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.

@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 @pointer134 @sandiw77 @kberlyhouse and others on Kevzara! Hope you are well !! I found a route to more informative pathophysiology for PMR by looking at titles for GCA! Assuming that because of the more serious nature (vision loss) of GCA, there is/has been A LOT of research there ! And the approval of tocilizumab.

So picture that drug blocking the IL-6, which is (part) of the cause of the inflammation !
And for the rest of us just on Prednisone only -
"Steroids inhibit T-cell activation, proliferation and polarization into Th17 cells. In
addition, they trigger a decrease in the level of serum IL-6."

This article has easy to read Abstract and a nifty figure (Fig 3) showing molecular pathways .
New Insights into the Pathogenesis of Giant Cell Arteritis:
Mechanisms Involved in Maintaining Vascular Inflammation
Hélène Greigert et al. J. Clin. Med. 2022, 11,
2905.

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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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Thanks so much for sharing this. Reading the article now! ❤️

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@nyxygirl

@southtexas @pointer134 @sandiw77 @kberlyhouse and others on Kevzara! Hope you are well !! I found a route to more informative pathophysiology for PMR by looking at titles for GCA! Assuming that because of the more serious nature (vision loss) of GCA, there is/has been A LOT of research there ! And the approval of tocilizumab.

So picture that drug blocking the IL-6, which is (part) of the cause of the inflammation !
And for the rest of us just on Prednisone only -
"Steroids inhibit T-cell activation, proliferation and polarization into Th17 cells. In
addition, they trigger a decrease in the level of serum IL-6."

This article has easy to read Abstract and a nifty figure (Fig 3) showing molecular pathways .
New Insights into the Pathogenesis of Giant Cell Arteritis:
Mechanisms Involved in Maintaining Vascular Inflammation
Hélène Greigert et al. J. Clin. Med. 2022, 11,
2905.

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Can you send link to this article ?

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@gmanurse

Can you send link to this article ?

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Here's the link to article in @nyxygirl's post:

New Insights into the Pathogenesis of Giant Cell Arteritis: Mechanisms Involved in Maintaining Vascular Inflammation: https://pubmed.ncbi.nlm.nih.gov/35629030/

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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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Hi @sheralee, I have just started taking Kevzara and really don’t have any thoughts yet. I just took my 2nd dose this morning. It’s only administered once every 2 weeks so I’m just hopeful that side effect free change is coming! 😂🤣 Will let you know when I have a true observation. 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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Thanks everyone. I start Kevzara on 6/23/23. Also look forward to leaving the severe side effects from Predisone I experienced behind. Sending good wishes to everyone.

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@sandiw77

Hi @sheralee, I have just started taking Kevzara and really don’t have any thoughts yet. I just took my 2nd dose this morning. It’s only administered once every 2 weeks so I’m just hopeful that side effect free change is coming! 😂🤣 Will let you know when I have a true observation. Blessings!
Sandi

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I hope you have good luck with Kevzara. I'm on Actemra which my rheumatologist wanted me to try 4 years ago to treat refractory PMR. Actemra works well for me. I look forward to hearing about the experiences other people have with Kevzara.

My experience with Actemra has been positive. I was able to taper off prednisone in less than a year after Actemra was started. I might have some minor sided effects from Actemra but nothing compared to all of the problems prednisone was causing. Prednisone relieves pain faster but in the long term, my rheumatologist thinks I will do better on Actemra.

Kevzara and Actemra target the same IL-6 inflammation pathway that is implicated in both PMR and GCA. Kevzara is FDA approved for PMR. Actemra is FDA approved for GCA. To the extent that PMR and GCA are "associated" I think either biologic might work for both conditions.

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@dadcue

I hope you have good luck with Kevzara. I'm on Actemra which my rheumatologist wanted me to try 4 years ago to treat refractory PMR. Actemra works well for me. I look forward to hearing about the experiences other people have with Kevzara.

My experience with Actemra has been positive. I was able to taper off prednisone in less than a year after Actemra was started. I might have some minor sided effects from Actemra but nothing compared to all of the problems prednisone was causing. Prednisone relieves pain faster but in the long term, my rheumatologist thinks I will do better on Actemra.

Kevzara and Actemra target the same IL-6 inflammation pathway that is implicated in both PMR and GCA. Kevzara is FDA approved for PMR. Actemra is FDA approved for GCA. To the extent that PMR and GCA are "associated" I think either biologic might work for both conditions.

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My doctor made the Actemra Kevzara connection for me so I’m glad Kevzara is in good company. @sharonmc18 glad to hear that you are joining the “K” club. Hope it goes well for you too!
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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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.

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@lauras18

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.

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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.

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