Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Nov 1, 2023

In reply to @nanamc1957 "I've been taking for 3 weeks have my first echo on 11/8." + (show)

@nanamc1957 that is next week!! I bet you are anxious and excited to find out if it's doing what it's supposed to do! Keep us posted, okay?

nanamc1957 | @nanamc1957 | Nov 1, 2023

In reply to @karukgirl "https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/ Hi back at you @dwc62 and WELCOME to Mayo Connect! I have posted a link..." + (show)

I've been taking for 3 weeks have my first echo on 11/8.

Debra, Volunteer Mentor | @karukgirl | Nov 1, 2023

In reply to @markmayo "The coordinator finally replied and said it hasn't been unblinded yet and may be a couple..." + (show)

Ahh, so you are still blind...that must be frustrating, but at least you know why you haven't heard. Not that that is helpful to you right now, right? So what is your plan, do you start Camzyos now? There are so many good stories here about it. Some not so good either, but at least you will be in good company.

markmayo | @markmayo | Nov 1, 2023

In reply to @karukgirl "Hello @markmayo, and WELCOME to Mayo Connect! I tried to join the study you mention, but..." + (show)

The coordinator finally replied and said it hasn't been unblinded yet and may be a couple years. She said when it is unblinded they will try to contact everyone.

boatsforlife | @boatsforlife | Oct 31, 2023

In reply to @dwc62 "Is anyone else on CAMZYOS? If so how does it make you feel." + (show)

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.

whidbey | @whidbey | Oct 31, 2023

In reply to @jaymaysea "I am jealous and so happy for you. For some, Camzyos is like a miracle drug...." + (show)

How many months have you been on Camzyos?

Justin McClanahan, Moderator | @JustinMcClanahan | Oct 31, 2023

In reply to @dwc62 "Is anyone else on CAMZYOS? If so how does it make you feel." + (show)

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?

Debra, Volunteer Mentor | @karukgirl | Oct 31, 2023

In reply to @dwc62 "Is anyone else on CAMZYOS? If so how does it make you feel." + (show)

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?

dwc62 | @dwc62 | Oct 30, 2023

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

Debra, Volunteer Mentor | @karukgirl | Oct 30, 2023

In reply to @markmayo "I was diagnosed with HCM in 2012. She recommended alcohol ablation. Since I didn't feel bad..." + (show)

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?