Anyone take new drug Camzyos (mavacamten) for HCM?

I will. Thanks for your wonderful support!

Your daughter and you will be in my prayers. My heart aches for you both. I see you are a spiritual person. So, try to maintain your faith. I know that is easier said than done right now.

Has your daughter stopped taking Camzyos? I don’t know what her condition was prior to taking the drug; but, I hope it did not make her worse.

Try to get her the very best medical treatment possible. I too live in a major metropolitan city. But, if I do have to have surgery I intend to go to a Center of Excellence, a place where they do hundreds of the type of surgery that is needed not a dozen a year.

I have not been part of this support group very long. But it has given me a lot of comfort. I am still afraid of Camzyos. But, I decided I will try it first before pursuing surgery. I encourage you to use the group to ask questions. It helps.

Thank you for your kindness. She is still on the drug. It has reduced her gradient to 0 at times, yet the gradient keeps going up and down. It’s all over the place. She has echos monthly. She got diagnosed 5 years ago after a pregnancy and something happened after year 4 where the gradient was at 100. Today, it is at 80. Last month it was at 4. In other words, it hasn’t held at 0. Yet, her left ventricular has remained think and so even when the LVOT was at 0, she still felt no relief. Her entire body aches, but she just came out of the hospital today. Her potassium was at 1.9. We don’t know if ivs of potassium will reduce the pain. For my daughter, who has been on camzyous for 8 months, there has not been an improvement. Her cardiologist has a patient who is currently doing better. It may be a journey each person has to decide to take. There is a small feeling that we wasted time and her condition has worsened and maybe the septal myectomy should have been done months ago. We will never know and of course, I do not know about her results with the surgery. She is being measured next week to see if she qualifies. Her thickness may be too deep to qualify for surgery, then that is a whole other terrifying topic.
I hope your journey goes well. Thank you.

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

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

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?

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

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

Gisela

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?

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 🙂