Kevzara (sarilumab) to treat PMR

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.

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.

@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 ****

@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 ****

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!

Yes, Methlttexate does have so many risks. They want me to take it instead of my pain medication and sorry I am not willing to give up what works just because of the Opiod Crises. Many people do well on Hydrocodone and I am one who does have any issues except DR’s all but for forcing me off. Doctors are trying to force patients off something onto something in my opinion could be more dangerous. No one can dictate you need to suffer. I’m my best advocate for sure.

Hi @sheralee, I just had my first Kevzara injection on Tuesday. So far, so good. No side effects and a very slight improvement in shoulder pain. I’m on 17.5 mg of prednisone and my pain has been present since my last taper. I have been unable to taper for the last 2 mos. But have bounced around with prednisone for the past year with one taper as low as 12 mg only to inch back up again. I’m exactly who they describe in the Kevzara literature. Praying that I can move forward and leave Prednisone and the bad side effects behind. Prayers for remission for us all! ❤️
Sandi

My rheumatologist seemed to feel that Kevzara and Actemra were similar and that it did not matter which was used as I taper off Prednisone. Both suppress the IL-6 immune system pathway. I'm on Actemra only because my medical provider gets it more cheaply, so they prefer its use. My guess is that the Kevzara side effects are far less than Prednisone; Kevzara is highly targeted and is not a hormone, so likely tolerated far better than Prednisone.

Personally, I wouldn't take the chance on any new drug due to my PMR being a direct result of the Covid Booster, (last September 2022) which was too new in its infancy to know the dangers! Never again. Of course, that is just my opinion. I tolerate Prednisone very well and tapering from 15 to 12.5 did not even phase me except the fatigue continues. I feel 100% better getting a second opinion from a great Rheumatologist. I will be on Prednisone for a while, another 18 months if not forever. Important to note and share that my blood sugar has dropped almost one point since I started back on Prednisone in March 2023. SIide effects can increase A1-C levels dramatically, however, it improved mine. I went from a 6.1 down to a 5.4 level. Hasn't been that low in 3-5 years. So Prednisone is actually helping me in more ways than one. I wish you the best results possible on this journey. Everyone is different and presents differently. I get so much from everyone's posts so please do keep sharing with everyone! It certainly helps to know we don't have to go it alone! Deb

Very interested in knowing if you have any side effects with Actema? How long have you been on it. I know it subdues you immune ststem. Do you wear a mask when you go places? I have just been approved to start infusions for PMR. Thank you.