Anyone take new drug Camzyos (mavacamten) for HCM?

Welcome @dwc62 . Lots of supportive people here to bounce questions and concerns with. I just started Camzyos exactly 5 weeks ago today. So far I'm one of the lucky ones who have had only positive side effects. Within just a couple days my symptoms were starting to vanish, and since the 2 week point I have not experienced a single instance of palpitations, dizziness, chest pain, or any of the other things that had been dogging me for 17 years. I now just live in fear that this is too good to be true and Rod Serling is going to jump out from behind a bush and say "just kidding." Seriously, if it continues like this, it's a miracle drug for me. If you are on this path, I hope you have the same results.

How many months have you been on Camzyos?

Hello @dwc62, I'd like to add my welcome to @karukgirl's. I moved your discussion and combined it with the discussion @karukgirl shared, titled: "Anyone take new drug Camzyos (mavacamten) for HCM?
"- https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/.

I did this so you could meet the many members sharing their experience taking Camzyos like @newtosohcm and @whidbey.

@dwc62, if you are comfortable sharing, were you recently prescribed Camzyos or are you just trying to learn more about it before you start a new medication?

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Hi back at you @dwc62 and WELCOME to Mayo Connect!
I have posted a link for you regarding all things Camzyos here on Mayo Connect. Take a look around that support group and you will learn many things Camzyos related. There are a lot of new members in this support group, as Camzyos is relatively new on the scene as a treatment for HOCM (hypertrophic obstructive cardiomyopathy) and there is success with it's use and some failures as well. Are you on, or being considered for Camzyos?

Is anyone else on CAMZYOS? If so how does it make you feel.

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?

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.

I did not take notes back in May when I received the call from Bristol Myers Squibb (BMS) since I was in my car but the answer is I will have NO out of pocket cost the first year and the $10,000 covers the entire year. The copay (my share) CHANGES each month. So far I have only seen two statements but I have some exact numbers for you. Camzyos costs $8216.98 for 30 pills. The first month (which was from June) my "share" would have been $3,095.25. The month of July my share would have been $759.00. I vaguely remember being told on the phone that the next ten months my share would be in the $300 or less dollar range where the total 12 months cost would be in the $7000s. Optum (my pharmacy) has a "credit card" given to them from BMS for $10,000 to cover the year. Every month I am told from Optum that I have no copay. I should have no out of pocket expenses for my first year.

I reread the study I agreed to and I wanted you to know that the study has no monetary benefit to me so the study does not pay for my Camzyos.

This is to the best of my understanding. I do know that my doctor's office worked very hard to find out about the grant and to make sure that Camzyos would not cost me anything. They consulted with other cardiologists who had patients who had started on Camzyos before I did to get help in navigating the costs for me.

I am on the plan since March. I'm very grateful for my increased energy. I know nonhing about the yearly plan. I'm grateful each month I receive a refill and will wait to figure next steps if/when there's a change. Hope you can do the same.

Does the grant of $10,000 cover the whole year? Our copay with our RX insurance will be $1679/month. So does the grant cover just so many months at that copay amount? The $10,000 would only cover 6 months then, if I understand correctly. Very confusing, but grateful for any grant!