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Kevzara (sarilumab) to treat PMR
Polymyalgia Rheumatica (PMR) | Last Active: Aug 24 6:34am | Replies (162)Comment receiving replies
My doctor is hoping to start me on Kevzara and we're now in a stage 3 appeals process with my insurer who keeps denying it (saying it's not identified for PMR - apparently they missed the memo from February. Thanks all for posting your experiences - I'm 53 and was diagnosed last August after an initial diagnosis of lyme back in 2014 when I was just 44 (and PMR ruled out b/c I was too young.) Have been unable to get below 8 mg of pred daily. Now trying to go down .5 mg every ~3 weeks and it's tough. And then flares seem to come out of nowhere.
Replies to "My doctor is hoping to start me on Kevzara and we're now in a stage 3..."
I am having the same issues with insurance. Saying only approved for RA. On third peer to peer appeal. Fingers crossed for both of us. Prednisone has too many complications for me. Thanks for posting!
@lauras18 @sharonmc18 @sandiw77 could you tell us if any of you are on a Part D plan ? Thank you
In my attempt to find something else re: the local Massachusetts ACP chapter policy on biologicals I came across these two things :
1) https://rheumatology.org/share-your-story
"Federal and state policies have real-world consequences that affect access to rheumatologists, the cost of medications, medical research funding and so much more. That’s why the American College of Rheumatology and our Simple Tasks campaign want to hear your story, so we can share your experiences with policymakers and work to solve problems rather than create them. Answering this short survey can go a long way in supporting our efforts. Thank you for sharing!'
2) and this pretty sad scorecard map - especially for New England - only a C???
****And don't forget the Sanofi/Regeneron connection to Kevzara -- the pmrandyou.com pamphlet has LINK to Arthritis Foundation in the 'support' section ****
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It is incredible how often people can't seem to decrease their prednisone dose below +/- 7 mg. That dose corresponds to roughly the amount of cortisol that the adrenals need to produce on a daily basis to allow the body to function properly. I think the problem with adrenal insufficiency which is a known side effect of long term prednisone use may perhaps contribute to the difficulty that people encounter at that stage in tapering off prednisone.
I was diagnosed with adrenal insufficiency after Actemra allowed me to taper down to 3 mg of prednisone. You need to be less than 5 mg of prednisone to have your cortisol levels checked. Otherwise, prednisone will continue to suppress your adrenal function at doses greater than 5 mg. The lab value for your cortisol level won't be an accurate measure of how well your adrenal glands are functioning until your prednisone dose is lower.
I hope you have good luck with Kevzara.