Anyone take new drug Camzyos (mavacamten) for HCM?

Hi Everyone-I had my follow-up to my echo this morning, and everything is still looking great! We talked about my dr.'s phone call regarding the "protocol" that said I need to stop taking Camzyos for a month and how he said no I want to keep her on 2.5 mg. Don't do this to her! She is feeling great! They said OK! They also said a pharmacist cannot override a doctor's orders.
So I talked to the specialty pharmacist today and she sent my prescription. It will be here Wednesday. I have 6 pills left, so will be just fine! Sooo if this happens to you, your doctor can override the protocol for you. I will have another echo next month, not in 3 months, to make sure everything is still fine. Hallelujah! 🙂

I'm glad you see him Monday. Did you share your experience with Mayo Connect with him? He has no idea we all think he's a hero!

I'm glad you see him Monday. Did you share your experience with Mayo Connect with him? He has no idea we all think he's a hero!

Thank you! I really feel like the rug has been ripped out from under me. I am going to Colorado with my best girlfriends in 2 weeks and am so looking forward to feeling great! They better refill my prescription! My doctor is awesome! I will see him Monday and will talk more about all of this then. 🙂

Well, I am on day 12. I have not been feeling great since Sunday; sorta off feeling- a little lightheaded, more fatigued, some increased shortness of breath, blood pressure and heart rates are up.

So, after some back and forth pushing with my cardiologist, who said side effects are rare and did not think my symptoms were caused by Camzyos, he ordered an echo and got me in for it today. He is a Rock
Star, and a major advocate of Camzyos, so when he speaks the hospital jumps. I will report echo findings once I get them,

I hope these symptoms are temporary and the miracle drug will give me a better quality of life. I remain positive and hopeful.

It is stressful. But, the good news is that your cardologist sounds very supportive which should give you a lot of comfort. Our journey is a winding road and the GPS (protocol) is telling you to go in a direction you don’t want to go. I hope your cardologist will be able to override and keep you on the path to a better quality of life.
It’s great to know a cardologist has the ability to override the protocol when in the best I Teresa of the patient.

I hope that he can override you skipping a month. Selfishly I am worried about this when I get my next echo. However, it is an FDA rule. But what is the point of taking us off for a month so your LVOT can increase if within a few days we can't walk up stairs or any incline or have pressure in our chest again, etc. One would think they would try having us take a pill every other day or some other solution because this will be a concern for many of us where the LVOT falls below 20 mm HG. Thank you for sharing!!

@kelliw, I don't know what to say to what you just shared! That has got to be the dumbest thing I have heard. There must be some scientific reasoning behind letting you go off for a month and see what happens. They must know something is going to happen. What if the something is BAD? Then what is their position?
Thank goodness your doctor is on your side, and not Big Pharma. Thank goodness he is willing to not only go to bat for you, but stand up to them as well. He deserves an award!
The last thing you need is more stress about this.
Hang in there. Praying for you that this gets resolved quickly and in the right way.

I just received a call from my cardiologist. I am going to see him Monday, but he wanted to call to tell me that everything from the echo still looks great and my EF is now 60-65%. It was 55% last time. HOWEVER since my LVOT is still at 8, (remember it was at 75 before Camzyos) he said their protocol is to make me stop taking the medication!!! WHATTTT???? They said stop it for a month, have another echo in a month and go from there. I DO NOT want to start feeling miserable again! He said he knew I would have a fit, so he called them and asked why in the world this is written this way and they said ya, it shouldn't have been written that way. They went on to say that at this point if the cardiologist feels that it is safe and in the best interest of his/her patient's health and well being to stay on the 2.5, that he could override the protocol. He said my heart is actually doing better and he wants to keep me on it and do another echo in a month. He said he may get kick back from the specialty pharmacy but he was calling them. This is not OK! I know they have to be careful so we don't have heart failure, and this is all still new, but this is extremely stressful, knowing how good I feel now and how horrible I felt before.