What was your experience on Kevzara?

Posted by healthy56 @healthy56, Sep 14, 2024

I am curious about other’s experience with KEVZARA. I am currently taking 11 mg of Prednisone, down from 60 mg in April 2024. I am continuing to experience pain and stiffness daily, especially in the late evening and the morning. I am also fatigued most days. I am on an anti-inflammatory diet, walk daily and do a little restorative yoga. My Rheumatologist suggests going back up to 12.5 mg but I do not think that will be helpful as it will only lengthen the time I am on a drug that appears to not be helpful. She has suggested KEVZARA and we are now waiting on approval from my insurance company. My questions are: should I wait a bit and stay at 11 mg to see if anything changes (I have been on this dose for 4 weeks) before I start KEVZARA? Is it too soon in my treatment to start a biologic? It seems as tho my autoimmune system is not responding to the Prednisone or maybe I need more patience? My doctor was vague on these questions. Thank you in advance, I really appreciate this forum!

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

Profile picture for sharonmc18 @sharonmc18

Hi, I have been on Kevzara about a year. I think it is working but tappering off Predisone has proved difficult. Ideally I should not need Predisone any longer. So, you right to be concerned with staying on steroid for any longer then necessary. I’m am not sure whether I am dealing with Predisone withdrawal or cortisol insufficiency. If you begin Kevzara, don’t take your eye tapering. When I think about it, the tapering , because of the duration on steroids, causes me more discomfort and debilitation then anything else these days and it will take about a year of this roller coaster to hopefully fully have my adrenals kick back in. Hope this helps. Hang in term, for most of us we should be able to get off all these meds in time 😊

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@sharonmc18 make sure you have had a cortisol level test..
I wasn't able to stop taking prednisone , finally had a cortisol test and found that the use of steroids inhibited cortisol production. I now take hydrocortisone every day.

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Do you continue taking kevzara when you have a cold and cough, viral ?

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Kevzara was a game changer for me. It takes about 2-3 months for the Kevzara to fully kick in. When I started Kevzara my Rhumatologist started decreasing my Pred dose down 2.5mg every 2 weeks until I was totally off. Best thing I did.

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Profile picture for jsue @jsue

Do you continue taking kevzara when you have a cold and cough, viral ?

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@jsue I take Actemra to treat GCA and PMR. Actemra is similar to Kevzara in how it treats the diseases. I was diagnosed 2 years ago. I had 2 colds the first year of my treatment. They both lasted a full 2 weeks, but they weren't any more serious than a normal cold. Six months ago I developed covid, and I asked my rheumatologist if I should postpone the Actemra injection. He said no, that a relapse of GCA and PMR would be much worse than covid. plus Actemra is actually used to treat long covid. The covid case turned out to be very mild and only lasted a couple of days.

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Profile picture for jsue @jsue

Do you continue taking kevzara when you have a cold and cough, viral ?

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@jsue yes, Kevzara no effect for me with a cold etc.

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Profile picture for jsue @jsue

Do you continue taking kevzara when you have a cold and cough, viral ?

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@jsue

You should report “any infection” to your doctor when you on a biologic. However, I reported a cold once and it seemed to create some confusion about why I reported a cold. I mentioned that stopping the biologic might be needed but they only asked me why?

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