1. < Polymyalgia Rheumatica (PMR)

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?

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michwest | @michwest | Oct 15, 2022
In reply to @hfoster "Thank you. Same to you. I remember how awful it was in the first few weeks..." + (show)
@hfoster

Thank you. Same to you. I remember how awful it was in the first few weeks and months. It sounds like you've gotten to a good Dr. early. What a difference that makes. It took me 8 months and lots of misdiagnoses along with 6 doctors before I started treatment. As you are researching, check out this site: https://healthunlocked.com/pmrgcauk
It has been really helpful. Also, there is a book on PMR that has a good summary of research and experiences: Kate Gilbert's Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. Will be interested to hear how your PET scan goes. That was never offered to me but wondering if I should get it to confirm my diagnosis and ensure I'm getting the proper treatment. It does get so much better once you start Prednisone. Hope you get some relief soon.

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Thanks @hfoster - yes I’m thankful to have been able to get into a Rheumatologist soon after I saw my gp. She happened to be a friend of a friend and squeezed me in. I tried Physio’s first for weeks thinking it was sports related somehow until the pain continues to get worse and travel to my neck and shoulders. It looks like I may be waiting for a few weeks for the PET scan so can’t go on prednisone until I have had that done. I’ll let you know how that goes. It’s expensive but my specialist said if it was her she would certainly rule everything else out first. Meanwhile the pain progresses. I’m trying to be thankful it’s not something more sinister that I have been diagnosed with. I’ve realised you have to be your own health advocate and research and get as much info as you can and push the drs. I had one gp say just get a steroid injection and that should fix your pain. ‘It’s not uncommon to suddenly have that kind of pain.’ How wrong she was. I hope you can figure it out and get the answers you need.

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sheralee | @sheralee | May 10, 2023

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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27 replies
southtexas | @southtexas | May 11, 2023
In reply to @sheralee "Dear Friends- My rheumatologist wants to start me on Kevzara & wean down off prednisone. This..." + (show)
@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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Same plan for me, I injected my first dose yesterday, I’ve been on around 5 ml of Pred for over 4 years. I did have a slight reaction to the Kevzara, felt ache and had 101 fever for about 3 hours, today I feel normal. That’s all I know for now.

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pointer134 | @pointer134 | May 11, 2023
In reply to @sheralee "Dear Friends- My rheumatologist wants to start me on Kevzara & wean down off prednisone. This..." + (show)
@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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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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3 replies
southtexas | @southtexas | May 11, 2023
In reply to @pointer134 "Started Kevzara200 last Sunday.Get every two weeks. For now 10 Prednisone and 15 Methotrexate. Will start..." + (show)
@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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At what week do you draw blood?

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pointer134 | @pointer134 | May 11, 2023
In reply to @sheralee "Dear Friends- My rheumatologist wants to start me on Kevzara & wean down off prednisone. This..." + (show)
@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.

Jump to this post

Lab after 8 weeks

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sandiw77 | @sandiw77 | May 11, 2023
In reply to @sheralee "Dear Friends- My rheumatologist wants to start me on Kevzara & wean down off prednisone. This..." + (show)
@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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I’m also scheduled to start Kevzara next week. Praying that it will help me to reduce my prednisone (currently ant 17.5 and holding). Blessings!

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1 reply
southtexas | @southtexas | May 11, 2023
In reply to @sheralee "Dear Friends- My rheumatologist wants to start me on Kevzara & wean down off prednisone. This..." + (show)
@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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I appreciate this thread, since Kevzara is so new it is important for those of us on it to share our experiences.

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1 reply
nativeoregirl | @nativeoregirl | May 11, 2023
In reply to @sheralee "Dear Friends- My rheumatologist wants to start me on Kevzara & wean down off prednisone. This..." + (show)
@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.

Jump to this post

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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5 replies
marymv | @marymv | May 11, 2023
In reply to @nativeoregirl "Personally, I wouldn't take the chance on any new drug due to my PMR being a..." + (show)
@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 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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