Your Experience on Camzyos first month?

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! 🙂

Hello @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.

Thank you all for your great information...I will start taking it at bedtime. SOB has gotten better, and my doctor recommended I get a pulse ox monitor. Which I did. This way I can make sure my oxygen is staying strong. Good to know others have issues with their stomachs and the med. I had noticed some nausea and constant belching. I am remaining patient, but in the back of my mind it keeps playing "what if this doesn't work". I need to stay positive and refrain from the negative thoughts. As you stated I have been dealing with HCM for a while now, and I was always pretty much asymptomatic. I guess it is getting a little more real now that it is impacting things I do. I like this forum, thank you all again for your help, advice, and friendship in the HCM world. I hope everyone has a wonderful Spring, a time for new beginnings!

Hi, snewbrough, and welcome to the group.

Sorry that you're having to deal with all this.
Starting on the Camzyos I had questions too, so totally understand what you say. Glad you found this forum. I too have found people here so kind and helpful.

I was diagnosed HCMo in June 2025. I started on 5 mg of Camzyos in October. Took it evenings after dinner. No stomach issues for me. Within 3 weeks my SOB on exertion was somewhat better, I was able to walk with my peer age group friends and not constantly have to stop to catch my breath as long as we were not going up hills. My next Echo showed improvement in gradient so med was reduced to 2.5 mg, ; and on that lower dose my SOB got back to what had been my baseline within a week, and was that way for about 3 months. Recently my SOB seems to have gotten better again, back to the improvement I had in late October, yay. Able to keep up with peer group friends as long as not going uphills. - I'm also taking Wegovy, and have lost about 15 lbs, so perhaps that is helping with the SOB? Or is it the Camzyos that's helping w/the SOB? or both ? I still have daily episodes of tiredness afternoons,- is this from the HCMo? the Camzyos? the Wegovy ? not sure. I just have to lay down and rest, have a timeout.

You mentioned anxiety, and I think it's hard to become symptomatic, to have palpitations and not be anxious. And then who wants to hear that we have any anomaly of your heart? It's a lot to absorb that the septal wall is thickened, and not to know where exactly things are going. I think that we all might be anxious for at least for the first year, if not off and on ongoing? Staying positive as you say, and refraining from the quicksand of negativity, and all the "what if" doubts sounds like it's working for you. Those same things work for me too, as well as staying in the moment, & when possible , acceptance for things that are hard, including the not knowing,

Don't hesitate to ask your cardiologist, or their nurse your questions. We all have concerns and questions with new meds and changes in symptoms, side effects.