Anyone take new drug Camzyos (mavacamten) for HCM?

Congratulations @nbs You are blessed that it’s working so well for you.

Update: I am now in the next phase of taking Camzyos. My third echo while on the drug came back fine - LVOT 25 (from originally 101) and EF 75. I will be receiving a 90 day supply of Camzyos and have my next echo will be in three months (unless issues occur). Over the past years I could barely tolerate summer with its heat and humidity and I stopped going outside as the day progressed. I am very fortunate to be responding so well to this drug as I can be active outside any time of the day.

@whidbey, that must be a lonely feeling not having the support of a nurse navigator or specialty pharmacist to talk to when you just began a brand new drug. Being so new on the drug seems like you should have close follow up and easy communication, especially regarding drug interactions. Are you able to contact your doctor about this? It seems like a serious issue, and warrants closer medical supervision. You only recently began the Camzyos treatment...I just can't imagine you would have no way to communicate side effects to your physician. Is your cardiologist familiar with HOCM and Camzyos? @kelliw has an awesome champion cardiologist who has been so supportive of her and went to bat for her when she was told to adjust her medication. I mention this because you have to be your own advocate sometimes. Not everyone has a super star for a cardiologist, and they have to fight for themselves. @jaymaysea began Camzyos recently and had issues with adjusting meds too. Please be sure you are being heard. It is important because this is a new drug, and you need to be followed closely. I would encourage you to contact your doctor. May I ask where you live?

Thank you for your response. I do not have a nurse navigator. I have appreciated reading this Mayo clinic blog.

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?