What was your experience on Kevzara?

@stonewheel

Some people are able to discontinue their biologic after a period of time and they experience a sustained or permanent remission. In England, patients are required to stop Actemra after one year of treatment of GCA. Apparently it does not matter if they relapse. In England they go back on prednisolone (prednisone). In the United States, the biologic can be restarted if patients have relapses after stopping the biologic.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11079613/
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I have been on a biologic for 7 years. Attempts to discontinue it results in a gradual return of my symptoms along with a gradual increase in my inflammation markers. My relapses weren't like a sudden overnight increase in symptoms.
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Biologics don't actually "attack" anything that I know of. Prednisone might be said to attack muscles and bones but biologics don't do that. Artificial intelligence describes it this way:

"Biologics work by intercepting specific molecular signals or immune cells, preventing them from causing inflammation and tissue damage. This targeting is often described as "blocking" or "neutralizing" rather than a non-specific "attack". This specificity is why they typically have fewer side effects than traditional immunosuppressants like prednisone, which affects the entire body more broadly."

Thank you all for the Kevzara info. Sequence of events matches my path.
Seems a year is the time line to be off Kevzara. 🤞🤞🤞🤞
My goal too. Did any of you learn “how” you would get off Kevzara?
Thx

@tweetypie13

Kevzara can be stopped abruptly just to see what happens.

Otherwise, the interval between injections is stretched to a longer and longer time period between injections before stopping Kevzara.

When I was on Actemra injections, I tried to stop it both ways without success. Now I do a monthly infusion. I can go longer than a month but my symptoms start to come back after about 7 weeks. My rheumatologist says I shouldn't go any longer than 6 weeks without an infusion of Actemra.

@laurelfagan Thank you for replying so soon and thank you for the details. I’m glad the Kevzara is working for you so well. I’d not heard of it until I joined here. I’m new to this so I’m trying to learn all that I can. I hope to hear that you are in full remission and drug free before this time next year. Happy 2026.

@dadcue Thank you. I admire your strength.
This is all new to me so I’m trying to learn all that I can.

@stonewheel

These biologics to treat PMR/GCA are newer options for anyone who doesn't tolerate prednisone well or patients who have relapsing or refractory PMR./GCA. I started Actemra at the beginning of 2019 when it was recently FDA approved for GCA but not PMR. My rheumatologologist needed to get authorization to treat me with Actemra with only a belief that it "should work" for PMR. No guarantee that Actemra would work but I needed to be willing to try it.

It didn't take too much strength for me to try Actemra. I only needed to overcome being discouraged by the people who claimed prednisone was the "only option" for PMR/GCA.

@dadcue Thank you.
I was diagnosed on November 12, 2025.
I see my PCP on January 18, 2026. I’m taking Prednisone 20mg in the morning and after two weeks went from 20mg to 15mg in the evening. 35mg/day total. Also, he prescribed Omeprazole 20mg daily to protect my stomach.
I couldn’t sleep more than 4 hours, so he then prescribed Temazepam 30mg and that helps me sleep 7 hours. Prednisone makes me irritable and crave food.
I’m walking around in a brain fog because of the Temazepam (I think that’s the cause) and I can’t help but wonder about biologics. Is it too soon for me to ask about taking a biologic or too soon to begin a biologic? Your thoughts and advise are appreciated.

@stonewheel

It used to be that prednisone was the "only option" for PMR/GCA. The side effects of prednisone were well known . However, since Prednisone was believed to be the only option, there weren't too many other medications that were tried.

My biggest regret was not being started on a biologic sooner. Until relatively recently there weren't any biologics that were FDA approved for either PMR or GCA. Now there are several biologics available and more are coming down the pipe.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr
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Because of how expensive biologics are in general, it might be hard to get started on one. I think the current belief is that Prednisone should be tried first before switching to a biologic. Usually patients need to have at least one relapse before a doctor considers a biologic.

There is no guarantee that a biologic will work. There are also side effects from biologics although I don't seem to have any serious side effects from Actemra.

GCA patients have an easier time being started on a biologic by a doctor.

PMR patients seem to have to wait to see if Prednisone will work first. Most PMR patients are happy with the immediate pain relief that prednisone provides. There needs to be a greater awareness about the long term consequences of prednisone.

My personal opinion is that it is never too soon to start a conversation about switching to a biologic especially if you are already having side effects from prednisone. Those medications already being started to prevent and/or treat Prednisone side effects will add up.

@stonewheel
Yes. Still on Kevzara

Travelling with Kevzara takes a lot of preplanning to keep it refrigerated between 36°-46° F. Otherwise, at room temperature, it must be used within 15 days or thrown away. Some medical-grade small cooler containers are available with USB connections-must alert TSA. Check if hotel has a guest accessable refrigerator. On a 2 week vacation, I get an extra supply to refrigerate at home before I leave, (health insurance allows 2 early supplies a year) then I take an injection day I leave and day of return. Kevzara is well worth the hassle.