Thank you for directing me to the posts about Kevzara!

How has it been the past 9 months of using Kevzara??
Pain level?
Blood work?
Side effects?
Thank you!