Anyone take new drug Camzyos (mavacamten) for HCM?

He doesn’t have a certain time frame to try the Camzyos. Says it’s up to me how long I want to stay on it as long as it’s helping. It is helping. My heart is better and better. Just looking at the long term. Having to stay on the medicine long term and dealing with then side effects I’m having. Knowing my heart is getting better but I don’t get to feel the benefits because of the dizziness and palpitations I have as side effects.

Hello @tjunca, and WELCOME! I'm glad you found Mayo Connect and have shared your story with the Hypertrophic Cardiomyopathy group. The Camzyos folks are a wonderful resource as each one of them, like you, are brave for trying this new drug and for hoping it helps them live better lives with HOCM. I encourage you read the shared stories and reach out if you have questions. No two people are the same, and therefore, no two results will be the same either. Camzyos is a magical medication for some, and for others it's not helping, it may even hurt them. I'm glad to hear you have consulted with the Mayo Clinic. I did, and it made all the difference in the world to me. I had open heart surgery a few years ago in Rochester and have my life back thanks to the stellar care, expert medical advice and top notch surgical skills offered at the Mayo. Mayo Clinic has the world's top HCM doctors. How long does your cardiologist want you to try Camzyos?

I am 51, diagnosed with obstructive HCM first of this year. Been on Camzyos for 6 months now. I Was also my cardiologist first patient to be on it. Side effects have been the biggest issue. I’m getting better. Have Echo done every 4 weeks. Every echo shows improvement. Problem is, I am improving but the side effects prevent me from getting to feel any better. Side effects are same as what I was experiencing from the HCM before diagnosis.
I’ve consulted with Mayo Clinic and considering surgery. A lifetime of Camzyos knowing my heart is better but never getting to enjoy the benefits is no way to live.
As far as cost. Camzyos does have a program to help with the 8k monthly cost of medicine.

This is why I call it a Family. Thank you for taking the time to give me more insights.

You have such a great outlook @jaymaysea. I know this must be difficult for you not getting the response you hoped for. Naturally I am biased towards the Mayo Clinic, but Cleveland Clinic is top notch as well, and being seen by an Center of Excellence is like no other experience. If you can, I would encourage you to do just that! I have shared my story about being misdiagnosed for several years, and finally going to Cedar Sinai and Mayo for HCOM diagnosis. The Mayo did two things that made me choose them...they ordered a plain old chest xray, and they did a simple lab BNP. Cedars didn't do that, only a fancy echo. It showed my heart was failing. That scared me! So open heart surgery it was. Now I want to share with you another story to maybe help you decide about a COE visit. I have a friend in Washington. The State, not D.C. 🙂 She was diagnosed by her cardiologist with RIHD, Radiation Induced Heart Disease. She had breast cancer and had radiation to her left chest. Years ago. She was told she need surgery, and her valve was bad too. I encouraged her to get on Connect and learn as much as she could. She didn't, but that's ok. She told her doctor about Mayo and being a Center of Excellence and he had no idea what she even meant, and said Washington State was a top leader in whatever it was she had. So two months ago she underwent a TAVR. She was feeling better, but not really. He started doing more tests. He was confused and had no idea what she had, because it was not RIHD. She did not need the TAVR. More research on his part and she now is diagnosed with amyloidosis of the heart. I have given her the information to sign up with Connect and I think she is now. And she is also planning to come to Mayo for a second opinion. She had surgery for something she didn't need!! Her doctor was stumped but his ego kept from sending her to a COE. Just a little side note for you to think about. Your health is your greatest gift, and it's so important to do all you can. I would go with you to Mayo if I could!!

Thanks Debra. My next echo is October 30th. I am thinking of going to Mayo or Cleveland to get another assessment. We will see. Trying to stay positive.

Great response @jaymaysea! Thank you for sharing that...it's not all sunshine and roses, and you and some others have had a rough road to travel on. Thanks for letting @boatsforlife know how important it is to be your own advocate too. And the drug interactions! That's important. I was like you...little gradient at rest, huge under stress/exertion. If you didn't push for yourself and let your doctor follow protocol, then who knows where you would be right now. People are unique and different, they are not algorithms like you so eloquently stated! I hope you get continued improvement. When is your next echo?

Welcome to the Family boatsforlife! I think you will find this is an amazing group that will support you in your journey. I came to the group when I was trying to decide whether or not to take Camzyos. It is because of the comments from the people here — factual and spiritual — that I decided to move forward.

My journey with Camzyos, in terms of results, has not been as life transformative as some of the others here. I have been taking it 111 days today; 3.5 months. I still experience shortness of breath upon exertion, but not as badly as before. Now, my heart rate is often high even when I am sleeping, which did not occur before I took the medicine. My cardologist insists that it’s not because of Camzyos. I still experience angina occasionally.

My cardologist is a divo. His word, I refer to his as a rockstar, because after years of being misdiagnosed he found the problem and prescribed Camzyos. But, I have had to battle with him a couple of times. He dropped me from 5mg to 2.5mg after the first month because he said the algorithm said he had to do so. But, because of information I learned here I knew that was not the case. He still dropped me; but, after reminding him that MY obstruction was negligible during rest but through the roof during exertion, he agreed to another stress echo rather than the limited ego that is done during the first 4 months on the drug. The result, he took me back to 5 mg. The morale of this story is that YOU have to be your best advocate, YOU are not an algorithm!

Also, make sure you know what you cannot take and can take with Camzyos; many things are counter indicated. Things you might not think of like grapefruit and some allergy meds.

Bottom line: This drug is not for everyone; people respond differently. So, be diligent, ask questions, listen to your body, have faith, and stay positive!

Do you see what I mean @boatsforlife? What a wonderful support group this is...I love how people reach out to offer hope, share their journeys, or virtually hold your hand and cheer you on. I hope going forward you get great results with Camzyos too. @hansj is another fellow Canadian who just began Camzyos not too long ago, and perhaps reading his story will encourage you as well. Every person is different, and no two Camzyos journeys are alike. Some are similar, some are disappointing, but having this group to bounce thoughts off of is a blessing!

Heck yeah! 81. Fighting off heart issues. Fought off surgery. Fought off cancer. Fighting off HCM with a brand new drug. And still with a positive, thankful attitude? I wanna be just like you when I grow up!