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Camzyos Side Effects

Hypertrophic Cardiomyopathy (HCM) | Last Active: May 25 12:07pm | Replies (14)

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@holly1275

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.

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Replies to "Sorry to hear that you had all that trouble. Glad you are feeling better My Cardiologist..."

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.

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. 😊

Please find another Cardiologist that treats patients with Camzyos and ask an opinion about the side effects.

My first 2 weeks I got some dizziness and I was taking also (Coricidin for a bad cold which will make the dizziness worst). Because my muscle blockage in my heart was starting to reduce from 2.2 centimeters to 1.4 cm in only two months of camzyos, I felt something inside my heart that was kind of strange as if "someone was very slowly manipulating that blockage". I tried to relax and I avoided being in panic so all is working in only 2 months a lot better in my heart and the blockage reduced from this huge size of 2.2 cm to 1.4 cm which is considered a mild blockage compared to the 'severe blockage of 2.2 cm'. My dizziness was temporary and was not all day long no way it was for a few seconds on and off for a couple of weeks. Now I am not dizzy anymore and I do not feel any strange thing manipulating inside my heart.
I hope my experience helps you in some way. God bless you and protect you.