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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My rheumatologist suggested Kevzara about 10 months into my PMR diagnosis. However I declined because I was confident I could reduce the prednisone and get the PMR to go into remission. I got down to 5 mg prednisone and was still experiencing quite a bit of pain. I finally said “uncle” and started Kevzara. Best decision ever. Shots easy, pain gone. The prednisone has really messed up my skin but I am completely off the prednisone and so thankful pain is gone. Feeling blessed.

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Profile picture for linnead @linnead

My rheumatologist suggested Kevzara about 10 months into my PMR diagnosis. However I declined because I was confident I could reduce the prednisone and get the PMR to go into remission. I got down to 5 mg prednisone and was still experiencing quite a bit of pain. I finally said “uncle” and started Kevzara. Best decision ever. Shots easy, pain gone. The prednisone has really messed up my skin but I am completely off the prednisone and so thankful pain is gone. Feeling blessed.

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@linnead what was your method for reducing the prednisone? What did your rheumatologist suggest? I am to start Kevzara on Monday. I am presently on 9 mg of prednisone. My rheumatologist says to reduce by 1 mg a week.
So glad to hear about your success with Kevzara!

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Profile picture for lynnfromoro @lynnfromoro

@linnead what was your method for reducing the prednisone? What did your rheumatologist suggest? I am to start Kevzara on Monday. I am presently on 9 mg of prednisone. My rheumatologist says to reduce by 1 mg a week.
So glad to hear about your success with Kevzara!

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@lynnfromoro

You could try 1 mg per week but that might not be very realistic. It doesn't account for the 3 months it takes Kevzara to reach its "full effect" at the start. It also doesn't allow too much time for your adrenals to recover after you reach 3 mg.

A 3-STAGE taper might work better. The following is only a suggestion so discuss it with your doctor. Kevzara should make it easier to taper off Prednisone without the stress of a fixed schedule.

Break it up into thirds:

The first stage for 3 months is slow to give Kevzara a chance to work.
then
The second stage might be faster and 1 mg per week might be good after the first 3 months.
then
The third stage is slower again after you reach 3 mg.

Give your adrenals some time to recover. If you don't have any symptoms of adrenal insufficiency and you haven't relapsed you might taper faster again. The last stage assumes 2 things happen #1 Kevzara is working AND #2 your adrenals are working. The last stage depends on how you are feeling by then.
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A predetermined taper schedule gets frustrating when it doesn't work. There is no single correct way to taper off prednisone and it should be individualized.

Everyone is different. Tapering off Prednisone isn't a competition where you are compared to everyone else. Think of it as a "walk in the park" and you can set your own pace that you are comfortable with. You might even stop and spend some time to appreciate some flowers and not taper at all. Try to taper off prednisone in a reasonable amount of time so people won't worry about you after your walk in the park.

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Profile picture for lynnfromoro @lynnfromoro

@linnead what was your method for reducing the prednisone? What did your rheumatologist suggest? I am to start Kevzara on Monday. I am presently on 9 mg of prednisone. My rheumatologist says to reduce by 1 mg a week.
So glad to hear about your success with Kevzara!

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@lynnfromoro I ditto Mike below/above.
The key is to be pain free for me. If pain, I stayed on it longer.
As Mike says, give the Kev time to work,

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