Anyone take new drug Camzyos (mavacamten) for HCM?

Hope It works for you

Thank you. I will look at Mary Ruth’s product.

Wow! You've had quite a year so far! How scary that must have been for you. We may never know all the effects of Covid and the aftermath of its course. I hope you are doing better now, and that the sleeplessness issue can be addressed. Not being able to sleep is awful...I know people have all sorts of different things that work for them, but not all things work for all people. For some melatonin helps. I did not like it at all and won't take it. I have tried Mary Ruth's liquid nighttime multi-mineral product. It does something, but I can't really say what. That sounds strange, but it works on some level. It's a bit pricey even on Amazon.
Hopefully either the Camzyos reps or your doctor can address your insomnia.

I got Covid in January, 2023. I then had a heart event and had a stent placed on 2/6. Afterwards, the doctor diagnosed HOCM. He eluded to the fact that I had a milder case before Covid and that the virus has exacerbated my previously diagnosed condition.

Hi there @8leonard. I'm so glad you found the Camzyos support group here on Mayo Connect. I can't speak to your comment about starting Camzyos and now having insomnia, but maybe someone else in this group will respond in time. There seems to be wide range of experiences people have while taking this new drug. When did you learn you had HOCM? Were you diagnosed with any other heart issues before HOCM was found to be the culprit?

Hello @whidbey and welcome to Mayo Connect. @kelliw is a Camzyos champion and her advice is spot on! I hope you are able to contact your doctor or as kelliw mentioned the specialty pharmacist or nurse navigator for any concerns. This is a new drug and every person is unique and will have a different response. Some it seems respond quickly and others take much longer to see results. I have no experience with Camzyos as I had to have a septal myectomy. But I can tell you this much, this group of Camzyos people are amazing! This group is very supportive of each other and willing to share their experiences in the hope that it helps someone else. How long have you known you had HOCM? Is your doctor specialized in treating HOCM?

I started taking Camzyos on 7/26/23 and now I’m suffering with insomnia.

Good morning-I hope you start to feel the benefits of Camzyos soon! I have called the specialty pharmacist or my nurse navigator any time I had a question about a drug interaction, even for over the counter products. They are easy to get ahold of and very helpful. I think we need to be really careful about drug interactions. I am sorry you had that experience!

I have been on Camzyos 5 mg. 6 days now and have no improvement. I was on Disopyramide. I took naproxen and Dramamine for a migraine yesterday and had a bad reaction to those two drugs and was not warned about them. Has anyone else had a reaction to other drugs while on Camzyos?

Thank you. Very good to know. My heart rate has really been elevated today, averaging in the 90s all day. So my Dr. may add it to the list. Stay well.