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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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Well, I guess I may have found the culprit when it comes to taste. I was not sure what was happening.
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1 Reaction@dwc62, you too?
Is your taster affected as well by the Camzyos?
Have you reported this to your doctor and/or the drug company running the trial?
It must be so strange, but at least you may have an answer now, and I am so thankful to @deanna529 and @bigbdmama for sharing their story here. You never know who reads these and how what you share can help others.
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2 ReactionsI'd like to invite @hood to this discussion. You posted in another discussion about experiencing slight chest pains when you started your camzyos and this discussion is dedicated to the side effects other members have experienced on camzyos. @hood, how are you currently doing? Did those side effects persist?
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2 ReactionsI was taking Camzyos for 10 days with side effects joint pain dizziness and not sleeping chest pain worse than before I was taking it.
I stopped it on my own.
I’m pretty sure it was raging a war inside my body. I had dizziness so bad that I could hardly function. The cardiologist kept saying ( can’t be the drug) I was on it for 5 months, before being taken off it. Then was diagnosed with Amyloidosis. Am being treated for that now with the HCM on the back burner.
Have a clearer brain now ( most days)
I’m sorry you had such rough side effects. Hopefully they can get you on something that works better.
Sorry to hear that you had all that trouble.
Glad you are feeling better
My Cardiologist says there no other options.
That Camzyos is the only drug available.
As all the other drugs caused problems for my stomach
He says surgery is not a option.
I saw him yesterday and he was rude like always .
Afraid to even ask any questions he was also saying that my side effects weren't from Camzyos.
There is a new drug "Aficamtem" is in the trial test stage so not approved by FDA jet. Hopefully it can be approved soon so you may have another option.
Here is the weblink for that new drug:
https://cytokinetics.com/medicines-research/pipeline/aficamten/
I hope that may help you.
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2 ReactionsThank You...
I am so sorry. The Cardiologist I see didn’t listen to me either. Made me so mad. Now that I’m seeing them not so frequent because this amyloid is the main concern right now. I’m firing him when this is over. He won’t look me In The eye when he talks to me. He did actually apologize that they drug their feet on all the tests they didn’t do. I went to the Mayo in Rochester Minnesota and they did all the test plus more the heart institute was supposed to do.
It makes it hard when you can’t talk to your doc I’m not sure if it’s because they think they are smarter than us or what but people like to be listened to when it their body going through this stuff daily. I asked him, do you think I’m making this up? He didn’t say anything. That just made me madder. I wanted to throat punch him🥊! Then I’d be in jail, and I’d have to fight people, so I refrained LOL!
On a serious note, consider a new cardiologist. Rudeness shouldn’t have to be tolerated. You’re paying for his services. Ain’t right!
Prayers you find some answers. 😊
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1 ReactionThank you so much for your kind words.
I am glad you found your way through all of the bad things and you are on your way to recovery.
I do hope you fire them no excuses for not listening to what you have to say.
I live in FL and was diagnosed in Dec.
I was seeing a cardiologist but he couldn't do anything with the Hypertrophic Cardiomyopathy so he referred me to a clinic in the hospital and my nightmare began🤬
My gradient is high .
I have some calcium in there but he doesn't mention that .
And here comes the bad part I wore a heart monitor and got back on the first results wrong camId number and the wrong time I wore it then got back more results four days later with the right time my name again different cam # and someone else's birth date. I called them and they said it was transcribed by a patch and the second one was mine.
They never did nothing to resolve the problem I don't trust Dr judge ment.
Thank you for kind words .
Feel better