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.

@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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Hang in there, PMR can be difficult but treatment with Kevzara has been very helpful for me after dealing with Prednisone since last Fall. I'm now waking up in the morning with very little pain after only three doses of Kevzara. I feel very lucky.

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@faerifrann

Hang in there, PMR can be difficult but treatment with Kevzara has been very helpful for me after dealing with Prednisone since last Fall. I'm now waking up in the morning with very little pain after only three doses of Kevzara. I feel very lucky.

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I just had my telephone consult with my "specialty pharmacist". She asked if I had any questions, and we got everything handled.
These past 3 days have been extremely pleasant for me. I basically had no pain throughout the day, but I am still not pre-PMR. Today was my first day of Physical Therapy and ROM exercises at home.
I'll start my taper down when the injection gets in to my pharmacy. I'm on 20mg prednisone still, and I'm about to chain up my refrigerator. I'll see how I feel in the morning!
Thank you everyone, and I appreciate your time.
I have moved up to acceptance stage!

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@faerifrann

Hang in there, PMR can be difficult but treatment with Kevzara has been very helpful for me after dealing with Prednisone since last Fall. I'm now waking up in the morning with very little pain after only three doses of Kevzara. I feel very lucky.

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How long do you have to take it ? How do you know when you can stop?

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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 just took my first dose of Kevzara after taking methotextrate and having horrible side effects. Hopefully it works but day 3 after taking I am experiencing some painful side effects but hopefully only temporary. I have and still am on prednisone can't seem to get below 15 MG.

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@faerifrann

Hang in there, PMR can be difficult but treatment with Kevzara has been very helpful for me after dealing with Prednisone since last Fall. I'm now waking up in the morning with very little pain after only three doses of Kevzara. I feel very lucky.

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After only three injections is exceptional.

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@gjc111

I just took my first dose of Kevzara after taking methotextrate and having horrible side effects. Hopefully it works but day 3 after taking I am experiencing some painful side effects but hopefully only temporary. I have and still am on prednisone can't seem to get below 15 MG.

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Good to hear that Kevzara is working for many of you. I am still on 15 mg Predisone with Kevsara in the wings if my SED rate isn’t in a normal range at next blood test in 10 days.
I wanted to share that I switched my dose of Prednisone to the night as one of the previous posts suggested and also was pleasantly surprised that my morning symptoms were improved dramatically. I did take it with Tylenol PM so my sleep wouldn’t be disturbed. Two nights in a row and I feel so much better. I’m not pain free but feel like I can resume most of my normal activities. Plan to taper to 12.5 in 10 days. Fingers crossed.

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@southtexas

After only three injections is exceptional.

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I'm on Actemra which works in a similar way as Kevzara. Both Actemra and Kevzara are IL-6 receptor blockers. My rheumatolgist said it takes about three months to feel the "full effects" of a biologic IF it is going to work. If a biologic doesn't work after three months then it might be time to consider trying something else.

I'm grateful the Actemra worked well for me. After being on prednisone for 12 years, I'm glad Actemra enabled me to taper off prednisone. It took me a total of 7 months to taper off the first time. I needed to go back on prednisone again for awhile. My Actemra dose was increased and I was able to taper off prednisone a second time. I have now been off prednisone for almost 4 years.

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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 anticipate beginning Kevzara next month after being off prednisone for 5 weeks. I am dealing with the classic symptoms of stiffness, especially in my hands and wrists and fatigue For a really clear primer on Kevzara go to Drugs.com. Article is entitled Kevzara, 7 things you should know. It was written in March 2023

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@ozblossom

Thank you very much for your comments and the link. It has been a long process and I do want to be well educated of pros/cons before starting treatment. Your help is much appreciated.

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I have had 8 injections of Kevzara. To date I have not had any improvements. I’ve previously had 2 courses of prednisone, tapered off and had to get back on due to severe flare. I am in pain all day and into the night. I take ibuprofen 800mg 3x daily. That gives me enough relief to walk around the house and get very limited chores done. To me I have a severe case of PMR, for 5 years I have been unable to do any of the things I once enjoyed. I was an active exerciser, swimmer, and on the go person. It has stopped my life as I knew it.

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@joybannister

How long do you have to take it ? How do you know when you can stop?

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I was told a year by my doc. Fingers crossed.

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