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.

Profile picture for Mike @dadcue

I'm assuming your "off label" use of Actemra is for PMR since it isn't FDA approved for PMR. There is no guarantee that Actemra will work for everyone with PMR. The SEMAPHORE study reports 49% of patients in the Actemra group no longer needed Prednisone.
https://www.medpagetoday.com/rheumatology/generalrheumatology/100815#:~:text=About%20half%20of%20patients%20with,Brest%2C%20France%2C%20and%20colleagues.
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I was lucky to have tried Actemra for PMR. I was able to taper off Prednisone after about a year. Actemra takes about 3 months to be fully effective. I was able to taper from 10 mg to 3 mg of prednisone in 4 months. I had to stay on 3 mg for another 6 months because of secondary adrenal insufficiency which was a side effect from taking Prednisone for 12 years to treat PMR. Adrenal insufficiency could be one reason why Actemra isn't allowing you to taper off Prednisone.

After I tapered off prednisone I had a flare of another autoimmune disorder and needed to take Prednisone again. Having other conditions in addition to PMR may be another reason why you can't taper off Prednisone.

It is possible that you were misdiagnosed and you don't have PMR.

Maybe you do have PMR but Actemra doesn't work for you since IL-6 isn't your primary inflammation pathway.

Remember that half the people with PMR who were trialed on Actemra weren't able to taper off Prednisone. If you aren't able to taper off Prednisone ... have you been able to reduce your Prednisone dose substantially?

I have been Prednisone free for 4 years. Actemra has been extremely effective for me.

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SEMAPHORE study:

"About half of patients with steroid-dependent polymyalgia rheumatica (PMR) were able to get off steroids altogether when they were started on tocilizumab (Actemra) infusions, which also improved disease control in most cases, a randomized phase III trial showed.

In a 24-week study, 49.0% of patients assigned to the interleukin (IL)-6 inhibitor were no longer taking prednisone at their final evaluation."
https://jamanetwork.com/journals/jama/fullarticle/2796378

REPLY

Kevzara taper? I have tapered off of prednisone while using Kevzara.
At what point does the Dr, start a taper for Kevzara?
And do you know how it works?
Thx

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Profile picture for tweetypie13 @tweetypie13

Kevzara taper? I have tapered off of prednisone while using Kevzara.
At what point does the Dr, start a taper for Kevzara?
And do you know how it works?
Thx

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I wonder that too.

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Profile picture for tweetypie13 @tweetypie13

Kevzara taper? I have tapered off of prednisone while using Kevzara.
At what point does the Dr, start a taper for Kevzara?
And do you know how it works?
Thx

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The decision to discontinue Kevzara is made by your doctor. No tapering is needed like prednisone is tapered. Kevzara doesn't cause adrenal suppression. There is no risk of an adrenal crisis like there is for prednisone when it is stopped abruptly.

The only risk of stopping Kevzara too soon is the possibility of a relapse although symptoms shouldn't return suddenly. Sometimes the time between injections is extended to see if your symptoms start to return.

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Profile picture for Mike @dadcue

The decision to discontinue Kevzara is made by your doctor. No tapering is needed like prednisone is tapered. Kevzara doesn't cause adrenal suppression. There is no risk of an adrenal crisis like there is for prednisone when it is stopped abruptly.

The only risk of stopping Kevzara too soon is the possibility of a relapse although symptoms shouldn't return suddenly. Sometimes the time between injections is extended to see if your symptoms start to return.

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Thx so much. My Dr did not go into that step.

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Hey Mike @mikeydee
I can’t answer your questions above because I’m on on prednisone rn, but my rheumatologist has been recommending for a while now that I go on Kevzara. Frankly the list of side affects scares the heck out of me, and I’m wondering if you felt the same way but chose to go on it anyway. I’m having a very difficult time getting off the prednisone after more than two years. In December I was down to 2 mg but had severe flare ups that I went back to 10. I’m now down to 5 mg but not doing well and hence the recommendation from my Dr to get on Kevzara.
Any feedback on this subject is greatly appreciated from anyone who has used Kevzara. Thank you!

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I've been on Kevzara for 2 months and was at 5 mg prednisone when started. I've tapered to 4, 4, 3, rotating. The Kevzara has helped I believe with no side affects, although just within the last month. I'm hoping to get off prednisone in the next 1-2 months and be on Kevzara only. Hope this info helps you. Only pain I'm having now is hip pain when standing too long, and shortness of breath. But I also have A-Flutter and it may be responsible for the shortness of breath.

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Profile picture for kpoesch @kpoesch

I've been on Kevzara for 2 months and was at 5 mg prednisone when started. I've tapered to 4, 4, 3, rotating. The Kevzara has helped I believe with no side affects, although just within the last month. I'm hoping to get off prednisone in the next 1-2 months and be on Kevzara only. Hope this info helps you. Only pain I'm having now is hip pain when standing too long, and shortness of breath. But I also have A-Flutter and it may be responsible for the shortness of breath.

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Thanks kp for your feedback. How long were you on prednisone before starting the Kevzara? Were you eager or anxious to get on the Kevzara?

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Profile picture for heals1225 @heals1225

Hey Mike @mikeydee
I can’t answer your questions above because I’m on on prednisone rn, but my rheumatologist has been recommending for a while now that I go on Kevzara. Frankly the list of side affects scares the heck out of me, and I’m wondering if you felt the same way but chose to go on it anyway. I’m having a very difficult time getting off the prednisone after more than two years. In December I was down to 2 mg but had severe flare ups that I went back to 10. I’m now down to 5 mg but not doing well and hence the recommendation from my Dr to get on Kevzara.
Any feedback on this subject is greatly appreciated from anyone who has used Kevzara. Thank you!

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Kevzara……Lucky me, no side effects, except a minor rash where I place injection occasionally. Note: I use some lotion on it, no big deal. I’m abt to have my 9th dose.
I resisted taking “another” drug. At no point did I understand that it would allow me to “get off of prednisone”. I had been stuck at 7-9 prednisone for a few months, when I started. I have self tapered. No flares, but did/do have some muscle overuse.
GREAT NEWS, took my LAST prednisone 1mg yesterday.
May my success continue and come your way too.
I am so grateful for this Group.

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Profile picture for tweetypie13 @tweetypie13

Kevzara……Lucky me, no side effects, except a minor rash where I place injection occasionally. Note: I use some lotion on it, no big deal. I’m abt to have my 9th dose.
I resisted taking “another” drug. At no point did I understand that it would allow me to “get off of prednisone”. I had been stuck at 7-9 prednisone for a few months, when I started. I have self tapered. No flares, but did/do have some muscle overuse.
GREAT NEWS, took my LAST prednisone 1mg yesterday.
May my success continue and come your way too.
I am so grateful for this Group.

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PS: FYI: I’m 79 yo woman.

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