← Return to Has anyone had a septic myectomy and then had to go back on camzyos
DiscussionHas anyone had a septic myectomy and then had to go back on camzyos
Hypertrophic Cardiomyopathy (HCM) | Last Active: Jun 3 8:55am | Replies (20)Comment receiving replies
Replies to "Would like how you get on with Aficamten? Please do let us know. Thanks."
I, too, would like to try avicamten. A year on camzyous, then a septal myectomy and now bnp is up to 144 and gradient back to 50
I am on a clinical trial. It is not FDA-approved yet. I am on week 24.
You have to find a cardiologist or a hospital that participates in clinical trials. My first cardiologist who diagnosed me did not participate with Mavacamten. So I moved on.
My guess is you start with your cardiologist 1st. Not all cardiologists participate.
I was referred by a doctor from UPENN to NYU. I went to NYU for Mavacamten. Then I switched to Morristown Hospital in NJ. It was closer for me.
The new cardiologist asked me if I was willing to participate in a clinical trial. I agreed. Especially because I had septal myectomy already so what did I have to lose. A lot of red tape and I had rigorous screening before I was accepted. Quite a process.