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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walkinggirl | @walkinggirl | Jul 25 9:00am

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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deanna529 | @deanna529 | Jul 25 2:49pm

@walkinggirl
Yes, we are all very different 🙂
My 8 year anniversay was just last week!
Congratulations on 3 years!

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peggynurse | @peggynurse | 6 days ago
In reply to @manuelpo "I have been on Camzyos 1 year and a half. I have some difficulty sleeping but..." + (show)
@manuelpo

I have been on Camzyos 1 year and a half. I have some difficulty sleeping but not too bad. When I am under stress it is hard to sleep my 7 hours and I can only sleep 4 to 5 hours so I am very misserable those days. In general I tried not to worry about anything so I am able to sleep now 6.5 to 7 hours and I feel a lot better. No other side effects at all. I controlled my weight by walking 2 to 3 miles every single day. I eat very healthy diet now avoiding too many carbs. In general, I have been very lucky to have reduced my septum size from 2.3 cm (my heart almost fully blocked with limited blood circulation) to 1.3 cm all of that in a few weeks but I cooperated by having very strict died and a lot of walking so I lost 20 pounds in only 8 weeks which helped my condition. I am still on Camzyos and since my Medicare covers it in full, I am not planning to be out of it for the rest of my life since all the chest pressure is gone from the 1st week I started that medicine. I am very sorry that Camzyos is not for everyone but I am blessed by God it works really very well on me with almost no side effects other than slight insomnia. That insomnia I learned to control it by trying to be relaxed and happy which is not easy but I am still able to do that. God bless everyone and I hope all will get better of this inherited condition of Hypertrophic Obstructive Cardiomyopathy.

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Great to hear!
Your Medicare covers it - no grant or anything else?

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1 reply
manuelpo | @manuelpo | 5 days ago
In reply to @peggynurse "Great to hear! Your Medicare covers it - no grant or anything else?" + (show)
@peggynurse

Great to hear!
Your Medicare covers it - no grant or anything else?

Jump to this post

Due to my low fixed income, I do not pay any copay at all. No grant or anything else!

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