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Kevzara and Prednisone Tapering before and during Kevzara
Polymyalgia Rheumatica (PMR) | Last Active: Sep 28 11:02am | Replies (82)Comment receiving replies
"Frankly the list of side affects scares the heck out of me, and I’m wondering if you felt the same way but chose to go on it anyway."
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I'm just wondering what side effects of Kevzara are so frightening to you? I don't wish to downplay any side effects because they do exist.
I have been on Actemra for more than 6 years with hardly any side effects compared to Prednisone side effects. I was reluctant to start Actemra because nobody knew anything about it. It was relatively new treatment for PMR/GCA at the time when I started Actemra. There was fear mongering about the side effects on another PMR forum from people who had no personal experience with taking Actemra. These same people downplayed all the Prednisone side effects which I had already experienced.
I almost refused Actemra after my rheumatologist went to all the trouble of getting it approved for me. However, I made a commitment to my rheumatologist that I would be willing to try Actemra if it was approved.
Rather than confirm or deny the "potential" side effects from Actemra, my doctor just said I wouldn't know if Actemra would work or not unless I tried it. That seemed logical to me instead of fearing the unknown. My doctor also said I could easily stop Actemra if I experienced side effects.
The only thing that bothered me was when my doctor wanted me to do injections every 2 weeks instead of weekly. My doctor said he wanted to "play it safe" with less frequent injections.
I'm glad I overcame all my fears. Actemra works well for me with almost no side effects. More importantly ... I was able to taper off Prednisone for the first time in 12 years.
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Boxed warning
Kevzara carries a boxed warning from the FDA, indicating a risk of serious and potentially life-threatening infections. These infections can include bacterial, viral, or fungal infections, and some cases have been fatal.
Other serious side effects
Blood disorders: Kevzara can lead to neutropenia (low white blood cell count) and thrombocytopenia (low platelet count), which can increase the risk of infections or bleeding.
Gastrointestinal perforation: Tears in the stomach or intestine can occur, especially in individuals with diverticulitis or those taking NSAIDs or corticosteroids.
Cancer: Kevzara may increase the risk of certain cancers, such as lymphoma or skin cancer.
Allergic reactions: Serious allergic reactions, including anaphylaxis, can occur, and some cases have required hospitalization.
Liver problems: Kevzara can elevate liver enzymes, potentially indicating liver damage.
Reactivated infections: Kevzara may reactivate latent infections like tuberculosis (TB) or hepatitis B.
Common side effects
This is what I see as the side effects that scare me. I know prednisone comes with side effects as well, but fortunately I have not experienced any, yet I am so hoping to get off it as I know long term use is not a good thing. I just got down to 5mg in June, but as of last week I’m back up to 7 mg, so going in the wrong direction, and still have a lot of discomfort in the mornings. This is why Kevzara has been recommended by my doc and I’m now seriously considering it. I just wanted as much feedback from this group as possible before making my decision.
Thanks to all who are willing to share their experiences!