Kevzara Tapering?

Good question!! Personally, I do monthly Actemra infusions and I have been on Actemra since 2019. I said good riddance to prednisone about 6 years ago. It was a day of celebration for my rheumatologist and me.

I assume Actemra and Kevzara both work in the same way. I have been able to stop Actemra very easily but my symptoms returned gradually within a few months along with a slow but steady increase in my inflammation markers (ESR and CRP). I either had to restart Prednisone but my rheumatologist wanted me to restart Actemra which quickly regained control of my symptoms. I was only on prednisone for a few weeks before I tapered from 15 mg to zero again.

It is apparent to me that my rheumatologist prefers that I be on Actemra instead of Prednisone. During my 12 years of PMR with prednisone, my rheumatologist constantly wanted me to taper off prednisone but that was impossible until Actemra was started.

Now that I'm off prednisone and on Actemra, I have to ask my rheumatologist when I will get off Actemra. My rheumatotolgist gets a puzzled look and asks me why do I want to stop Actemra and run the risk of being stuck on Prednisone again.

I don't have any reason that makes me want to stop Actemra so I only ask the question. I don't expect that I will ever be off Actemra but some people do stop these biologics. The research suggests some people can stop IL-6 inhibition and have a sustained remission of PMR/GCA.

I don't think there is a good answer to the question but the following link provides some information.
https://www.sciencedirect.com/science/article/pii/S0049017224001483
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I know in England patients have to stop Actemra after one year because of a government mandate. There was a survey that suggested many people wanted to restart Actemra. They have my sympathy for only having the option of going back on prednisone.
https://www.researchgate.net/publication/380468068_Life_after_tocilizumab_given_for_giant_cell_arteritis_a_patient_survey_and_argument_for_re-treatment

Thank you for your quick and helpful reply. And thank you for the links. I now see the problem--IL-6 inhibitors are necessary as long as there is something that needs to be inhibited--that is, the underlying PMR which has not been "cured."

Kevzara now costs $2000 a month and while my insurance covers it this year, I suspect next year may be a different story, in which case I will have to give it up.

Did you taper Actemra or quit cold?

@cwbf

I didn't have a choice about stopping Actemra abruptly. I started Actemra on January 1st, 2019. I was off prednisone by 2020 but then Covid hit the world. Actemra supplies were being diverted to seriously ill Covid patients during 2020.

I didn't ever test positive for Covid. Because of supply chain problems I wasn't able to get any Actemra for 6 months. I was getting "seriously ill" with pain after 4-5 months and had to restart 15 mg of Prednisone along with Humira (TNF inhibitor) which didn't work.

My Actemra supply was "interrupted" for about 6 months until the supply of Actemra improved. I got the choice of continuing Humira or switching back to Actemra. I quickly decided to restart Actemra and stop Humira. I tapered off Prednisone again in a few weeks.

Do a search on this site…there’s been lots of posts.
My experience was I stopped for 2+ months and CRP number went back up. Dr advised I restart and after kicking the idea around , I did it. I had only been on Kev for 11 months. I’ve been led to think that we need a minimum of 12 months.
I have no other health issues.
No side effects from Kevzara .
I also know that you have to be pain free for some time before doing it.

@tweetypie13
Thank you. Most helpful.

@dadcue
Thank you. Sounds tough for you. Most helpful.

I have been on Kevzara for two years. I have tried to go to a longer interval, but my body didn’t like it, so am back on two week intervals.

My rheumatologist has just said that 12 months on Kevzara is standard before tapering down.