Anyone take new drug Camzyos (mavacamten) for HCM?

Thank you @kelliw. You feedback is always so helpful. Did you experience any negative reactions to taking both. Were you taking it before you started Camzyos?

I was taking it before I started Camzyos. It was one of the things my doctor tried before he learned about Camzyos. He started me at 25 mg, then bumped me up to 50 and then 100. I got very dizzy when he upped my dose to 100mg. So he brought me back down to 50mg. I have not had any negative reactions taking both. We discussed if I am going to continue taking it and for now I am. I take it in the morning with Camzyos and Atorvastatin. He said for now he wants me to continue with the Atorvastatin as well.

You need a weekend away from all this hoo-ha! Enjoy your time. I hope they get this all straightened out for you...it's got to be stressful wondering and worrying if this is going to work or not. You hang in there too!

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.

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?

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

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?

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?

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.