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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hocmgirl | @hocmgirl | 1 day ago

I have HOCM as well. Not on any prescriptions for it due to side effects of Metropolol (I have low pulse and BP when not on it)

Supplements have been helpful: Magnesium, copper, CoQ10 and natural blood thinners/anti inflammatories. I have changed my diet, removing all alcohol/junk foods/gluten/sugar.

It surprised me to read HCM may be a result of a copper deficiency and is one reason for supplementing. Zinc can deplete the copper and was why my primary also advised this.

I am noticing improvement. Now focusing on oral and sinus health (both can affect the heart...I had snoring issues for years), checking hormones to assure they are becoming more balanced, also improving air quality in my home and reducing toxins as these lead to inflammation and affect the heart.

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deanna529 | @deanna529 | 15 hours ago

In response to @jmr091805 and @jachrist
I had a septal myectomy in 2017. They did "crack open my chest". ( open heart surgery) They have to do that in order to shave down your heart. I had it done at UPENN. At the time I was offered a sepal ablation also however I chose not to go that route because sometimes it's not permanent. I have a friend that has to have her 2nd septal ablation. I just wanted it to be "one and done". Everyone is different. I was even on Mavacamten for 6 months. It did not agree with me. So last year I signed up for a clinical trial of Aficamten. That did not agree with me either. Both of those drugs are cardiac myosin inhibitors. Aparently I developed bad side effects from both. Not for me but they have worked wonders for others. Good luck and don't give up.

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susanml | @susanml | 1 hour ago
In reply to @jmr091805 "I started Camzyos today. I am very nervous about both my heart and about the risks..." + (show)
@jmr091805

I started Camzyos today. I am very nervous about both my heart and about the risks and side-effects of Camzyos. I just took the first 5mg dose 2 hours ago and am already feeling light-headed and a bit dizzy. I am in Los Angeles and my cardiologists are at UCLA. They are excellent but my heart is not. Cardiologists have said that if Camzyos doesn't work for me, my only other option is cracking my chest open and having open heart surgery to "shave" down the thickened walls of my heart. My hypertrophic cardiomyopathy has become obstructive. I was diagnosed about 3 years ago and they put me on metoprolol. But about 2 months ago, I started having both-sided chest pressure/ache, shortness of breath, constant fatigue, and I felt my heart "beating out of my chest". Echocardiogram did not show obstruction so they did a special kind of cardiac catheterization where they injected something to speed up my heart and measure pressures and gradients. That showed obstruction even though echocardiogram missed it. I'm 57, male, and am feeling cheated by my poor health. I also have other major health problems. And I live on my own with no one to help me. I'm also afraid of losing my health insurance this year. I was already afraid of it and then the new president came in and seems to be trying to destroy healthcare to pay for tax cuts for the rich. I'm not from LA originally so I don't have friends here and due to my health, I can't work or participate in activities. This feels like the last chapter of my life.

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Hi jmr. You sound very low and I encourage you to try Camzyos. It has worked wonders for so many of us here. The side effects are hopefully minimal and will pass quickly. I’ve been lucky in having very few side effects but great results. I’m 20 years older than you and I’ve got my life back. Please persevere. Wishing you well,

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walkinggirl | @walkinggirl | 1 hour ago
In reply to @jachrist "I had HOCM and was treated at Mayo in Rochester, MN. My aorta, ventricle, and septum..." + (show)
@jachrist

I had HOCM and was treated at Mayo in Rochester, MN. My aorta, ventricle, and septum were thick. They surgeons entered through an artery in my groin and did an alcohol septal ablation to thin down my heart. They did not "crack" my chest. I was in ICU for a few days.
Find out why they want to crack your chest?

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jachrist is fortunate that an alcohol septal ablation worked so well for her, I was hoping for the same treatment. This is a very good example of how each of us is different. The doctors at Mayo and my cardiologist at home deemed that treatment inappropriate for me in order to achieve the best results because of the location of the thickness; I had a septal myectomy with excellent results.

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