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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grammy82 | @grammy82 | May 14, 2023
In reply to @nativeoregirl "Just 10 days from reducing the prednisone 2.5 milligrams I have had a flare! Dr thinks..." + (show)
@nativeoregirl

Just 10 days from reducing the prednisone 2.5 milligrams I have had a flare! Dr thinks the PMR might has progressed to GCA. I had the worst headache in both temples. Now planning on doing the biopsy as I would never want to risk vision loss. I knew ahead of time to watch carefully for headaches. Although the Rheumatologist never warned me. Anyway just sharing with you all cause being and staying informed is key along with being your own advocate. I feel great going back up to 15 mg on the Prednisone. It’s such a great drug. I’m feeling on top of the world after having one of the worst headache of my life. Just a day ago it was scary! I will let you know of any new med’s she might put me on. Of course I am going to research very thoroughly. Hang in there we can make it if we try! Staying positive and still working really is what keeps me going, trying to look beyond this.

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I'm glad to hear they are planning the biopsy, the loss is permanent, as I had to experience. It is best to know for sure because we certainly have to be our own advocates. I'd never even heard of GCA until it was too late. My best to you. I've gone from 80mg per day three years ago to 3mg and Actemra and feel good. I paint and have managed very well. You deal with it and try to do the best you can. So glad you are educating yourself. I was told I had the flu for nine months.💞

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2 replies
nativeoregirl | @nativeoregirl | May 14, 2023
In reply to @grammy82 "I'm glad to hear they are planning the biopsy, the loss is permanent, as I had..." + (show)
@grammy82

I'm glad to hear they are planning the biopsy, the loss is permanent, as I had to experience. It is best to know for sure because we certainly have to be our own advocates. I'd never even heard of GCA until it was too late. My best to you. I've gone from 80mg per day three years ago to 3mg and Actemra and feel good. I paint and have managed very well. You deal with it and try to do the best you can. So glad you are educating yourself. I was told I had the flu for nine months.💞

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Thank you for sharing! What a lot to endure for you. Glad you’re on the right medication and doing much better. Thanks so much for sharing your experience.

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nativeoregirl | @nativeoregirl | May 15, 2023
In reply to @grammy82 "I'm glad to hear they are planning the biopsy, the loss is permanent, as I had..." + (show)
@grammy82

I'm glad to hear they are planning the biopsy, the loss is permanent, as I had to experience. It is best to know for sure because we certainly have to be our own advocates. I'd never even heard of GCA until it was too late. My best to you. I've gone from 80mg per day three years ago to 3mg and Actemra and feel good. I paint and have managed very well. You deal with it and try to do the best you can. So glad you are educating yourself. I was told I had the flu for nine months.💞

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Grammy82,

Thank you for your story and sharing. I am teaching myself watercolor when I can fit it in! Art is so therapeutic isn’t it? It puts you in a different space air another world. We all have something and I try to not dwell on it. I want to be more than my appointments or ailments . Definitely listen to what the Dr’s say but they are just so busy I make my own informed decisions. Sorry about your vision loss. Sounds like you rose above and are doing well. Big Hug

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1 reply
12345chris | @12345chris | May 15, 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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https://www.ninds.nih.gov/health-information/disorders/guillain-barre-syndrome#toc-what-is-guillain-barr-syndrome-
Worth teading asbit looks like PMR could bevGBS in disguise !

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grammy82 | @grammy82 | May 15, 2023
In reply to @nativeoregirl "Grammy82, Thank you for your story and sharing. I am teaching myself watercolor when I can..." + (show)
@nativeoregirl

Grammy82,

Thank you for your story and sharing. I am teaching myself watercolor when I can fit it in! Art is so therapeutic isn’t it? It puts you in a different space air another world. We all have something and I try to not dwell on it. I want to be more than my appointments or ailments . Definitely listen to what the Dr’s say but they are just so busy I make my own informed decisions. Sorry about your vision loss. Sounds like you rose above and are doing well. Big Hug

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Thanks for your note! When I paint, I get so involved I forget everything and have no idea how much time has passed. I agree with you that we have to have something we enjoy that takes us 'away' from what we are dealing with. I love watercolors too!! So many great videos on the computer. It is really a joy to work on small things; feels like I've accomplished a lot....and send them to friends. Really happy for you. Take good care!💞🎨

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nyxygirl | @nyxygirl | May 25, 2023
In reply to @southtexas "I appreciate this thread, since Kevzara is so new it is important for those of us..." + (show)
@southtexas

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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@southtexas I'm so interested in your comment -I am a 66 yr woman in Boston area- you have never been able to go lower than 5mg ? have you relapsed in the 4 year time period you describe ? I'm only 2 months into the PMR journey My doctors are at MGH , which was a site for the sarilumab trial . Luckily i found a rheum consult in 4 weeks after being seen by PCP, BUT, sadly today I feel absolutely worse after increased dose ; 20mg only 3days- new dose after rheumatologist consult, from 10mg+5mg (26days-prescribed by PCP). I've been musing that I feel i either picked a "good" time to get PMR ( HA ! or it picked me ) or maybe next year would be better, given this brand new approval for Kevzara in PMR. When i was spreading awareness in my family , turns out my cousin ( 10 yrs older and a male) had PMR 4 yrs ago !

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southtexas | @southtexas | May 25, 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

I’m sorry that you’re struggling, PMR affects everyone so differently. I’ve been maintaining on 4 mg of Pred relatively well. I decided to chicken out on the Kevzara due to fear of the side effects, I have Diverticulitis and have had skin cancer. Risk vs reward. I had fever, sore throat and felt terrible after first dose. As long as I can stay low dose on the Pred, which has no side effects so far, I’m going to stay with it and get bone density test every year or so. Some folks do well on Kevzara, I just didn’t want the added risk.

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sandiw77 | @sandiw77 | May 26, 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

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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3 replies
grammy82 | @grammy82 | May 26, 2023
In reply to @sandiw77 "Hi @sheralee, I just had my first Kevzara injection on Tuesday. So far, so good. No..." + (show)
@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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I'm happy to hear you have started the treatment with Kevzara and hope to hear of your improvement. I take Actemra with no side effects, and it made a difference in the way I felt, as well as finally lowering my prednisone. Be patient; it takes time and is worth waiting for. My best.💞

REPLY
sandiw77 | @sandiw77 | May 26, 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

That is great to hear. I’m so ready to kick my pain to the curb!

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