Anyone take new drug Camzyos (mavacamten) for HCM?

Good morning Jess-I was wondering when you felt you were able to start taking walks again? I have been feeling great so far. When did you experience the leg tingling and nausea? Was it the first couple of days or further in? I feel a little dizzy right now. I know that is normal they say...
Thank you!

That is so exciting! I just took my 3rd pill and feel great! No side effects so far! I would love to know the answers to your questions too!

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.

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

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.

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

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!

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!! 🙂

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

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!!!!