Anyone take new drug Camzyos (mavacamten) for HCM?

Good Morning HCM Family, I took my first Camzyos pill this morning. So begins my journey to a better quality of life.

I am currently on Diltiazem (240mg) which is one of the drugs that is usually not recommended to be taken with Camzyos because it increases the risk of heart failure. My Dr. wants me to continue taking the Diltiazem with the Camzyos for 14 days. Has anyone else had a similar direction from their Dr. regarding a calcium channel blocker? I am the “trust by verify” member of the group.

Hey @starbuck41 , what did you learn from the cardiologist after your last visit? How is Murphy? Is he keeping an eye on you?

Hi @avcowie, is tinnitus a known side effect of Camzyos? That would make anyone crazy 😮
I'm glad you are feeling better and see your doctor soon. Have you thought of the questions you want to ask the cardiologist? When is the surgery scheduled that you want to reschedule?

Hello @dbrima, I was wondering how your daughter is doing? Have you learned anything more from the tests? Praying for you both.

That is good information. I was also changed to 2.5. My LVOT went from 75 to 8 in the first 60 days. I started taking Camzyos March 31st. My doctor didn't say anything about staying at 20, or taking me off. I was nervous about changing to 2.5 from 5 because I was feeling so good! I am feeling good at 2.5 thankfully. I so hope I don't have to stop taking it and start feeling horrible again. I am so happy you are also feeling great! My 3rd echo is on the 19th, so we shall see...

Good morning! I take it when I first wake up. That has worked out great for me. 🙂 I am excited for you to hopefully feel so much better!

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