← Return to Has anyone stopped taking camzyos? I have stopped and feel very sick.
DiscussionHas anyone stopped taking camzyos? I have stopped and feel very sick.
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 1 6:39pm | Replies (48)Comment receiving replies
Replies to "Hello Everyone, I was diagnosed last October with HOCM, and had been on increasing doses of..."
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
https://www.camzyos.com
https://www.4hcm.org (has a link to COE's by state)
Hello @eleaine6415, and welcome to Mayo Clinic Connect.
I posted a link to the Camzyos group that may have some information that addresses your question.
I also posted a link to the Camzyos site and Hypertrophic Cardiomyopathy Association for you to check out.
Verapamil is used to treat some of the symptoms of HOCM, like heart rhythm issues, shortness of breath. It is a beta blocker I believe and used to treat symptoms but not the obstruction. So it makes sense it didn't work for that.
It's not possible for me to answer your question, because I didn't get to try Camzyos, and had a septal myectomy instead. So I won't pretend to know anything...because I don't!
Camzyos has been around for a little while, but not a real long time. Each person reacts to this drug in different ways. For some it's life changing and they feel great. For others, they cannot tolerate it, and have to go off. It is not a cure for HOCM, but it is used to help patients have lessened symptoms and better quality of life. But again, it is not a cure. Like a placeholder kind of. I shouldn't speak too much about it, because as I said...I just don't know that much about it.
Have you had a chance to read any of the stories here on Connect in the HCM group?
@brumaster a member who just recently had to go off Camzyos to get to open heart surgery, has a great story to read. If you get a chance read some of his journey. It will inspire you.
To wonder if you should advocate for open heart surgery would require the input of HOCM experts like the ones at Mayo Clinic, Cleveland Clinic, Cedar-Sanai and others.
There is certain criteria that is usually part of the decision to operate, such as the thickness of the obstruction and your symptoms and quality of life.
Nobody want open heart surgery, but I can testify that I am so glad I had it done. I was in pretty bad shape by the time I got to the Mayo Clinic. I was fine for years, and in a short amount of time I had no quality of life. Everything I loved to do, I could no longer. I have never regretted having surgery.
I don't blame you for wanting to just be normal!
Is your cardiologist well trained in HOCM and Camzyos? It is super important that they are, and also for you to learn as much as you can so you can help in the decision making.
This is your life! You want the best, and you need to know you have expert advice going forward.
I would consider seeking advice from a COE, Center of Excellence. This facilities are top notch in the treatment and care of patients with HOCM.
Have you considered a second, third or as many opinions as you need to feel confident?
Connect

I had alcohol septal ablation surgery. They went through my femoral artery. The surgery was uncomfortable but manageable. I spent a few days in ICU after surgery. At times I'm still short of breath and have chest pain but the surgery was necessary.
Now I have stiff heart syndrome so my heart does not pump adequate blood supply to my brain and I experience eschemic strokes.