Anyone take new drug Camzyos (mavacamten) for HCM?

Thank you Debra for your words of encouragement. My doctor is on it. I went for a walk yesterday with my husband and dog and towards the end felt really dizzy and like I was going to faint. He went and got the car and picked me up. I've been fine until yesterday. For some reason my blood pressure has been high since I was in my dr's office Thursday-really high yesterday-190/105. Luckily my dr. was on call. He said I didn't have to go to ER and he wants to put me on a BP medicine. He chose one, but then called me back to say he gave it a lot of thought and wants me to do the clonidine patch. I read about clonidine and the possible side effects are gnarly. Ugh-he said if I don't feel good I can take the patch off. I just have to trust that he knows what I need. I thought I was in smooth sailing zone and now all of this! But I am trying to stay positive. I still feel so much better than I did before! 🙂

@kelliw, I hope you get a response from another member who has had their dose lowered. I wish I could add my experience, but since I can't I can perhaps say I don't blame you for worrying. Who would want to go back to where you were before? But your doctor sounds like he is following protocol which is what they are supposed to do. That's great that he called you too. It shows you are not falling thru the cracks. And, he is following you very closely, which should bring you some comfort. It sounds like a good thing to me to have the dosage lowered. Is it your understanding that if it works, and you feel fine at the new dose then it appears you are on the right course? Or if it doesn't work on the new dose, then it sounds like he will go back to 5mg? I like @jaymaysea's advice...Stay positive!

I think we will all be going through what you are. You are six weeks ahead of me. This drug is still in its infancy. Your doctor sounds on top of everything and thank you for keeping us posted.

Stay positive.

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?

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 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!

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

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..

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