My doctor is hoping to start me on Kevzara and we're now in a stage 3 appeals process with my insurer who keeps denying it (saying it's not identified for PMR - apparently they missed the memo from February. Thanks all for posting your experiences - I'm 53 and was diagnosed last August after an initial diagnosis of lyme back in 2014 when I was just 44 (and PMR ruled out b/c I was too young.) Have been unable to get below 8 mg of pred daily. Now trying to go down .5 mg every ~3 weeks and it's tough. And then flares seem to come out of nowhere.

Just took my first dose of Kevzara two days ago. Diagnosed in January 2023, on 15 mg prednisone, and tapering efforts only resulted in more pain. Still on 15 mg and pain varies from between 2/3 to 4/5.

Yesterday after my first shot it felt like I had been run over by a bus. PMR pain in arms and legs worse. Now a good 6. Anyone else have that happen? Hoping it is temporary.

All these drugs seem to have that risk from infection.

That's the hope my doctor gave me re Kevzara, that he can wean me off prednisone, which apparently has worse side effects, I guess because it suppresses the entire immune system whereas, as I understand it, the biologics target the one responsible for specific conditions.

This is interesting!

@nyxygirl
Very interesting information. Thank-you

I might delve into inflammation pathways more. I don't understand much more than the IL-6 cytokine. My knowledge of the IL-6 cytokine is rudimentary.

The IL-6 receptor blockade that Actemra (tocilizumab) provides me has made a world of difference. My rheumatologist is now documenting that PMR is in remission. The real question now is whether or not PMR will remain in remission when Actemra is stopped. I don't think there is any way of knowing unless I give it a try.

I'm currently doing monthly infusions of Actemra. My role is to show up for my infusion every month. I like it that way because I no longer worry about how much prednisone to take. When I was doing Actemra injections, I still needed to think about what day it was so I wouldn't forget to do my injection.

My rheumatologist says I shouldn't worry about inflammation pathways. He says cytokines have a way of communicating with each other so there isn't an "individual IL-6 inflammation pathway." Cytokines are complicated web of communication channels with a lot of "cross talk" along with endocrine signaling. He acknowledged that IL-6 is a key cytokine player for several autoimmune disorders.

In the realm PMR and GCA, the following link suggests some progress is being made at last!
https://www.hcplive.com/view/uncovering-the-mystery-advancements-treatment-polymyalgia-rheumatica

While I’m always happy to hear of new meds that might help my T2 diabetes and now PMR, I think I’d rather sit this one out on Kevzara until we see results and side effects.