Kevzara (sarilumab) to treat PMR
I am 54, diagnosed with PMR June 2022 but symptoms started Nov 2021. I have tapered Pred to 8mg and most days my pain is around a 2 or 3 out of 10. Reasonable, I felt for active PMR and I'll take Tylenol Arthritis to help with pain if needed. But, my Rheumatologist wants me off Pred ASAP. He wants me to take Kevzara and says studies have shown that it gets rid of PMR and the drug should be approved to treat PMR by this spring. Has anyone been part of the trials and/or had experience using this drug to treat PMR?
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Hi Sandi!
I started Kivzara 200 before three weeks and got my second dose last week. I already feel a slight improvement. For now, no side effects. I am tapering Prednisone (now 6 mg) and intend to stop Metotrexate 15mg )which was no use for me at all.
That is great news, @pointer134! I pray that you continue to see improvements with no side effects. Please keep us posted. Blessings! ❤️
Sandi
With Kervaza there are none of the prednisone side effects? I’m currently at 8 mg of prednisone and have hand tremors, fatigue, weight distribution issues, moon face, and a stomach ulcer. Would love to get all that back to normal.
Good luck @pointer134 you started Kevzara on my birthday ! : )
@southtexas @sandiw77 @pointer134 @johnbishop Good afternoon all - the weather is beautiful today in Boston area! I'm pinging a few of you who have said they are starting Kevzara. I started a post called " Can we make PMR funny ? Can we fight the immune cells involved ? " Asking the following:
Do we know what cells we want to get rid of or how powerful the anti-iL-6R drug KEVZARA is in that fight? ... My own digging suggests that research is ongoing certainly for the first question ( meaning - there is probably antigen presentation to CD4+ T cells) . I ask those in group who are starting on KEVZARA - how has the pathophysiology of PMR been presented to you **? Have you been coached to imagine the drug working ? As an example , using "guided imagery" is where a person with cancer imagines Pac Men (from the old Pac Man video game) gobbling up bad cancer cells.
* *Well today i stumbled upon a very informative video given by Leonard Calebrese ,DO from the Cleveland Clinic. It explains many things about the IL-6 pathway in a concise way !! If john would approve the link it is pmrandil6-dot-com and under the resources tab you eventually get to a video you can play . I will share this instead of a 10 page manuscript ( e.g. the 2022 review Ingrid E. Lundberg et,al.) to my non- science friends and family : )
Here's the link to the video @nyxygirl and others.
--- Video about the pathophysiology of PMR and the role of elevated IL-6 in PMR:
https://www.pmrandil6.com/resources/
Have been on prednisone 20 since Jan and unable to reduce beyond 15 . Labs were elevated so back to 20. Took first dose of Kevzara a few days ago. Anxious to see if this helps reduce my prednisone. Labs were all normal but I still get pain behind head and shoulders middle of day.
@gmanurse, you described my troubles with tapering prednisone almost exactly. I have also started on Kevzara and am praying for resolution with labs and pain levels. Best to all of us on this journey!
Thanks Mary! Best of healing to you too!
I completely understand about not trying anything new and untested-- I got PMR after having Covid :(. However, the Kevzara is not "new" it's only just approved for PMR. It's been used successfully for RA patients. I'm about to start as Methotrexate isn't conducive to my medical history.