← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

Discussion
Comment receiving replies
@markmayo

I was diagnosed with HCM in 2012. She recommended alcohol ablation. Since I didn't feel bad except when hiking trails in the Smokeys I decided to use drugs METOPROLOL, LOSARTAN, VERAPAMIL. I know the drugs help because now if I miss one dose blood pressure goes up, pulse is too strong, headache, etc. Now my cardiologist is entering me in CAMZYOS REMS program because he thinks it offers benefits for HCM that blood pressure drugs don't. In 2019 I was a participant in MYK-461-005(EXPLORER-HCM) clinical trial. I think it would be nice to know if I was on the placebo or the drug during the 6 month trial. NOBODY will tell me not my cardiologist at Mayo who wrote the scripts for the trial, Mayo pharmacy who dispensed the pills, BMS drug company who sponsored the trial, Mayo Research, FDA Clinicaltrials.org, Principal Investigator Dr. Steven Lester, etc. Since I didn't feel at all different during the trial than I did before or after the trial I think I was on the placebo for 6 months but it would be nice if they would confirm that.

Jump to this post


Replies to "I was diagnosed with HCM in 2012. She recommended alcohol ablation. Since I didn't feel bad..."

Hello @markmayo, and WELCOME to Mayo Connect! I tried to join the study you mention, but it was too late and had already started when I found out I had HOCM. I ended up having a septal myectomy at Mayo Rochester 3 years ago. Hypertensive therapy did not work for me. But the septal myectomy did!
I have absolutely no knowledge of clinical studies, blind-studies, double-blind studies, etc. but I did a itsy bitsy bit of research just now and if I understood correctly, in a double-blind study neither you nor your doctor knows if you are taking the drug or the placebo. You are both blind. At the end of the study, you are 'un-blinded' so you do know which you were on. Again, disclaimer...I have virtually zero knowledge about how studies work. So if the study is over, you should be notified. Do you know if the study is done? I would be super frustrated and want to know too!! When do you start Camzyos?