Anyone take new drug Camzyos (mavacamten) for HCM?

My daughter is being measured for open heart. She is 38, divorced, with a son (5) on the spectrum. We had some weeks of good results on camzyous and many bad. She was first in Houston. Everyone is different, however. She never really had bad side effects. Gradient would go to 0 and several weeks rise to 100, then back down, then up again. Side effects more from heart failure. We are all terrified. She only weighs 100. Suffered from septic shock in January. Has been on camzyous since last October.

I definitely will! I don't know if you saw my post from after my ECG-but the technicians never say a word about anything, but this time, she said well this must be a miracle drug because everything looks FANTASTIC! Hopefully the dr. will say the same thing! 🙂

I have not stopped thinking about you and your daughter. It is such a frightening situation, @dbrima. I hope you will come back and post how she is doing, what the test results show and what the plan going forward is. Reach out whenever you feel like it...I know you have a lot on your plate right now. While you are caring for your grandson and trying to help your daughter, be sure to take care of you too! That is super important, as you have so much going on, and sometimes we forget to take care of ourselves in the midst of terrible trials. Thank you for sharing your daughter's experience with others. It may not be want people want to hear, but it is the truth in your case and it is always best to know both sides of the story. When will you know the results and the plan?

Thank you. I will know in 2 weeks. She has had one of 3 tests for the septal myectomy.

Navy and marine corps,
Murphy being the devil dog he is is happy to be anywhere I am lol.. he’s happy to go on adventure..

Day 13
5mg at 0807
Weight 267
20oz coffee and a couple cookies for breakfast, 12oz Diet Coke, 28oz zero Gatorade
500mg metformin and a pain pill
Still no side effects and I feel great, sleeping good, and feeling normal..
Last night I feasted on sushi for dinner, Murphy had steak
Tonight I’m gonna have a Diet Coke
A ribeye and the last of those Costco devil chocolate chip cookies, some sautéed brussle sprouts and 500 mg metformin.
Until tomorrow I wish you all good health and I’ll see ya tomorrow
Dave

Good morning! I had my follow-up appointment with my doctor yesterday, after my 2nd ECG. He said my heart is functioning normally! My numbers were good-not sure what they all mean. The only thing that was different was my pulmonary function was out of whack. I stopped using my 2x/day Qvar inhaler because I feel so good. My pulmonologist didn't tell me to stop, I just did it. My cardiologist said that could be why the numbers were off, so start doing it 2x/day again. Cardiologist keeping me at 5mg. and is happy I am having success! Me too!

Nice way to start off the Memorial Holiday @kelliw, with good news like that. Hope the change back to using the inhaler does the trick. So happy you are feeling good and having success with Camzyos. Wishing you the best as we begin our weekend remembering those who served our great nation and those who died for our freedom.

Good morning-I received a call from my cardiologist last night. He said the protocol is since my gradient numbers dropped below 20, and everything looks good, he has to back off the medication, so is dropping me from 5mg. to 2.5 mg. This makes me very nervous that I am going to start feeling like hell again. My gradient was at 21 for a long time, then jumped to 75!! That's when I started taking Camzyos. This last ECG showed the gradient was at 8!! I have only been on Camzyos for 60 days, and as you all know am feeling so good! My doctor said we will see how I feel with the lower dose and go from there. Ugh...maybe it is a good thing to take less of this, but we shall see. Has anyone else had this happen? If so, how do you feel now?

Stay positive.