Actemra vs Kevzara success?

Posted by carlarosie @carlarosie, Sep 23 1:34pm

My doctor wants to try to lessen my prednisone use by starting me on Kevzara. Can anyone tell me of their experiences, and/or problems in using this infusion.

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DadCue | @dadcue | Sep 23 2:08pm

Kevzara (sarilumab) is self administered by an injection under the skin -- it isn't given as an infusion. It is FDA approved for PMR but not GCA
https://www.webmd.com/drugs/2/drug-173465/kevzara-subcutaneous/details
I have never done the Kevzara injections.
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Actemra (tocilizumab) can be given by injection or a monthly infusion. It is FDA approved for GCA but not PMR
https://rheumatology.org/patients/tocilizumab-actemra
I had a great results from Actemra. I was on Prednisone for more than 12 years. After Actemra was tried, I was off Prednisone a year later. I have been off Prednisone for almost 4 years. I still do a monthly infusion of Actemra. I have PMR, reactive arthritis and uveitis and Actemra is keeping everything under control. I have no side effects from Actemra. Not only was I able to discontinue Prednisone ... I also discontinued six other medications that treated Prednisone side effects.

I started with Actemra injections and was switched to monthly infusions after doing injections for 2 years.

carlarosie | @carlarosie | Sep 23 2:38pm

I have more concerned about GCA and my constant headaches. I’m hoping this will work for me as well. Thank you for the information.

jlo2252 | @jlo2252 | Sep 24 4:57am

@carlarosie
Hello and welcome to this PMR forum! There are some very knowledgeable people here that can guide you on your health journey!
I personally have no experience with the Kevzara injections but I’ve heard nothing but positive things about it.
If you have concerns about GCA I would strongly recommend asking your rheumatologist about the Actemra over the Kevzara. Actemra is the FDA approved drug for GCA and will also help you taper your prednisone.
Well wishes for a healthy future!

besmith57 | @besmith57 | Sep 24 3:38pm

I've been taking the injections for about 3 months. I have not had any side effects. I do think it helps with tapering. I don't remember what dose I was on when I started the injections, but I just tapered to 2.5mg this morning. I think it's worth a try for you. You can always stop them if you have side effects. Good luck!

carlarosie | @carlarosie | Sep 24 10:18pm

Thank you. I haven’t been able to get below 15 mg.

foretravel | @foretravel | Sep 25 9:39am

I have been on Prednisone since January of 2023. After 2 failed attempts in tapering off Prednisone, my Rheumatologist prescribed Kevzara. I have been on Kevzara for 3 months and have tapered to 3 mg Prednisone. In previous attempts to taper, once I got to about 5 mg Prednisone my symptoms would come back. I'm currently tapering at 1 mg/two weeks and hope to be off Prednisone in another month. I have had no side effects from the Kevzara and I feel the best I have since the PMR started in January of 2022. It has worked great for me and well worth the cost. I'm on a Medicare Advantage Plan which required insurance company approval before they would cover the cost of the drug. I was initially deterred by the potential cost, but it has been far less than I expected. I know all insurance plans can be different and I admit I don't understand the whole donut hole and Medicare discount program, but my out of pocket costs have been far less than I expected.