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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.

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linnead | @linnead | Jul 11 6:37pm

I think I did 1 mg every two weeks. So the first month I went down to 3 mg from 5. Second month same thing, 1 mg every two weeks. After two months on Kev, I was at 1 mg of prednisone. Another two weeks and I was done with prednisone. My rheumatologist said some people drop 1 mg per week but that just sounded too fast. I was lucky. I feel the Kevzara went right to work on my behalf. Best wishes to you as you continue the journey!

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barjohnson62 | @barjohnson62 | Jul 12 9:08am

As a person who is on a second bout of PMR in 10 years, I have found Kevzara to be a game changer this time around. Have been able to steadily reduce prednisone since I have been transitioning to Kevzara and expect to be clear of it within a month or so. Down to 1.5mg now without issue. No significant pain.

Kevzara is not without its drawbacks. WBC and ANC is moderately low. The transition period with both Kevzara and prednisone further diminishes about to fight off bacterial infections. Having said that, have been around others with COVID and severe flu in past few months but have remained healthy.

Not all good, however, and infection concern is real. Right now battling a skin staff infection -- a case of poison ivy gone bad. It's not fun, but was aware enough to get into the doc and am having to go through a five-day regimen of antibiotics. But they are working, my skin is clearing up, and I'm feeling fine overall.

No easy answers here, but Kevzara has been an overall winner for me. Was in pain most of my first PMR bout. Feeling pretty darn good so far this time with right meds.

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lynnfromoro | @lynnfromoro | Jul 12 11:16am
In reply to @dadcue "@lynnfromoro You could try 1 mg per week but that might not be very realistic. It..." + (show)
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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.
----------------------
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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@dadcue thank you. Great advice.

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tweetypie13 | @tweetypie13 | Jul 12 3:37pm
In reply to @barjohnson62 "As a person who is on a second bout of PMR in 10 years, I have..." + (show)
Profile picture for barjohnson62 @barjohnson62

As a person who is on a second bout of PMR in 10 years, I have found Kevzara to be a game changer this time around. Have been able to steadily reduce prednisone since I have been transitioning to Kevzara and expect to be clear of it within a month or so. Down to 1.5mg now without issue. No significant pain.

Kevzara is not without its drawbacks. WBC and ANC is moderately low. The transition period with both Kevzara and prednisone further diminishes about to fight off bacterial infections. Having said that, have been around others with COVID and severe flu in past few months but have remained healthy.

Not all good, however, and infection concern is real. Right now battling a skin staff infection -- a case of poison ivy gone bad. It's not fun, but was aware enough to get into the doc and am having to go through a five-day regimen of antibiotics. But they are working, my skin is clearing up, and I'm feeling fine overall.

No easy answers here, but Kevzara has been an overall winner for me. Was in pain most of my first PMR bout. Feeling pretty darn good so far this time with right meds.

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@barjohnson62 all good advice nd all the best to you

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eparnold0219 | @eparnold0219 | Jul 13 6:50am

Is Kevzara a "must be on it for rest of life" drug"?

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3 replies
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tweetypie13 | @tweetypie13 | Jul 13 7:29am
In reply to @eparnold0219 "Is Kevzara a "must be on it for rest of life" drug"?" + (show)
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Is Kevzara a "must be on it for rest of life" drug"?

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@eparnold0219 hopefully no…..it’s all abt PMR in remission.

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abd | @abd | Jul 13 8:42am

I was on the Kevzara injector pen and felt some improvement after only two injections (one every two weeks). I was excited about it but a large welt appeared on second injection. Then the third one was the day before an appointment so went ahead with it and before appointment another welt was developing-first welt was receding but still visible. My Rheumatologist discontinued the Kevzara.
We are trying to get Actemra or Tyenne. Speciality Pharmacies cannot get - Warehouse back orders. I have been without medication for 3 weeks. Some days, some symptoms heavier so am just waiting. But thinking Kevzara is certainly one to try.
I have been off Prednisone since February.

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1 reply
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linnead | @linnead | Jul 13 3:58pm
In reply to @barjohnson62 "As a person who is on a second bout of PMR in 10 years, I have..." + (show)
Profile picture for barjohnson62 @barjohnson62

As a person who is on a second bout of PMR in 10 years, I have found Kevzara to be a game changer this time around. Have been able to steadily reduce prednisone since I have been transitioning to Kevzara and expect to be clear of it within a month or so. Down to 1.5mg now without issue. No significant pain.

Kevzara is not without its drawbacks. WBC and ANC is moderately low. The transition period with both Kevzara and prednisone further diminishes about to fight off bacterial infections. Having said that, have been around others with COVID and severe flu in past few months but have remained healthy.

Not all good, however, and infection concern is real. Right now battling a skin staff infection -- a case of poison ivy gone bad. It's not fun, but was aware enough to get into the doc and am having to go through a five-day regimen of antibiotics. But they are working, my skin is clearing up, and I'm feeling fine overall.

No easy answers here, but Kevzara has been an overall winner for me. Was in pain most of my first PMR bout. Feeling pretty darn good so far this time with right meds.

Jump to this post

@barjohnson62 I have been on Kevzara about 4 months now. I also have a terrible poison ivy infection. Mine has stayed poison ivy and not become a staff infection. However I have it everywhere. I did not want to go to the doc and have to take prednisone since I recently got off of it. I think I am winning the battle though. Hot showers really take the "itch" out for several hours. I have had terrible poison ivy before and gone on prednisone. One thing to watch for, if the doc prescribed one week of an antibiotic and you think you are better, you may get a rebound of poison ivy. Happened to me and I needed two more weeks of prednisone to kick it. Good luck. It never occurred to me that I may have some trouble kicking the poison ivy due to Kevzara.

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1 reply
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barjohnson62 | @barjohnson62 | Jul 13 6:06pm
In reply to @linnead "@barjohnson62 I have been on Kevzara about 4 months now. I also have a terrible poison..." + (show)
Profile picture for linnead @linnead

@barjohnson62 I have been on Kevzara about 4 months now. I also have a terrible poison ivy infection. Mine has stayed poison ivy and not become a staff infection. However I have it everywhere. I did not want to go to the doc and have to take prednisone since I recently got off of it. I think I am winning the battle though. Hot showers really take the "itch" out for several hours. I have had terrible poison ivy before and gone on prednisone. One thing to watch for, if the doc prescribed one week of an antibiotic and you think you are better, you may get a rebound of poison ivy. Happened to me and I needed two more weeks of prednisone to kick it. Good luck. It never occurred to me that I may have some trouble kicking the poison ivy due to Kevzara.

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@linnead

That's very interesting. I didn't really expect anybody to be in a similar situation. Unfortunately, in being bad and scratching my poison ivy, I introduced an impetigo staff infection. So keep up the hot showers and don't break the skin! I know the antibiotics won't do anything for the poison ivy, so will be interested to see what happens with that once the staff is under control. Thanks for reaching out.

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kjoed53 | @kjoed53 | Jul 14 7:45am
In reply to @abd "I was on the Kevzara injector pen and felt some improvement after only two injections (one..." + (show)
Profile picture for abd @abd

I was on the Kevzara injector pen and felt some improvement after only two injections (one every two weeks). I was excited about it but a large welt appeared on second injection. Then the third one was the day before an appointment so went ahead with it and before appointment another welt was developing-first welt was receding but still visible. My Rheumatologist discontinued the Kevzara.
We are trying to get Actemra or Tyenne. Speciality Pharmacies cannot get - Warehouse back orders. I have been without medication for 3 weeks. Some days, some symptoms heavier so am just waiting. But thinking Kevzara is certainly one to try.
I have been off Prednisone since February.

Jump to this post

@abd
Keep us updated. I'm tapering down on prednisone due to an SMM diagnosis and will be going on kevzara once all the paperwork goes through. I can't go on prednisone again so I'm interested in the alternative to kevzara just in case...

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