Kevzara (sarilumab) to treat PMR

Posted by hfoster @hfoster, Oct 11, 2022

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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@sandiw77

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

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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.

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@pointer134

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.

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That is great news, @pointer134! I pray that you continue to see improvements with no side effects. Please keep us posted. Blessings! ❤️
Sandi

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@sheralee

Dear Friends-
My rheumatologist wants to start me on Kevzara & wean down off prednisone. This got approve for PMR in Feb & was for only RA before. It sounds promising, but infection strategy may be high compared to prednisone. If you have any comment or opinion or dguidance, please share with me.

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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.

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@pointer134

Started Kevzara200 last Sunday.Get every two weeks. For now 10 Prednisone and 15 Methotrexate. Will start tapering in one week. Anxious about serious side effects of Sarilumab.

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Good luck @pointer134 you started Kevzara on my birthday ! : )

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@sheralee

Dear Friends-
My rheumatologist wants to start me on Kevzara & wean down off prednisone. This got approve for PMR in Feb & was for only RA before. It sounds promising, but infection strategy may be high compared to prednisone. If you have any comment or opinion or dguidance, please share with me.

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@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 : )

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@nyxygirl

@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 : )

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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/

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@sheralee

Dear Friends-
My rheumatologist wants to start me on Kevzara & wean down off prednisone. This got approve for PMR in Feb & was for only RA before. It sounds promising, but infection strategy may be high compared to prednisone. If you have any comment or opinion or dguidance, please share with me.

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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.

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@gmanurse

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.

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@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!

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@marymv

I developed PMR within 36hrs of 2nd Pfizer Vaccine. I have been on Prednisone for 2 plus yrs. Difficult weaning since I got to 10 mg from 20mg. On 7mg with mild symptoms but now have bilateral achilles tendonitis. I know steroids can possibly cause achilles tend. I don't want to try Methyltrexate due to liver effects. I get ur point about not trying anything new. Hope it goes in remission soon. Best of luck to you!

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Thanks Mary! Best of healing to you too!

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@nativeoregirl

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

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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.

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