1. < Hypertrophic Cardiomyopathy (HCM)
Profile picture for isamac

Why some stop taking Camzyos?

Posted by isamac @isamac, Sep 17, 2024

Ive been in Camzyos 3+ months with no side effects so far. My diagnostics are showing some lessening of HCM symptoms.
I am a 65 year old woman.
Curious why some come off this drug?
My alternative would be open heart surgery.
Please state your age. Thanks! 🙂

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Profile picture for manuelpo
manuelpo | @manuelpo | Sep 19, 2024

There is a new drug "Aficantem" is in the final stage of trials pending approval by FDA. See here:
https://cytokinetics.com/medicines-research/pipeline/aficamten/
This will be a new alternative for those who have side effects with Camzyos.

My Camzyos is working great on me: reduced my septum basal from 2.2 cm to 1.4 cm in only 8 weeks and the gradient presure reduced from 295 mmHG to 25 mmHg. I no longer have chest pain (angina).

Good luck to everyone and all blessings to all of you.

REPLY
Profile picture for cash298
cash298 | @cash298 | Feb 17 11:49am

Hi, I am 63 yr old, was on Camzyos for 2 mths, my EF went low and they had to stop, all my symptoms came back in about a week, they had to restart it, but now what? Whats going to happen if my EF is too low? I hope when I go to Cleveland next month they will just do surgery. I cant deal with all the ups and downs Ive had over the last 3mths.

REPLY
1 reply
Profile picture for Debra, Volunteer Mentor
Mentor
Debra, Volunteer Mentor | @karukgirl | Feb 17 2:29pm
In reply to @cash298 "Hi, I am 63 yr old, was on Camzyos for 2 mths, my EF went low..." + (show)
Profile picture for cash298 @cash298

Hi, I am 63 yr old, was on Camzyos for 2 mths, my EF went low and they had to stop, all my symptoms came back in about a week, they had to restart it, but now what? Whats going to happen if my EF is too low? I hope when I go to Cleveland next month they will just do surgery. I cant deal with all the ups and downs Ive had over the last 3mths.

Jump to this post

@cash298 , March is right around the corner! Hang on, and have faith. The Cleveland Clinic is one of the top hospitals (right up there with the Mayo Clinic) in treating HOCM...you will be in good hands.
Is there something you enjoy doing that you can turn to in order to break up your negative thoughts? It's easy to say try and focus on the good, but it really does help. A positive attitude can win the day.
Camzyos is not for everyone, and you sadly seem to be one of those this drug is not going to be your friend.
Have you made a list of questions for the Cleveland Clinic?

REPLY
Please sign in or register to post a reply.