Anyone take new drug Camzyos (mavacamten) for HCM?

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 Kelli -

My side effects were, fortunately, only in the first few days. I was so relieved when they disappeared - nausea can be something that is not easy to adjust to! I didn't experience any dizziness above and beyond what I experience occasionally with my low blood pressure... I am experiencing NO side effects now which is wonderful. I have tried to stay with daily walks pretty continually (even before) but I felt a real difference in my breathing pretty quickly - (within just a few days) and have started an exercise class for seniors. No cardio in this class but enough movement to note an improvement for certain. This has really lifted my spirits. I have no idea whether Camzyos has any effect on the further advancement of HCP - big question for my Doctor! I suspect not but I am interested in how this will continue to help over time, depending on how advanced one's condition is. ...Always lots of questions !

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!

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

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.

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