Anyone take new drug Camzyos (mavacamten) for HCM?

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?

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

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?

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?

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.

My appointment ran 2 hours. My LVOT is 6 now, before taking Camzyos it was 12 resting and between 100 and 140 during my stress test. My ejection fraction is 55 to 60. It was 65 to 70 before I started the med.

I am still experiencing shortness of breath, fatigue, intermittent angina, and a high heart rate (in the 90), averaging in the high 70s even when I am sleeping. So he ordered a stress echo since the normal limited echo does not show an obstruction; but, upon excretion, there is a severe obstruction. Probably why I have been misdiagnosed for years.

I am in my 7th week. He is still hopeful that Camzyos will start to give me some relief. He talked about putting me on a very low dosage of Metoprolol to slow down my heart rate. We decided to wait until after my stress echo. I am still at 2.5mg of Camzyos. Lost the battle, but hopefully I win the war.

I am staying positive. I am going to Austin today for a Ladies weekend. All of the activities are inside. It will be interesting to see how much I can do.

Hanging in there everyone!