Kevzara (sarilumab) to treat PMR

Hola a mi me diagnosticaron con PMR y osteoartritis hace cuatro años me mandaron prednisona y me alivio despues la prednisona le afecto el estomago y me dio cataratas me mandaron las inyecciones de actemra tuve ese tratamiento casi un año como no me aliviaba los dolores deje de inyectarme ahora mi reumatologo me mando kevzara llevo 9 inyecciones que me he puesto y no siento nada de alivio es horrible estos dolores vamos a ver que se podra hacer

@nativeoregirl
Hello! I know what you mean about us suffering because of the “opioid crisis”!!
Doctors have already decreased my dose by one pill (from 4 to 3 of Percocet). I used to take hydrocodone, , but it was not working as well for me when I broke my kneecap and had to have surgery!
I already had PMR, so when the pain from my surgery stopped I still continued with the Percocet—-that’s when doctors were starting to force everyone off opioids
My body has adjusted to the lower dose. Sometimes I only take a half pill with a Tylenol 500 rapid release gelcap and this gives me some relief . I’m also under the care of pain management doctors and they are the ones who approved the half pill (as long as you are not taking a extended , long release tablet) my tablet is short acting , half a pill will last 4 to 6 hours.

I was diagnosed with PMR Summer of 2020. I’ve tried methotrexate and was unable to taper off steroids. I then went back to Prednisone and am able to get to 4mg, and has very little discomfort. When Kevzara was approved for PMR, my Rheumatologist wanted me to try it. I was approved for it, but the side effects scared me, so I decided not to move forward. For the next year, and slowly tapered down to 2 mg, but I’m in a lot of pain in my upper body. My clavicle is involved, which has never been in the past, and my elbows and upper arms are very painful at night. I also was diagnosed with Occipital Neuralgia, before the PMR set in. I later found out, that they are seen together frequently. I’m a 63 year old female, who has worked out for 33 years and I’m still pushing through. My upper body isn’t happy doing weights, but I’ve adjusted my routine and it’s very doable. I was told working out will make my symptoms worse, but it’s what keeps me mentally healthy.
Recently I decided maybe to look at Kevzara again. But when I looked at the rate of success, it’s 28%…that’s not good! Knowing that my experience on Methotrexate wasn’t good, I’m now not going to do it. The medical risks on this drug aren’t good either. I just went back up to 5mg of prednisone. It’s only been 2 days, but I am seeing improvement in my PMR.
Has anyone had Kevzara allow them to get off prednisone? I know that, if you can get off the steroids, while on Kevzara…you need to stay on Kevzara for up to a year after potentially. That’s even more scary to me, especially as an older person.

@sharonanng I was diagnosed in June of 2021 and it took 3 months to get my PMR diagnosis . I had so much blood work done, but no markers for PMR or RA, so my Rheumatologist started me on 15mg of Prednisone. It took 10 days to take the pain away, ive been on Prednisone since. She later told me, there had been a huge increase in PMR, since covid and the vaccine. She said there was speculation at the time, that there was a link. I was told to not get anymore Covid vaccines at that point. I’ve only had Covid once and it was 2.5 years after Covid began, so the vaccine could be the culprit.

@lori62yb

Good Morning, Kevzara, really only 28% success rate, that seems so scary. How did you find that rate out. Thanks, Ellen D.

@lori62yb
I started kevzara at 5 mg of prednisone 3 months ago. I have tapered to 1 mg today since starting kevzara. So far no pain issues and will be on 1 mg for 15 days then prednisone free, hopefully! I will have been on prednisone for 6 months in totality.
I am will willing to take a chance on Kevzara after watching my mother remain on prednisone for PMR for the last 15 years of her life. She had wound issues and had osteoporosis. At the time there was no other treatment.
I do not want to live my last few years dependent on prednisone. Anyone that is a candidate for an alternative treatment needs to think about it seriously. It’s my only chance to hope for long term freedom from PMR.

@elleninz I did a search on Kevzara and their rate off success, in PMR remission.

@lori62yb what did you find out?

@elleninz

That 28% success rate depends on how you define success. The people enrolled in the study trial were said to have at least one PMR relapse during a Prednisone taper. The patients enrolled in the study were the ones who failed to achieve remission with the standard treatment with Prednisone. One could say that "Prednisone failed" these patients. Improvements were highest in patients with the most severe disease.

People are inclined to say that taking Prednisone is about "quality of life." My quality of life improved immensely when a biologic allowed me to taper off Prednisone.
https://pubmed.ncbi.nlm.nih.gov/40544861/
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The following link summarizes the actual SAPHYR study.
https://pubmed.ncbi.nlm.nih.gov/37792612/study.
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Patients who didn't have "success" with Kevzara needed substantially less Prednisone to control PMR. That in and of itself is deemed to be a success by medical professionals.

Hi, I have had 3 injections of Kevzara thus far. My understanding is that it typically takes about 3 months to feel a difference. I am hopeful. In my opinion, a biologic is far better than Prednisone in terms of side effects and quality of life. I have read about many positive outcomes with Kevzara, so we will see....