1. < Hypertrophic Cardiomyopathy (HCM)

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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jachrist | @jachrist | 6 hours ago
In reply to @deanna529 "@jachrist How long ago did you have it?" + (show)
@deanna529

@jachrist
How long ago did you have it?

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I was originally miss diagnosed as an asthmatic for 16 years, when my breathing kept getting worse. I was an arson investigator and former fire fighter. Then I experienced a sudden cardiac arrest. Mayo knew that I had HOCM.

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jachrist | @jachrist | 6 hours ago
In reply to @jmr091805 "Thank you for this information. I asked my cardiologist and she said alcohol septal ablation would..." + (show)
@jmr091805

Thank you for this information. I asked my cardiologist and she said alcohol septal ablation would not be the preferred path for me if the Camzyos doesn't work, and that crack-chest-shave-heart surgery would be better for me. I am treated by a cardiac group that is excellent. Believe me, I'm hoping Camzyos works and that I don't need the open heart surgery.

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Best to You!!
Prayers your way!!

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