Starting KEVZARA: Anyone experience side effects?

I can only speak from personal experience with Actemra (tocilizumab) which was offered to me 13 years after the onset of PMR. I was able to taper completely off prednisone. I don't know if I would feel the same if I ended up needing prednisone AND Actemra.

My rheumatologist told me before starting Actemra --- if I only needed 3 mg of prednisone, Actemra never would have been offered to me. For Actemra to be approved for me, other alternatives like methotrexate had to be tried.

Vis-à-vis prednisone, I have practically no side effects from being on Actemra for 5 years. Additionally, many of my prednisone side effects resolved after Actemra was started.

There was no guarantee that I wouldn't have any side effects from Actemra. Likewise, there was no guarantee that Actemra would even work for me. My rheumatologist said we wouldn't know these things unless I tried Actemra. The same applies to Kevzara.

I'm glad that I decided to try Actemra and I have no regrets. If I develop side effects or if Actemra stops working, I now know that Actemra can be easily stopped when it wasn't easy to discontinue Prednisone. Now, my rheumatologist says Kevzara is another option for me.

When I was warned about the "potential" side from Actemra. I did a side by side comparison of potential side effects from Actemra with those of Prednisone.
https://www.drugs.com/compare/actemra-vs-prednisone
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You can do something similar with Kevzara.
https://www.drugs.com/compare/kevzara-vs-prednisone
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It is good to get personal experiences from people who have used Kevzara. That would be better because I haven't ever been on Kevzara but I'm told it is similar to Actemra.
https://www.drugs.com/compare/actemra-vs-kevzara
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I wish you luck with whatever you decide.

I've been on Kevzara about 8 months. I haven't noticed any negative side effects as far as how I feel. My labs have been abnormal, with low white cells and elevated cholesterol, which are both listed as potential side effects. My PMR symptoms pretty much disappeared after a month or two on the drug and I was able to easily drop from 6 to 5 mg prednisone. Then other pain arose and when I tried to drop below 5 mg I had a major return of the PMR symptoms. In January when my supply of free drugs runs out I will go off Kevzara and see what happens. I can't afford it without the drug company support. I think it helps and maybe I would have been able to lower the prednisone if I tried again.

Thanks for responding I had been on 5mg for a long time but a flare occurred and 7.5mg wouldn’t handle the inflammation so rheumatologist so in November put me up to 20mg going to 10 in couple weeks.

Thank you for your response. I’m hoping none or little side effects. I know it’s very expensive. For now my insurance pays most of it.

My PMR journey started in January 2022. Prednisone relieved the pain but it messed with my head. I couldn't wait to get it out of my system, but every time I went below 5 mg the pain in my shoulders, hips and knees returned. My rheumatologist recommended Kevzara. I started self-injections every 14 days in May of 2023. I was totally off prednisone by the end of the following month. I've always been very healthy and active. It's hard to believe how crippled I was just a few years ago. My labs are clean and I feel good. I'm retired now, ( I believe my PMR was stress induced). I'm back to walking several miles a day and enjoying my life. In June, I started to wondered if my PMR episode was behind me. I tried to slowly extend the days between injections but by day 19, I could feel symptoms returning. I'm back to two week intervals. Kevzara is covered by my insurance. I'm grateful for the relief it provides, but later in 2025 I hope be off it as well.

Thank you for your help

@grumpa, you may also be interested in this related discussion:
- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/