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?

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

DadCue | @dadcue | Jul 9, 2023
In reply to @nyxygirl "WOW ! I told @paulagcl Paula in a private message that she was the PMR patient..." + (show)
@nyxygirl

WOW !
I told @paulagcl Paula in a private message that she was the PMR patient of the future ! NO fooling around with Prednisone tapering -
ha ha your reply about the nurse is funny ! i think i would be squeamish, too ,about learning to inject myself ! Be Brave - and best of luck !!

At the European Meeting of Rheumatology this past May - the follow up to the Saphyr trial was presented - i will attach the abstract below .
The American College of Rheumaotlogy Meeting will be in SanDiego in Nov !

SUSTAINED REMISSION FROM WEEKS 16 TO 52 AND WEEKS 24 TO 52 IN PATIENTS TREATED WITH SARILUMAB: POST-HOC ANALYSIS OF SAPHYR TRIAL IN PATIENTS WITH POLYMYALGIA RHEUMATICA

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One would hope PMR patients of the future will have better options than prednisone. I took prednisone for more than 12 years for PMR and never could taper off. I read stuff about prednisone being the only option for PMR and GCA. I'm just happy that my rheumatologist kept trying to find a way for me to get me off prednisone.

The solution for me at least was Actemra which is similar to Kevzara. I was able to taper off prednisone in a matter of months as compared to years. It made me wonder why Actemra wasn't tried sooner. As it it was, my rheumatologist said getting Actemra approved for me to treat PMR was no easy matter.

I'm a nurse who stuck needles in other people all the time. I was squeamish to about injecting myself. I asked me wife to do it for me She was a nurse as well.

I have now opted for doing monthly infusions in part because I was getting tired of doing injections. I don't mind someone else starting the IV for the infusion. My rhematologist is my hero and was happy to order the infusions for me since it works so well for me.

My rheumatologist was reluctant to order Actemra after he sought approval for it. He talked about doing monthly infusions first, then switched it to weekly injections. Ultimately, he decided to go with injections every two weeks to "play it safe." It made me wonder what I was getting myself into. Now that I'm off prednisone, I'm very pleased with Actemra.

I wouldn't mind stopping Actemra just to see if remission is sustainable. So far, that hasn't been the case. When I did stop Actemra once, the pain gradually returned but it was more subtle and only after a long time. My rheumatologist said that was consistent with biologics that are given for other autoimmune conditions.

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mimig1234 | @mimig1234 | Jul 10, 2023
In reply to @ozblossom "After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved..." + (show)
@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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U

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bohobama | @bohobama | Jul 12, 2023
In reply to @dadcue "I think it would be a wise to try Kevzara. I only have experience with a..." + (show)
@dadcue

I think it would be a wise to try Kevzara. I only have experience with a similar medication called Actemra which works on the same inflammation pathway. Both of these medications inhibit the pro inflammatory mechanism of the cytokine IL-6.

Cytokines are complicated as the following link suggests.

https://my.clevelandclinic.org/health/body/24585-cytokines#:~:text=Cytokines%20are%20essential%20to%20having,can%20be%20harmful%20without%20treatment.

Never mind all the details because I don't understand it either.

In any case, Actemra worked for me but the research to get Actemra approved to treat PMR hasn't been done. The research has been done for Kevzara and that is why it has been FDA approved for PMR but not GCA.

Actemra is FDA approved for GCA but not PMR. There is now a biologic for either PMR or GCA so take your pick.

Something other than long term prednisone for PMR and GCA is a huge step forward! This is especially true for someone who doesn't tolerate the long term side effects of prednisone.

I would think there is a place for biologics to treat PMR and GCA. As I understand it, both Actemra and Kevzara don't stop the production of IL-6. This cytokine has certain benefits in the immune system. Both Kevzara and Actemra seem to stop the pro-inflammatory effects of IL-6. This inflammation mechanism has been implicated in PMR and GCA and were used in the past for other autoimmune disorders.

Credit to whoever found the following link but I think it is excellent.

https://www.pmrandil6.com/il-6-and-pmr/

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Thanks, I just saved this link and watched video featuring a rheumatologist.

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bohobama | @bohobama | Jul 13, 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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Sadly, my blood sugar has climbed considerably since beginning Prednisone, but I’m about to be 71 and the newest ADA guidelines say that an a1c of 8 is fine for a senior. I don’t think mine will be that high anyhow.

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redboat | @redboat | Jul 14, 2023
In reply to @southtexas "Has anyone been on Kevzara for more than a couple of months? Would really be helpful..." + (show)
@southtexas

Has anyone been on Kevzara for more than a couple of months? Would really be helpful to know how it worked for you. I took my first dose but still am apprehensive.

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How is it going with Kevzara?

I am self-injecting weekly with Actemra, which is also a "biologic" with a similar effect - it also an IL-6 inhibitor. Actemra has been very effective in reducing my PMR/GCA symptoms as I taper off Prednisone (now at 7.5 mg/day, down from 60 mg/day, and slowly going lower). The only side effect I have noticed is a slight increase in my ALT liver score, but it is still well within normal range at 20 U/L . Kaiser says anything below 47 U/L is normal. My past scores have been around 13 U/L when I was completely healthy.

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1 reply
sandiw77 | @sandiw77 | Jul 15, 2023
In reply to @redboat "How is it going with Kevzara? I am self-injecting weekly with Actemra, which is also a..." + (show)
@redboat

How is it going with Kevzara?

I am self-injecting weekly with Actemra, which is also a "biologic" with a similar effect - it also an IL-6 inhibitor. Actemra has been very effective in reducing my PMR/GCA symptoms as I taper off Prednisone (now at 7.5 mg/day, down from 60 mg/day, and slowly going lower). The only side effect I have noticed is a slight increase in my ALT liver score, but it is still well within normal range at 20 U/L . Kaiser says anything below 47 U/L is normal. My past scores have been around 13 U/L when I was completely healthy.

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I’m glad you asked and hopefully we will hear good news from the others. I have been paused due to benign hepatic cysts and some new right side abdominal pain. Kevzara can apparently cause them to enlarge—which is dangerous. I hope my sonogram next week will let my endocrinologist know whether or not it is safe to return to Kevzara or if I will have to be taken off the drug. My rheumatologist tells me that if I can’t continue with it we can’t try Actemra either since it is likely to have the same effect. Don’t really have another option so I would would be a very disappointed.

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bohobama | @bohobama | Jul 16, 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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While I’m always happy to hear of new meds that might help my T2 diabetes and now PMR, I think I’d rather sit this one out on Kevzara until we see results and side effects.

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gmanurse | @gmanurse | Jul 17, 2023
In reply to @ozblossom "After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved..." + (show)
@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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Been on 20 mg Prednisone sine Jan
Refused methotrexate and did not do well with Leflunomide
Have had 4 doses of Kevzara & down to 15.5 prednisone. No side affects and feeling “ a little “ better
SE from predisone most challenging. Medicare advantage paid for two doses then went into coverage gap. Approved for patient assistance from Kevzara

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mrovka49 | @mrovka49 | Sep 20, 2023
In reply to @ozblossom "After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved..." + (show)
@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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Has anyone with PMR using prednisone tried KEVZARA with any positive or negative results?

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2 replies
Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Sep 20, 2023
In reply to @ozblossom "After 15 months of prednisone/Medrol tapers I have failed both trials. Rheumatology recommending Kevzara (FDA approved..." + (show)
@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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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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