HOCM & VFib amiodarone, sotalol,camzyos

Been on Camzyos since early December 2023. So far only positive results; after the first echocardiogram my doctor rushed to the waiting room to tell my husband that the blockage had disappeared and called it a miracle.
My symptoms of shortness of breadth and feelings of tiredness are things of the past.
Does anyone know if there is a point at which I can come off this drug or is this something I will need to take long term?

Not a doctor. Never played one on TV. My understanding is that if you go off Camzyos, things revert back to the way they were. The treatment is "reversible" that way. There's a video at https://www.camzyos.com/resources that explains the way it works in a nice, simplified way. Made it easier for me to understand how it is reversible. I hope your results are as good as mine, and that they stay that way!

So happy to hear that you’ve had such an immediate and positive result with Camzyos. My symptoms are identical to yours and I expect to be starting on Camzyos in the near future.

Wishing you the best results possible. Feeling so much better after I started on Camzyos.

I have agreed recently to be part of a study and have met with a cardiologist and some med research students. I'll let you know how that goes! My HCM is not genetic so cause is a mystery... O like the fact that a study means attention - and doesn't like that? I am curious if any of you fine folks also have non-genetic HCM? Happy year of the dragon!

My HOCM is also non genetic so all a mystery and diagnosed about 16 years ago. Camzyos just did not suit me and feel worse than before but we are all different. Good luck.

How do you know for sure it is not genetic ?
How long were you on camzyos and when you say did not suit me what does that mean please ? Were you on other meds as well that maybe didn’t work well together ? Would love your feedback here
Thanks

Hi curious how you know it’s non genetic ?
Are you in a REMS study and taking Camzyos? Any other meds?

Hi Meryl-
My cardiologist sent a sample of my DNA to a lab in Finland (!) and the results showed no genetic markers for HCM though I definitely have the condition. I was diagnosed in my mid 60s ( I am now 72). Yes, I am in the Camzyos study and have been taking it for at least 9 months. For me, it is very helpful. It seems trickier as an older person to guage results - deciding what is aging and what is HCM!

Hi Meryl,

As I have had all the tests in the UK plus my sister and my brother and nothing showed up. I am under an ICC unit (inherited cardiac conditions) and they are very thorough and very senior cardiologists. I was diagnosed around 16 years ago when I had an incident in the gym...downhill all the way. Yes other meds may be at play here as on verapamil, small dose of prednisolone daily 3mgs and Omeprazole every third day. I took it for a week and felt amazing but the headaches started and jaw ache and felt awful. Came off for a week and restarted for three days and they started again. I am very happy for the people it works for of which there are many. Good luck on your journey.