Connect
Your Experience on Camzyos first month?
I am 63 years old and have been diagnosed with HCM since my late 30s/early 40s. On a beta blocker with not symptoms other than palpitations. Just recently started with SOB, and exhaustion. Echo showed cardiologist that thickening was worse. So here I am choosing Camzyos over other options. Been on it for a month, and had my first follow up echo. It was worse than the previous one, but cardiologist said that sometimes happens. When I first started taking it I noticed marked improvement in my SOB, and no more palpitations. Now further down the line, SOB comes and goes. I don't know if it's anxiety that makes me SOB or is it getting worse? I have not other symptoms? How was your first month on the med?
Like
Helpful
HugInterested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
Connect
Hello there...First month was Oct 2025...5mg...I was good for the first two weeks then started spinning like I was in a clothes dryer! Switched taking the 5 mg to bedtime vs. morning...much improved the dizziness. Echo showed improvement and so doc lowered it to 2.5. Blood pressure went low and heart rate went high so we are adjusting my blood pressure meds. Much fatigue and stomach pain after most meals. Good news...I am feeling slightly better each day. BP's are more in the normal range, HB getting a bit slower, less stomach aches, holding onto my energy a bit longer each day. I have hope! Best wishes to you...one day at a time...you can do this! 🙂
-
Like -
Helpful -
Hug
1 ReactionHello @snewbrough, and welcome to Mayo Clinic Connect.
It sounds like you are getting progressively more symptomatic with your HCM, and taking Camzyos has helped to a degree.
I am not an expert on Camzyos, but the Camzyos group is full of helpful folks, many new to Camzyos and others long-term warriors.
You've received one helpful post from @christine270, and hopefully others with experience will pop in here and share some of their personal journey.
Have you had a chance to read some of the Camzyos groups stories?
Member @boatsforlife has a boatload of sage advice and wisdom that comes from experience. Take a look at some of his posts...
Have you had a second opinion?
Have you read up on HCM?
Here's a handy link:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Welcome @snewbrough
Gosh, now I have to live up to "sage advice and wisdom"? No pressure - thanks a heap @karukgirl ! 🙂
I've posted at some length about my Camzyos journey, so I won't try to replicate all that except to say that I was very lucky and had zero negative effects, and within 12 days ALL of my previous symptoms had vanished. What I will say though, is to try to be patient. You've got more than 20 years of HCM, and it may take a few months to untangle it. A lot of meds need to get dialled in before the dosage and interactions with other meds are optimized - that's not unique to Camzyos - and that trial and error takes time. Also, right from the start, it was recommended to me that I take the Camzyos at bedtime so that if there were any dizziness kinds of effects, they would happen more while I was asleep. Best of luck in the process, and keep asking questions and posting updates. They may not know you personally but the folks on this forum are a caring bunch.