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.

@JustinMcClanahan

Hi @mrovka49, welcome to Mayo Clinic Connect. I moved your discussion and combined it with an existing discussion titled : PMR Treatment with Kevzara, https://connect.mayoclinic.org/discussion/pmr-treatment-w-kevzara/. Here you can meet members like @gmanurse, @ozblossom, and @paulagcl who have discussed their experience with KEVZARA.

@mrovka49, how are you doing while weaning from Prednisone while you wait to start a new medication?

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My doctor still has me on prednisone for almost 1 yr. down to 10 mg but the pains reoccur from time to time. He was reluctant to put me on Kevzara, will attempt to talk him into this treatment and send more reports.

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@mrovka49

Has anyone with PMR using prednisone tried KEVZARA with any positive or negative results?

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I have been on prednisone for 18+ month, with several unsuccessful attempts at weaning completely off. I am on 3-4mg daily, have had 5 doses of Kevzara at this date, but so far not seeing any benefit. I am experiencing more pain again and returning to 5mg pred.

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@paulagcl

This is hopeful! I am having some pain again now -- I didn't realize that there are ups and downs with inflammation so I am trying to stay calm. A headache.
I am grateful for this support group -- thanks to all of you. So here is some humor!!!! I am trying to follow the anti-inflammation diet, no red meat. So I just woke up having dreamt that I went to restaurant after restaurant ordering a steak! Thick, so a filet mignon. Medium rare. Perfectly grilled. One of the places was named the same as one my family went to when I was growing up in Miami -- the Embers. Now I am awake, craving a steak.

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@paulagcl and others -- I have (finally) found a second person i know who has PMR! His experience, however, is unlike my cousin's. My cousin tapered off successfully in about 1 year with no relapse - his PMR occurred about 10 yrs ago though.
For my other friend, the onset was 3+ years ago , before the pandemic, and he is unable to taper below 7.5 mg. I was searching through our CONNECT conversations and found helpful info to send to him - including that patients are now on KEVZARA! So Paula - how are you feeling ?? Good I hope : )

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@nyxygirl

@paulagcl and others -- I have (finally) found a second person i know who has PMR! His experience, however, is unlike my cousin's. My cousin tapered off successfully in about 1 year with no relapse - his PMR occurred about 10 yrs ago though.
For my other friend, the onset was 3+ years ago , before the pandemic, and he is unable to taper below 7.5 mg. I was searching through our CONNECT conversations and found helpful info to send to him - including that patients are now on KEVZARA! So Paula - how are you feeling ?? Good I hope : )

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I'm feeling good! I am slowing tapering down prednisone and the hope is that Kevzara will take over completely.

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@mrovka49

Has anyone with PMR using prednisone tried KEVZARA with any positive or negative results?

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I have been up and down from 8- 15 mgs of prednisone for about one and a half years for PMR and have now had 5 doses of Kevzara and have been able to taper down so far to 5 mgs. Overall, I do feel better with less pain. It is not perfect but a definite improvement so far. I have a great rheumatologist who has really worked with me on this.

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@ozblossom

After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved for PMR) injections. Would appreciate anyone’s experience with this drug and cost after insurance (I have Medicare and supplemental) if you would be willing to share. Many thanks.

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Ironically I was going to post and ask about this medication. I ran into my doc tonight. He is calling my pharmacy to start my Kevzara asap. He saw me tonight where he stated that I've gained weight and I'm starting the moon face. He said that because of my Type 2 diabetes (well controlled) he wants me off the steroids. I'm still having pain, and he wants to bump me up to 25mg tomorrow then start taper down process next week. I've only been on meds about a month, and I'm newly diagnosed (Aug 16th). I haven't been able to work since July, so I'm ready to try to shake this to get back as normal as possible. However reading in this site, I don't think that's happening to quickly.

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@kberlyhouse

I have been on prednisone for 18+ month, with several unsuccessful attempts at weaning completely off. I am on 3-4mg daily, have had 5 doses of Kevzara at this date, but so far not seeing any benefit. I am experiencing more pain again and returning to 5mg pred.

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I read somewhere that Kevzara only has about a 25% success rate.

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@edinnola

Ironically I was going to post and ask about this medication. I ran into my doc tonight. He is calling my pharmacy to start my Kevzara asap. He saw me tonight where he stated that I've gained weight and I'm starting the moon face. He said that because of my Type 2 diabetes (well controlled) he wants me off the steroids. I'm still having pain, and he wants to bump me up to 25mg tomorrow then start taper down process next week. I've only been on meds about a month, and I'm newly diagnosed (Aug 16th). I haven't been able to work since July, so I'm ready to try to shake this to get back as normal as possible. However reading in this site, I don't think that's happening to quickly.

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Currently at 5 mg and hoping to continue taper. My symptoms have improved and hopeful this is remission. On first look at Kevzara my main concerns were side effects and cost, both which should be weighed with the benefits of improvement of PMR symptoms. Best wishes to you

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@marid57

I read somewhere that Kevzara only has about a 25% success rate.

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I don't know all the details but it was 28% of people who were not doing particularly well with tapering off prednisone.

"The approval of sarilumab for PMR was based on findings from the phase 3 SAPHYR clinical trial for patients with steroid-resistant active PMR who flared on ≥7.5 mg/day prednisone or equivalent during taper."

https://www.ajmc.com/view/sarilumab-indication-expanded-to-include-polymyalgia-rheumatica
No medication comes with a guarantee that it will work 100% for everyone. There is also no guarantee that people won't have side effects on Kevzara. The nice thing is Kevzara can be stopped if it doesn't work or if people have side effects.

Prednisone is very difficult to stop even when people experience side effects. It might be good to have an alternative to prednisone.

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@ozblossom

After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved for PMR) injections. Would appreciate anyone’s experience with this drug and cost after insurance (I have Medicare and supplemental) if you would be willing to share. Many thanks.

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I was diagnosed with PMR last November and have been treated with Prednisone since then. Was doing well and was able to go from taking 20 mg. To taking 5 mg. When I had a return of terrible morning pain and was barely able to walk. My doctor recommended Kevzara and I have done three injections. So far the results are amazing. I am covered by Medicare and Cigna as a secondary insurance and am pleased to tell you that I have a copay of $25. I was astonished when I learned what this medication costs without insurance and am so very grateful to have the opportunity to take Kevzara.

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