Kevzara and Prednisone Tapering before and during Kevzara

Posted by mikeydee @mikeydee, Jul 3, 2023

I recently stated with Kevzara and I am interested in those who are currently on prednisone and Kevzara.
I would like to know...
1. What was your starting dosage of prednisone and how long have your been taking prednisone?
2. What was your daily dose of prednisone before Kevzara?
3. What was your prednisone tapering schedule before starting Kevzara?
4. What was your lowest dosage of prednisone before Kevzara and did you have difficulty dropping below that dose?
5. What is your tapering schedule now that you are on Kevzara?
6. How successful has this schedule been so far and have you had any flare ups?
7. What is your target date for stopping prednisone?
8. What changes have you noticed in your health, aches and energy level since starting Kevzara?
Please feel free to add any more information that might be helpful to those contemplating starting Kevzara or those currently on Kevzara
Thanks
Mike

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

@harelover

I am about to start Kevzara but would not have been able to since the cost to me would have been close to $2k every 28 days. I applied for patient assistance through the drug company and will be receiving the med at no cost to me. I am on Medicare and a good supplemental plan but the coverage was not good enough to pay for all of it. The process is fairly simple and it’s done through their website. I hope this helps you and that you are able to stay with the treatment especially since it seems to be working for you.

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Yes through Kevzara connect. That is what I use.

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@harelover

I do not have a co-pay card since I do not get it through my pharmacy. I have been approved for the drug through KevzaraConnect. They ship the medication to me every month. I will have to be re-approved again at the end of 2024. I pray I won’t need to take this drug beyond that. I haven’t even started this medication so I don’t even know if it will work for me.

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You won’t know if Kevzara will work for you unless you try it and see.

Give it at least 3 months to see if it works. It might be working for PMR but not for osteoarthritis and other types of pain people may have.

Prednisone works for many types of pain so people sometimes don’t have as much pain relief as they experience with prednisone.

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@dengland

I recently started Kevzara 11/23
I was diagnosed with PMR 7/22 my Pred dose was 20mg at diagnosis. I have tapered to 5mg which is the lowest dose I can tolerate to date. However I still am experiencing joint pain. I keep to this dose to ward off more weight gain. I have gained 30 lbs since 7/22. In 8/23 I accidentally lowered to a 1 mg dose mixing my pill containers for a week and had a Flare up that lasted a month+
I was at 5mg prednisone when starting Kevzara. I am still experiencing pain in my shoulders,
hips and knees joints. I am managing but not 💯 by any means.
I am going to see my Rheumatologist for my taper scheduled today. I am at 6weeks for both meds. I am a bit concerned about the taper due to my current pain level on both meds we shall see how it progresses and I will share. I did have one injection site issue a week or so after injection. No other notable side effects at this time.
I would be interested to hear what others experience and I will share what my doctor says as I go.

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To update: I had to stop the kevzara due to allergic reactions at the injection site that were increasing with each injection. I got 5 shots in with only one not being an issue. My blood work looked great levels low and I was 3/4mg prednisone on my taper when stopping. My Rheumatologist is trying to get actemera but it is off label so the insurance company denied. I continue to attempt the taper and hope to get off prednisone someday! I am curious if anyone else has seen this issue. It is the prominent side effect but I typically don’t have allergies.
Hopefully research will expand for PMR and we will have better options available to us.

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@dadcue

Excellent questions!!

Kevzara is FDA approved for PMR but not GCA.

Actemra is FDA approved for GCA but not PMR.

I would also ask if people are being treated for PMR, GCA or both PMR and GCA.

Actemra and Kevzara should work the same for either PMR or GCA. Both medications are IL-6 receptor blockers. Maybe include people who take Actemra too.

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I have had PMR and GCA since 03/21 My GCA is in remission ( 2 years blood tests )
PMR is very active. Has anyone switched from Actemra to Kevzara.
I do not take Prednisone since 09/21

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@khmc

I have had PMR and GCA since 03/21 My GCA is in remission ( 2 years blood tests )
PMR is very active. Has anyone switched from Actemra to Kevzara.
I do not take Prednisone since 09/21

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Were you on Actemra for GCA? Did Actemra help with getting GCA into remission?

I was prescribed Actemra for PMR. There is the potential that someday Actemra will completely stop working.

Actemra was FDA approved for GCA in May of 2017. An exception was made to treat my case of PMR "like you would treat a patient with GCA." Even though I was never diagnosed with GCA -- Actemra worked for me. I got completely off Prednisone.

Kevzara wasn't an option in 2019 when I started Actemra. Kevzara was FDA approved for PMR a year ago in February, 2023. My rheumatologist said Kevzara would now be an option for me if Actemra stops working. Yes, it is possible to switch from Actemra to Kevzara.

A sustained remission is the goal of these biologics. Another goal is to prevent the relapses which happen to 50% of patients who are unable to taper off Prednisone in a reasonable period of time.

Sounds to me, if PMR is still very active, you are not in remission. You are still at risk of a GCA relapse. I would think you would be eligible for either Actemra or Kevzara.

As the commercials say, "ask your doctor if this medication would be right for you."

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@dadcue

Were you on Actemra for GCA? Did Actemra help with getting GCA into remission?

I was prescribed Actemra for PMR. There is the potential that someday Actemra will completely stop working.

Actemra was FDA approved for GCA in May of 2017. An exception was made to treat my case of PMR "like you would treat a patient with GCA." Even though I was never diagnosed with GCA -- Actemra worked for me. I got completely off Prednisone.

Kevzara wasn't an option in 2019 when I started Actemra. Kevzara was FDA approved for PMR a year ago in February, 2023. My rheumatologist said Kevzara would now be an option for me if Actemra stops working. Yes, it is possible to switch from Actemra to Kevzara.

A sustained remission is the goal of these biologics. Another goal is to prevent the relapses which happen to 50% of patients who are unable to taper off Prednisone in a reasonable period of time.

Sounds to me, if PMR is still very active, you are not in remission. You are still at risk of a GCA relapse. I would think you would be eligible for either Actemra or Kevzara.

As the commercials say, "ask your doctor if this medication would be right for you."

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Just did my 4th injection of Kevzara with no ill effects. Currently on 5mg of Prednisone and will be for another two weeks which will be a total of 30 days since tapering from 7.5. I'm curious what others have experienced on Kevzara while tapering. What was the rate of taper for you on Kevzara? How long were you on it? Did you taper off completely and then continue the injections for a while. I have followed many of the posts who have tried Kevzara which have been helpful, but I was wondering if there are any additional folks that might be willing to share.

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I started Kevzara Dec 16th for PMR prednisone tapering. I quit March 1st due to side effects. I am now at 7 1/2 mg prednisone. The lowest dose ever in 3 1/2 years. I felt great on it with much less pain. My skin was not happy. My skin began to peel off, I had skin infections and developed skin cancer. I just had MOHS surgery on the back of my hand for squamous cell cancer leaving a large painful wound. Several other suspicious spots were frozen. Where else might I have developed cancer? This skin cancer a tiny bump popped up suddenly and grew aggressively. I am sad I had to stop taking it. I also experienced infections in my eye lids which was hard to control.

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@queenie2030

I started Kevzara Dec 16th for PMR prednisone tapering. I quit March 1st due to side effects. I am now at 7 1/2 mg prednisone. The lowest dose ever in 3 1/2 years. I felt great on it with much less pain. My skin was not happy. My skin began to peel off, I had skin infections and developed skin cancer. I just had MOHS surgery on the back of my hand for squamous cell cancer leaving a large painful wound. Several other suspicious spots were frozen. Where else might I have developed cancer? This skin cancer a tiny bump popped up suddenly and grew aggressively. I am sad I had to stop taking it. I also experienced infections in my eye lids which was hard to control.

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So sad it did not work for you. Every drug comes with it's problems. No magic cures for sure. Hopefully you will just one day wean off of the Prednisone. I am so looking forward to that day, just had to up it 1/2 mg and pain still not gone. A yo-yo ride for sure. Good luck to you, I wish you the very best.

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@ddonnagirl1

So sad it did not work for you. Every drug comes with it's problems. No magic cures for sure. Hopefully you will just one day wean off of the Prednisone. I am so looking forward to that day, just had to up it 1/2 mg and pain still not gone. A yo-yo ride for sure. Good luck to you, I wish you the very best.

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Thank you for your kind response. It certainly is a yo yo event. Hopefully one day we will all be off prednisone.
Best wishes!

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@queenie2030

I started Kevzara Dec 16th for PMR prednisone tapering. I quit March 1st due to side effects. I am now at 7 1/2 mg prednisone. The lowest dose ever in 3 1/2 years. I felt great on it with much less pain. My skin was not happy. My skin began to peel off, I had skin infections and developed skin cancer. I just had MOHS surgery on the back of my hand for squamous cell cancer leaving a large painful wound. Several other suspicious spots were frozen. Where else might I have developed cancer? This skin cancer a tiny bump popped up suddenly and grew aggressively. I am sad I had to stop taking it. I also experienced infections in my eye lids which was hard to control.

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Yikes! That sounds awful. I am so sorry that you had that reaction. I'm curious when the skin side effects started on Kevzara. You started in December and discontinued in March, Correct?
Can you try one of the other biologics or would the potential for repeat infections and skin issues be the same.

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