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.

kelliw | @kelliw | Mar 27, 2023

In reply to @benjaminallan1945 "Who do you ask?" + (show)

Good morning-I just received a call from MyNurse Navigator rep and he connected me to a nurse, but she didn't see anything written about flying or not, while taking Camzyos and my doctor doesn't know since I am the first patient. I have 2 trips coming up so hopefully I will be fine. 🙂

kelliw | @kelliw | Mar 27, 2023

Has anyone flown on an airplane, while taking Camzyos?

kelliw | @kelliw | Mar 27, 2023

In reply to @klima12 "I hear that!! Wishing you all the best." + (show)

The guy just called! He told me he'd just talked to my doctor and was going to call my insurance when we hung up and that the meds will be handed to me or my husband, not left on the porch or mailbox. They will set up a delivery time. Yay!!!!

jess51 | @jess51 | Mar 27, 2023

Hello - I'm from B.C. here in Canada - I am about 6 weeks into my Camzyos treatment. My Cardiologist got the ball rolling for me. I am eligible for "fair pharma care" (thouh I am not certain that they are covering yet) and have the minimal health coverage plan through Manulife. I was contacted initially by rep from Bay Shore pharmacy out of Quebec. Questions were asked, forms were filled, echos done etc. I get one month supply shipped by courier to me from Bay Shore pharmacy in Vancouver (I am in Victoria) It is fully cover at present. I don't know if this extra information is of use to anyone but perhaps it will help. Good luck all - I have had really good results!!
Kelli - I am so happy that you are on your way

kelliw | @kelliw | Mar 28, 2023

I am receiving Camzyos tomorrow! I will take my first pill tomorrow and then Thursday morning and every morning! Yay! I will let you know how I feel. I'm praying this works!! 🙂

kelliw | @kelliw | Mar 28, 2023

In reply to @jess51 "Hello - I'm from B.C. here in Canada - I am about 6 weeks into my..." + (show)

Hi Jess-I really appreciate your updates! I am so encouraged that it is working for you! It so helpful to talk to another person in the same situation! I can't wait to start tomorrow!

eltorro75 | @eltorro75 | Mar 30, 2023

Hey Guys, You are lucky, that the FDA already allowed Mavacamten in the USA.
In Europe we're still waiting for it. I hope, that maybe in May/June they will start in Europe with Mavacamten.
Reading Your posts gives me really some hope. So please give updates, I'll often read here.
Greetings to all fellow sufferers
Rob

kelliw | @kelliw | Mar 30, 2023

In reply to @eltorro75 "Hey Guys, You are lucky, that the FDA already allowed Mavacamten in the USA. In Europe..." + (show)

I hope it comes to Europe soon! I just took my first pill! I will let you all know how I feel. I am sooo hopeful that this will work.

kelliw | @kelliw | Mar 30, 2023

Hi All-I just took my first pill! I am so hoping that it works. I will let you know how I feel. 🙂

klima12 | @klima12 | Mar 31, 2023

Hello,
I am finally starting on Tuesday. I’m pretty excited. I have tried to read everything I can find about this drug. But I am hoping someone could fill me in on the information they have received. Does the medication reverse the disease? Are we on it for life? Any information would help. Thank you.