Has anyone stopped taking camzyos? I have stopped and feel very sick.

I was on Camzyos for over a year. I was on 5mg. Had an echo and was told to go off of it now. That was 5 weeks ago. Because I had heart failure and my ejection fraction decreased to 45. Had to have echo in a month. Which I did and was told if it went up then possibly try 2.5mg. Camzyos. Dr is out of town till next week. My ejection fraction is up to 55. My concern is I did not feel good after going off it. Feel awful. I don’t want to wait another week. Told Camzyos stay in system a month ago. I am concerned, I keep getting side effects . . I cannot take the ups and downs. I also just had breast cancer with radiation and put on new meds for that. Has anybody else went off and back on? Don’t like the withdraws. Messes with your body.

I got off camzyos. Did not work for me. It’s when I decided to have the septal myectomy. I came to terms with it. I felt awful on camzyos. Unfortunately, I had to have a second septal myectomy at the Mayo Clinic. Dr. Derani told me he has to do many re- dos. I am 36 but after 2 open hearts in less than a year, I have major confusion and anxiety. They say it’s typical. So I am perhaps still recovering. It’s been 14 months since surgery. Hang in there. There will be a solutio.

Thank you for your input. It helps to hear other people’s stories and that you can relate to it. I wish you well, it’s typical for confusion and anxiety. I am sure it will get better. Two open hearts within 14 months is a lot. Keep going will get better. I keep telling myself that there is light at the end of tunnel. Feels better just discussing it. An we are not along. Prayers

I was only diagnosed 7 years ago. It is such a terrible disease that really no friends or family understand. The camzyos and the amt of water, and dizziness and fear, were unbearable for me.

Hello Everyone,
I was diagnosed last October with HOCM, and had been on increasing doses of Verapamil, which helped my symptoms somewhat but did nothing for the obstruction. So my cardiologist prescribed Camzyos in May, but insurance has still not approved it. My question is: has Camzyos actually helped anyone long term? Should I advocate for the surgery? I just want to feel normal, which I'm not even sure if I've ever known what that is like! Hope to get some responses. Thanks in advance.
Elaine

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.

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?

I am so sorry about the ablation outcome. I am hopeful we will all help doctors figure out this horrible disease. I had never heard of it until 7 years ago. I don’t recognize myself. Camzyos worked periodically. There were appointments where my doctor would marvel at its success only to have it all fall apart in the next appointment. I think everyone’s body is different. I was on it when it was a trial. The people in the commercials look so happy. None of them look like they have Hcm- very deceptive marketing. I pray for all of us. It will be ok.