Anyone take new drug Camzyos (mavacamten) for HCM?

I’ve been taking Camzyos for two weeks now. I had no episode today but my ears ringing is driving me nuts.
My main concern is that this drug is a treatment, not a cure. I feel better today in general and it will help me improve my physical health in preparation for surgery. I’m going to talk to my cardiologist on Monday and request rescheduling my surgery date.

Jess51, I answered your question about how they determine when to lower a dose in terms of how it was explained to me as a separate post.

I had my first echocardiogram since getting on Camzyos today and my doctor is changing my dose from the beginning 5 mg to 2.5 mg. This is my understanding as to why. Two areas they are most concerned with is the LVEF (Left ventricular ejection fraction). Mine went from 79% to 73% in the 3 1/2 weeks. They weren't concerned with this. The other area is the LVOT (Left Ventricular Outflow Tract Obstruction). Mine went from 100 mm HG to 16 mm HG. This is significant and caused the change in my prescription. The FDA does not want the LVOT to go below 20 mm HG. So, for my renewed prescription, I will go down to 2.5 mg. In four weeks I will have another echocardiogram. If my LVOT is still below 20 mm HG, I will be taken off of Camzyos and then rechecked four weeks later. If if stays at or above 20 mm HG my prescription will not change. Talk about change. I will say I haven't felt this great in years. So, let's see what happens over the month.

It has been a while since I checked in - for good reason! I am 4 months into Camzyos and it has been a total (positive!) game -changer for me. I noticed that a few people have mentioned starting at the 5mg dose and then perhaps having the dose lowered. My Cardiologist mentioned that when I see him at the 6 month mark (two months from now) my dose will be lowered to 2.5 mg. I did not ask why - but I am curious. Does anyone know the answer to this? Obviously there was no immediate need to to do this, but this is the plan.... I'm curious...

I am so interested by each person's journey with their treatment - I really appreciate this forum

I was wondering what the best time to take it was. Thanks so much for your comment. It’s comforting!

I have been on Camzyos for 6 months and I feel so much better I take it before I go to bed and haven't noticed any side effects yet

I hope you are feeling better today. Is your doctor easy to contact if you need to get ahold of them?

Today I had to clean the house this morning. I took day to my heart rate heart rates been up over 100 115 when I get home I feel like right now it’s still at 100 101 102. I feel like weird, not spinning in the head just some kind of blow today. My backs been killing me because I did something to my SI joint pulled a muscle or something. It’s been hard for me to sleep the last couple days, but I’m doing OK I guess

Hello Mary/ @sunndyduke2, Welcome to Mayo Clinic Connect! You will be comforted by knowing there are many others, just like you, who have come here to find and share information about HCM, HOCM, and the new drug Camzyos. I had open heart surgery, so I have no experience with Camzyos. There is a whole new group here taking this drug, and they have shared their experiences with each other, and those who may be reading their post.
@nbs, @lgerding, and @jaymaysea are each correct in their encouragement and responses...it takes courage to try something new, without knowing what the results may be. Every drug has side effects that would scare folks into not even trying...so you have already made the brave decision to at least give it a shot. Good for you!
As mentioned, it is not for everyone, and I would tell you not to fear open heart surgery should you end up having to go that pathway. Anyone would fear it, of course, but the risks vs the benefits far out weigh not having it in the end. I hope you will come back and share your experiences with the Camzyos group. I think the one thing we all have in common is the wonderful feeling of getting your life back. HOCM takes away so much of what we can do, and when you get it back you realize how bad you were before surgery or Camzyos.
You mention you just started Camzyos today, when do you follow up with your cardiologist next? Is your cardiologist specialized in treating HOCM?

Hi Mary, I am scheduled to receive my first 35 day supply today. So I will be starting probably Saturday. Yes, there is still some reluctance/procrastination; I want to get some blood work done before I start to give me a baseline.

I have really been afraid to take the drug. But, this group has been a godsend. It has provided first hand, unbiased information, and given me the comfort level to move forward. I hope it does the same for you. The drug is not for everyone. But, I pray it works for us.