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Profile picture for barjohnson62 @barjohnson62

I'll just chime in as another recent Kevzara convert. Been on it for approximately 2 months now -- this is my second debilitating flare of PMR over about 9 years, with this one hitting me hard last fall. It probably took me 5 years to work through the first flare up. Needed 20mg prednisone to get it under control this time. Now down to 5mg and still titrating quickly -- although will probably go a little slower than the doc is telling me for these last 5. (He says go down 2.5mg a week. I will probably half that for this last bit, even though I'm having no problems. Flare ups can mean months of set backs.)

By everything I've read, IL-6 inhibitors take time to build up and be fully effective. Like 3-6 months. That's one of the reasons I'm slowing my titration some. By the time I'm off prednisone (if all goes well), I'll have a little over 3 months of Kevzara in me.

I've had no side effects on the Kevzara and have been pushing my body fairly hard.

Your other concern should be cost and how long your insurance will pay for it. These shots can cost a couple thousand per dose. Insurance companies don't like that, compared to the few cents prednisone costs per dose. So make sure it's sustainable if you go down this road. I'm fortunate as a retired soldier -- the VA has been amazing to work with where I'm at. But I've read others who have had to quit Kevzara once insurance said it would stop paying. Then you're back to prednisone, which is nasty stuff to be on long term. I wouldn't want to be switching back and forth.

The thing I don't know is how long I will have to be on Kevzara or how titrating off that even works. Taking this one step at a time. My attitude toward all meds is get off them quickly.

I've taken a full-body approach this time. Learned a lot from my first go. Dietary controls (Input stringent limits on calorie intake), physical therapy, Chinese medicine (Tai Chi and acupuncture), chiropractor, daily exercise. Try everything you can. If nothing else, it helps you feel in control. The weight gain that can come with prednisone and the lack of movement is, I believe, extremely negative to overcoming PMR. So do whatever it takes to get out the door and keep moving.

Next step for me when ready to get off Kevzara might be to try a GLP-1. Early off-label use for inflammation such as PMR has shown promise.

Hope you find some of that helpful! Good luck.

r/ Barry

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Replies to "I'll just chime in as another recent Kevzara convert. Been on it for approximately 2 months..."

@barjohnson62
Hi. What do you mean early off label ?
Thanks
Ellen