← Return to Starting treatment with Kevzara: My journey

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@kmb181

Hi~
I am 55, and I have been dealing with PMR for about 9 years. I also have neck, and spine issues.
I have been on, and off Medrol, over the past 9 years. Every time I get off of Medrol, my inflammatory markers go back up with in 2-3 months.
Last year I tried injectable Methotrexate for about 6 months, but could not tolerate the side effects. It did however keep my markers down. But, I was also on Medrol while taking the injections.
I got Covid for the first time, right before Christmas last year (2023), and I have been battling a high CRP, and Sediment rate since. I just finished a 2 month Medrol taper, and my inflammatory markers are still high.
My Rheumatologist wants me to start on Kevzara. I have a lot of concerns, as my body is worn out, I do not tolerate meds well, and I have fatty liver from the long term Medrol use. I am also the person that if I get sick, I always get it bad. I feel like this could be opening up a new set of problems. But, I am most likely a PMR lifer, and I cannot stay on Medrol for ever. Especially with my neck, and spine issues. I also tore my meniscus in 3 places. Now I need knee surgery on my right knee, and left knee is right behind it. 🙄
Has anyone been on Kevzara for over a year, and had good results? What were your side effects?
Thank you,
Kathy 😊

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Replies to "Hi~ I am 55, and I have been dealing with PMR for about 9 years. I..."

I am on prednisone 11 mg and have had PMR for 4 years

Hello @kmb181 - I moved your discussion and combined it with an existing discussion titled, "Starting treatment with Kevzara: My journey" - https://connect.mayoclinic.org/discussion/first-dose-of-kevzara/.

@edinnola, @wilmingtonemperor, and @paulagcl talked about their experiences with Kevzara and may be able to share some of their experiences with you as you weigh this new prescription decision.

I don't have any experience with Kevzara but I have been on Actemra (tocilizumab) since January 1, 2019. Kevzara and Actemra are in the same classification of medications --- both are interleukin 6 (IL-6) inhibitors. They both have similar safety profiles.

I had excellent results from Actemra. I considered myself a PMR lifer of more than 12 years. I was a relatively young 52 year old when I was diagnosed with PMR. I was on moderately high doses of prednisone for nearly 13 years until Actemra allowed me to taper off prednisone. I might have mild lab abnormalities from Actemra but no serious side effects. My side effects from prednisone were much worse than any side effect I have experienced from Actemra.

Some people would say "better the devil you know than a risky biologic you don't know." For me prednisone was the devil while Actemra has been a blessing from heaven. My rheumatologist says Kevzara might be another option for me if Actemra ever stops working.

I don't consider myself a PMR lifer anymore. However, my treatment for PMR continues with Actemra instead of Prednisone. I do a monthly infusion of Actemra currently but I have done weekly injections in the past too.

How did your visit to Duke go? I read about that in one of your earlier post. I’m currently seeing Duke neurology with upcoming appointment with Rheumatology. My aunt was treated there for Lupus with a mixed opinion.