Anyone take new drug Camzyos (mavacamten) for HCM?

Hello @annd, and Merry Christmas too!
Welcome to Mayo Connect, I am so very glad you are here. Like @jaymaysea says, and I echo...fear is something that would be normal for anyone who hears they need to have open heart surgery. Everything we do has the potential to have a negative outcome...driving a car, walking down stairs, going to a crowded concert...but we get to decide what we will do and assume the consequences.
I admire your perspective. How you are willing to to consider open heart surgery. It is scary. I admit that. And I would have done anything to avoid it. I was too late for the Camzyos trial, the usual meds were not working for me, and I could have just said this is okay for me. To live a half of a life. I had lost so much I cared about and could no longer do.
But when I look back I realize I had God by my side and that gave me great peace. It didn't hurt that I was in the BEST hospital in the WORLD either! This is a surgery like none other and you need to be in the excellent, capable hands of superior surgeons.
When I think about where I was before surgery, I wonder how much worse I would be today had I not chosen to take a chance. It felt like a chance, but in reality, it is a straight forward procedure, nailed down to the minute deals and perfected beyond belief at Mayo.
I will be so glad to help you with any questions or thoughts you care to share. Mayo Connect is a wonderful forum to share with others just like you and me. I wish you a Merry Christmas, and before I press "reply" do you have a good cardiologist on your team? One who is up with HOCM?

Jess: I am a 73 year old male with a long standing diagnosis of Obstructive HCM. Over time my HCM progressed and I experienced the expected symptoms and clinical data of progressive heart failure. I am otherwise in generally good health, but my heart condition required significant and frustrating adjustments to my activities of daily living.
GOOD NEWS! I began Camzyos in May 2022. After three daily 5mg doses all symptoms were gone. I thought it was psychosomatic! Now after 7 months all is still excellent and after a couple of months the dosage was reduced to 2.5mg daily. I have been under a very strict protocol of monitoring and testing (MD visits, echos, and EKG).
Camzyos does not work for everyone and might he dangerous for some. But it is worth a try under expert supervision and careful follow up.
Camzyos has been a life changer for me! I can only thank God, my cardiology specialist in HCM, and his team in Memphis, Tn. And, the increadible brains that invented this new drug!
Peace!

I’m appreciating the courageous fellow ‘HCM’ ers who are having heart surgery. Thank you sharing. What I’m faced with is a total knee replacement because of extreme pain with walking, driving, sitting to play piano or just for a meal etc. I’m very concerned that my heat will misbehave under anesthesia now that I’ve been diagnosed with symptomatic obstructive HCM and am on Camzyos (which our local rural docs are not educated about yet). I may have to travel to UCSF (about 275 miles from my home) to get it done. Anyone else out there in a similar situation? I’d love to hear how you did undergoing anesthesia.

HI Jess, Thank you for sharing. I am 54 years old and I too started taking Camzyos in June 2023. It has done wonders for me as well. I started at 5mg and was increase to 10mg after 3 months f close monitoring. I have been able to go back to my normal way of life without any complications. Like you, it has changed my life as well.

Hello dear people and fellow sufferers from Germany.

I will probably finally embark on the adventure with Camzyos in January. I have OHCM with a wall thickness of 27mm. I am too afraid of surgery, so I would like to try the medication instead.

Perhaps someone can answer my question: Currently, I am on the maximum dose of beta-blockers. Is there a chance that if Camzyos is effective, I can discontinue the beta-blockers? I am just under 50 years old, but my love life resembles that of a 95-year-old. 🙁
And I feel, that they change a bit my personality. I used to be quite fearless. But since taking beta-blockers, I have become a little girl. Hope you know what I mean, I don't want to be disrespectful to anyone.

Hi there @newtosochm, you ask a valid question.
I can share my experience with you. I had been misdiagnosed by my cardiologist with four different heart conditions before finally being diagnosed with HCOM in 2019. In 2015, I had to have a hysterectomy. I was in a really bad way and it was more than necessary. My doctor had me in for a pre-op visit. She listened to my heart and literally pushed herself away on her little rolly chair and exclaimed in shock there was no way I could have surgery. I had told her I have a mitral valve prolapse and a murmur. She said no anesthesiologist in town would put me under with a heart that sounded like that. My surgery was the next day. She made me go to my cardiologist and get a letter stating I was ok for surgery. I did.
The next day, in the hospital, the anesthesiologist came to my room for a pre-op visit. He told me he could not put me under, my EF and gradient numbers were terrible and I could die!
To say I was frightened is an understatement. My parents were sitting there with me and my mom was freaked out.
He told me he wanted to talk to Dr. Cardiologist first.
Then about 20 minutes later he came back and said Dr. Cardiologist told him I would be fine, just keep me super hydrated and that was it. Dr. Anesthesiologist wanted to err on the side of caution and he put in an arterial line to make him feel better.
I did fine! I had zero problems. And all this is before they even knew what I really had. I hope this helps you face your total knee with a little confidence. I share this to let you know that the medical team taking care of you will have the information they need to keep you safe. They would not operate on you if it was not safe. And I am far from a COE hospital too. UCSF is four hours from where I live. I hope this help you!

Thank you for sharing your experience. I’m hoping the anesthesia team at UCSF will be better equipped to deal with any cardiac issues that might arise while I’m under anesthesia having knee surgery than at my local rural hospital. It’s just so hard to make these important decisions without adequate information i.e. risks vs benefits of having surgery 20 minutes from home vs 275 miles from home (without lodging or transportation!)
But, I’m very glad you had a good outcome!

Good day. Could someone explain to me what the gradient readings represent?
Many thanks. Be well