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What was your experience on Kevzara?
Polymyalgia Rheumatica (PMR) | Last Active: 19 hours ago | Replies (179)Comment receiving replies
@stonewheel
I pay pretty good attention as to what I have done on previous days. For the last three months since starting Kevzara I have noticed not so pleasant reactions for a few days after the injection. This time just seems worse, but my PMR fatigue has been worse lately though. Also since starting the injections my skin, esp. back, has been breaking out and itching terribly. My Dr. didn't seem to be worried per messaging. I see him in one month, the last of my four month experiment, guinea pig, with the injections. I am still on 7 mg of prednisone daily, and just doing my best to figure out a way to alleviate this misery. Caught your sleeping comment, a testament as to just how brutal this disease and its treatment can be. Thanks and be well.
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@danboldman hve a Freind put cream on your back
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@danboldman
The 7 mg hurdle of prednisone is a tough hurdle to get past --- with or without Kevzara. The 7 mg dose of prednisone isn't low enough to decrease adrenal suppression AND 7 mg of prednisone in combination with Kevzara can be too much immunosuppression. Sometimes it isn't fair to blame one medication more than the other medication. Sometimes it is the combination of medications.
I was able to get off prednisone after Actemra (tocilizumab) was tried. It still took me more than a year to taper off prednisone and several "adjustments" were made during the year. Things didn't exactly go according to the original plan and tapering off prednisone still took a long time.
Even after I tapered off prednisone things got complicated. Within a couple of weeks of being off prednisone, I was right back on 60mg again. Actemra was actually stopped for a couple of months while a different biologic was tried. My rheumatologist said Actemra wasn't going to add much to 60mg of prednisone. The problem I encountered wasn't because of PMR because Actemra was working for PMR. Being on two different biologics isn't allowed.
My problem was something completely unexpected and never anticipated. It was believed that another biologic might work better but that wasn't true. I went back on Actemra with some additional adjustments being made and tapered off prednisone again only much faster than the first time.
I didn't feel like a guinea pig. I felt like I was in "uncharted waters" because not much was known at the time. There still isn't too much that is known. There are always things to learn about how each body will react to medications and a combination of medications.