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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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@peggynurse Also, I see you are a nurse.
Do you have Hypertropic Obstructive Cardiomyopathy?
I see you are on Mavacamten so I am assuming that you have it.
I am a nurse, retired.
I do have HOCM, diagnosed about 1 1/2 years ago.
On Camzyos, 5 mg daily. just had blood work today and echo next month then may decrease dose to 2.5.
It has brought my numbers within normal range.
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1 ReactionExcellent! Continued success on your journey.
You have not had surgery?
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1 Reactionno surgery. Camzyos doing the trick right now. can’t say I have no side effects but …
Also have mitral valve stenosis and regurgitation. ohhh!
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1 ReactionI'm truly happy for all HCM patients who have access to Macavene in developed countries—it's a life-changing opportunity. Unfortunately, in Ethiopia and many parts of Africa, this medication is still out of reach. I hope for the day when such advancements become available to all who need them; otherwise, I am sure that one day, we will all meet in paradise. Wishing everyone on this treatment the best!
Hello @ache6941, and welcome to Mayo Clinic Connect.
I am so glad you found this site, but I am very sad to hear about the inability to get this life-changing drug in Ethiopia.
It must be so frustrating. I can't even imagine.
You bring up a point that I think many people here on Connect may echo...we are so very blessed to live in the USA or Canada, or other places that have access to this medication. We may often fail to remember other people living in other places do no have the same advantages.
Do you have Hypertrophic Cardiomyopathy?
Yes! I have HCM and take 100 mg of beta-blockers twice a day. But my doctor says the LVOT thickness is getting bigger, and the blood regurgitation is getting worse. I need surgery or Mavacamten as soon as possible, but neither is available in my country.
I can feel it—my breathing is getting worse, my nights are sleepless, and now I can’t even walk on flat ground. Life is very hard. I have three children, but I struggle to keep going. Every day feels like a fight, and I am getting weaker. Still, I am happy for those who get a second chance to live, even if I may not.
People travel to Mayo from all over the world. Does anyone know how to contact the people who take a referral for surgery - from reviewing a case to financial help - before the concierge service can do their part?
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1 ReactionI 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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1 ReactionI 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?