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.

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?

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?

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.

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.

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.

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 @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?

williampconley | @williampconley | Nov 1, 2023

I've been on Camzyos for 30 days.
I have HoCM , septum = 16-17mm.
No miraculous symptoms reduction to report, but my symptoms are on the mild side.
Chest discomfort and light headedness when going up hills or stairs.
General chest discomfort, sometimes while doing nothing.
But ...had my first (post med) echo last Friday and my Gradient went from 35/50mmHg (rest, Valsalva) to 13/17 !!
Based on the algo, I just went from 5mg to 2.5mg.
Next echo 11/22 ...

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

In reply to @williampconley "I've been on Camzyos for 30 days. I have HoCM , septum = 16-17mm. No miraculous..." + (show)

Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the group. You must feel pretty happy about those results from your echo. There a so many great members on here who share your same story, and they have been so helpful to one another in the ups and downs of Camzyos. I hope you do well on the lowered dose, and thankfully you have another echo coming up in three weeks. When were you diagnosed with HOCM?

markmayo | @markmayo | Nov 1, 2023

In reply to @karukgirl "Ahh, so you are still blind...that must be frustrating, but at least you know why you..." + (show)

I am planning to try Camzyos. I didn't feel at all different before, during, or after the clinical trial so I think I was placebo. When he did screening exam for the trial he said at that time "he wouldn't recommend referral for septal reduction". I'm hoping Camzyos and losing 100 lb will help me get around better without open heart surgery. So far I'm down 20 lb in 2 months.