Anyone take new drug Camzyos (mavacamten) for HCM?

I am jealous and so happy for you. For some, Camzyos is like a miracle drug. I am happy you are responding so well. Let us know how your echo goes.

My next echo is October 30th. I have been having some angina and I am still out of breath going up stairs. So, it will be interesting to see my echo results.

Stay positive and may your Camyzos journey always be a great one.

Hey @jaymaysea thanks for the encouragement. I'm way behind your curve at just 14 days now. After just a few days I felt like I was improving but figured it was all in my head. At day 9 I accidentally did 3 flights of stairs in rapid succession and felt ... NOTHING. No chest pain. No dizziness. No heart pounding. No shortness of breath. Just nothing. Previously a single flight of stairs would just about kill me. From day 9-12 it was the same. Not one of my normal symptoms. It was almost confusing not knowing what I should do at the top of stairs or whenever I would usually have to stop and wait for things to subside. But the last 2 days have been a little bit of a setback. I've felt a little bit of what I'm used to feeling. Nothing at all like it has been for the last many years, but not quite as great as the previous few days. I'm not worried about it (much) as it's still very early days. To be honest, I wasn't expecting to detect any positive change for a couple months, so this is all a bonus even with the tiny step backward. My first 4-week echo is scheduled for 23 Oct. @jaymaysea, I'll keep in mind what you said about advocating for a stress echo should that become a thing. Like you, my problem is under exertion, not at rest. I'll post again in a week or two or if I have a significant change.

Yes. He does. We’ve adjusted mg a couple times. Helps minimally. Dizziness is main problem. Near black outs sometimes. Makes me stumble. Scared to go grocery shopping alone.
He recommended I consult with Mayo Clinic and get all questions answered so I can make a decision when or if I’m ready for surgery.

That must be frustrating @tjunca, no wonder you are on the fence about which way to go! You get to decide your course, and it sounds like you have a really good grasp on your situation. It is too bad you can't enjoy the benefits of Camzyos. Does your cardiologist know how much the side effects are affecting your daily life??

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.