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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southtexas | @southtexas | May 12, 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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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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1 reply
nativeoregirl | @nativeoregirl | May 12, 2023
In reply to @marymv "I developed PMR within 36hrs of 2nd Pfizer Vaccine. I have been on Prednisone for 2..." + (show)
@marymv

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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Yes, Methlttexate does have so many risks. They want me to take it instead of my pain medication and sorry I am not willing to give up what works just because of the Opiod Crises. Many people do well on Hydrocodone and I am one who does have any issues except DR’s all but for forcing me off. Doctors are trying to force patients off something onto something in my opinion could be more dangerous. No one can dictate you need to suffer. I’m my best advocate for sure.

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2 replies
redboat | @redboat | May 12, 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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My rheumatologist seemed to feel that Kevzara and Actemra were similar and that it did not matter which was used as I taper off Prednisone. Both suppress the IL-6 immune system pathway. I'm on Actemra only because my medical provider gets it more cheaply, so they prefer its use. My guess is that the Kevzara side effects are far less than Prednisone; Kevzara is highly targeted and is not a hormone, so likely tolerated far better than Prednisone.

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1 reply
grammy82 | @grammy82 | May 12, 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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I hope this might help....I've been on Tocilizumab, Actemra, for three years for GCA. It is also an Il-6 inhibitor. I've experienced no side effects despite some concerns when I started. My rheumatologist says it is the real 'workhorse' in keeping me from a flare.
I'm good with that~!💞

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12345chris | @12345chris | May 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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Agree 100% and this drug is untested andb like playing Russian Rouletee with your body

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2 replies
nativeoregirl | @nativeoregirl | May 13, 2023
In reply to @12345chris "Agree 100% and this drug is untested andb like playing Russian Rouletee with your body" + (show)
@12345chris

Agree 100% and this drug is untested andb like playing Russian Rouletee with your body

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Yes, a great way to state this fact! Hang in there.

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nativeoregirl | @nativeoregirl | May 13, 2023
In reply to @12345chris "Agree 100% and this drug is untested andb like playing Russian Rouletee with your body" + (show)
@12345chris

Agree 100% and this drug is untested andb like playing Russian Rouletee with your body

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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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2 replies
nativeoregirl | @nativeoregirl | May 13, 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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By the way I’m up here in the Pacific Northwest, Oregon Westside and suburbs!

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12345chris | @12345chris | May 13, 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 am so sorry to here your real life experience its terrible. You have all i thoughts and strengh please get better.
The doctors are acting weird in the UK whete PMR and CGA cases have gone crazy as well as other nerve inflamation.
Its really scary and the doctors seem to swerve the question when asked.

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1 reply
nativeoregirl | @nativeoregirl | May 13, 2023
In reply to @12345chris "I am so sorry to here your real life experience its terrible. You have all i..." + (show)
@12345chris

I am so sorry to here your real life experience its terrible. You have all i thoughts and strengh please get better.
The doctors are acting weird in the UK whete PMR and CGA cases have gone crazy as well as other nerve inflamation.
Its really scary and the doctors seem to swerve the question when asked.

Jump to this post

It’s not all that bad, always could be worse. Right? Doctors and staff
still recovering from aftermath of Covid and burnout. They sure don’t seem
as knowledgeable or professional as they were 10-15 years ago.

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