Side Effects of Mavacamten (Camzyos)

Posted by deanna529 @deanna529, Nov 16, 2023

I was on Mavacamten (Camzyos) for 6 months. It immediately triggered Burning Mouth Syndrome, Chronic Lingual Papilitis, and a metal taste in my mouth. I have never had this before. I had to stop the drug because this was worse than HOCM. Quality of life was awful. I couldn't taste anything. Reported it to Bristol Meyers Squib. It had only been on the market for 1 1/2 years when I tried it. At least it is documented.
Has anyone had any bad side effects on Mavacamten?

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dwc62 | @dwc62 | Feb 13 10:51pm

Well, I guess I may have found the culprit when it comes to taste. I was not sure what was happening.

Debra, Volunteer Mentor | @karukgirl | Feb 14 9:33am

In reply to @dwc62 "Well, I guess I may have found the culprit when it comes to taste. I was..." + (show)

@dwc62, you too?
Is your taster affected as well by the Camzyos?
Have you reported this to your doctor and/or the drug company running the trial?
It must be so strange, but at least you may have an answer now, and I am so thankful to @deanna529 and @bigbdmama for sharing their story here. You never know who reads these and how what you share can help others.

Justin McClanahan, Moderator | @JustinMcClanahan | Feb 16 2:33pm

I'd like to invite @hood to this discussion. You posted in another discussion about experiencing slight chest pains when you started your camzyos and this discussion is dedicated to the side effects other members have experienced on camzyos. @hood, how are you currently doing? Did those side effects persist?

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