Anyone take new drug Camzyos (mavacamten) for HCM?

Hello @chris7121 , welcome to the HCM support group. I am not surprised by your comment that it took forever for your husband to be diagnosed. That seems pretty common for most of the HCM community. It took years for me as well, and I was 61 by the time they figured it out. It took two trips to two different Centers of Excellence (COE) for that to happen though. This is something that a lot of cardiologists are not familiar with, hence the difficulty finally getting the truth. I had to have a septal myectomy, done at the Mayo, but this new drug is showing a lot of impressive results for a lot of people. Not everyone will tolerate it, sadly, but so far it seems for the majority posting here, they are so surprised by how fast it works, how good they feel, and how impressed they are with their results. I encourage you to poke around here on Mayo Connect and educate yourself as much as possible about HCM and HOCM. The Mayo Clinic is a COE and leader in treating HCM, and you can find a ton of information about this disease. Knowing that this is genetic, and is passed by a parent can perhaps make you wonder, if you have children, could they have this too? Or could another relative have it? This is a wonderful supportive community and you have come to the right place for questions, support, and to know you are not alone. It is really important that you learn as much as you can so you can be you and your husbands advocate. When does your husband start taking Camzyos? Is his doctor knowledgeable in treatment of HCM or does he/she have a trusted expert to consult with?

I would really like you to know how much I appreciate your comments about this medication. My husband has HCM. it took forever to get this diagnosis. Hopefully he can get relief from his symptoms once his cardiologist prescribes this.

Glad it’s going well

Day 11
5mg at 0807am
Weight 265.4
Sooo last night I had a sugar craze ate a bunch’s of those Costco cookies..:(
20oz of coffee and a 16oz sugar free monster for breakfast..
still no side effects…
Mom came by today do for lunch I had a couple more of those cookies “damn you Costco bakery”!
Dinner was a 20oz ribeye med rare, Murphy had some.. also a 28oz Gatorade zero…
500mg metformin..
Oh and a medium avacado…. I’ve got a hearing with the VA judge tomorrow so I didn’t start my work out..I’ll start tomorrow after the hearing.. this is really the first time I’ve set an alarm to take a medication every day either 5min day to day..
And for those of you that wonder..you all of a sudden start wanting to be active, I guess because you’re breathing more normal and the heart pounding in your chest isn’t happening at moderate intensity activity, I’m walking more, picking up the house more, fiddling in the garden.. it’s nice..
I’ll hollar at y’all tomorrow
Dave 🙂

Hello @giselad, welcome to the Hypertrophic Cardiomyopathy support group. I see you introduced yourself in another post, and I am glad you are here. The new drug Camzyos is certainly creating a buzz in this community, and it looks like you were one of first folks in the Bay Area to be trialed in the beginning. And it sounds as though you are doing well on it. Sadly, not everyone will share your same experience, as we are all so different as individuals. No two alike! Since you have been on it for some time, you may have different experiences to share with the others who are just getting started. I hope you take some time and read some of the information on this site...it's full of thoughtful, interesting and helpful information. Have your symptoms of HOCM decreased? Have you had any side effects, such as dizziness, like many here have experienced?

Yes, I am taking mavacamten and am quite pleased with the results.

Gisela

She is ready for the septal myectomy. The camzyous did not work on her.

Hello @dbrima and welcome to Mayo Clinic Connect. I am so sorry to hear of your daughter's reaction.

I wanted to bring you into an existing discussion on Camzyos, so you will notice I have moved your post here:
- Anyone take new drug Camzyos (mavacamten) for HCM?: https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/

Several members have joined you. What is your cardiologist saying about how your daughter is reacting?

Thank you. I am terrified and no one will discuss the possibility if things go wrong. This was my little girl with hopes and dreams. As soon as she found out she has a heart disease, the rocket scientist left. He wondered how he could ever hike again. Neither ever hiked. It shows his true grit. He said my heart is mine and yours is yours, but I still have a duty to live. The divorce with custody of a 5 year old autistic child took everything out of me, until this presented itself. It’s true, with health you have everything. It doesn’t come to heart until it travels your way or to a loved one. Sad thing is, he does the minimal, gets 47% custody, but won’t help his son by babysitting. The kid is traumatized and he thinks he would be helping me. No emotional support for a worried child. Big mess here

It’s day 10
Weight 266
5mg @ 0807am
No side effects
10oz coffee
12oz Fresca
4 gigantic Costco cookies lol
(I couldn’t resist)
Lunch was a avacado cheese taco with a carbless tortilla..
Dinner is gonna be a ribeye with
500mg metformin..
I had quite a long walk from the end of the Costco parking lot which would normally leave me breathing hard, not today..as a matter of fact . I’m definitely noticing that I’m not so out of breath..noticeably..
I think it’s gonna all be okay..
Until tomorrow troop on my fellow Camzyos users..
See you tomorrow
Dave