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Side Effects of Mavacamten (Camzyos)
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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Oh my! Just from the comments made by my fellow big-hearted online friends one can easily see how different we all are. My HCM went from asymptomatic to obstructive overnight - literally. The thickening was happening all along, of course, but reached the critical stage during one dark cold February middle of the night. Camzyos never came up during the discussions with my HCM-knowledgeable cardiologist, who diagnosed HCM soon after I had an audible heart murmur. At the February turning point, I began the surgery journey. When I learned about Camzyos, my cardiologist said from reading the medical literature on it that most patients eventually need surgery and advised me to have that asap. By the way, my 3-year anniversary was 7/21!
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1 Reaction@walkinggirl
Yes, we are all very different 🙂
My 8 year anniversay was just last week!
Congratulations on 3 years!
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1 ReactionGreat to hear!
Your Medicare covers it - no grant or anything else?
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1 ReactionDue to my low fixed income, I do not pay any copay at all. No grant or anything else!
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2 ReactionsHi I’m on Camzyos 6 months now I have had a hard lump on my lip for 2months now and just started to see another one start i’m thinking it’s coming from the Camzyos as a side effect. I will be going to a dermatologist sometime next week. I’m also on Metoprolol 100 mg has anyone else had a breakout around their mouth from Camzyos
Hello @elepez
Welcome to Mayo Clinic Connect. You've come to the right place to find out from other people who are also on Camzyos.
I cannot speak to anything related to this drug, I did not qualify for it and had a septal myectomy instead.
I am posting a link to the Camzyos REMs program, just in case you did not know about it.
https://www.camzyos.com/taking-camzyos/camzyos-rems
I hope you get some answers about those lumps on your mouth...that must be rather concerning.
Have you referred this new issue to your cardiologist or pharmacist?
I’ve had muscle weakness in my arms and legs to the point of needing to use a walker.
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2 ReactionsI'm joining the discussion to add to the great variety of responses to Camzyos. I've been taking it since the end of April this year. So far, I've had no side effects and it is improving my condition steadily. I did find, however, that taking 5 mg pills did nothing to improve my symptoms - difficulty on long stretches of stairs and walking uphill, although I felt my stamina had improved. My dose was recently increased to 10 mg and I'm feeling more energetic and less difficulty on stairs.
It's funny - after years of having progressively less energy and difficulty on slops and stairs, I'm not quite sure that I'm fully recognizing improvement.
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2 ReactionsI am having the same problem a hard lump on my lip I’m on Camzyos 5mg it’s now 6 months and 100 mg metoprolol I also have one starting on the other side of my lip and a very small one on my forehead. It has to be from the Camzyos even though my cardiologist says it’s not. I will be going to a dermatologist in a week or two. Good luck with yours.