Is Camzyos effective long term?

Hi all, I've been on Camzyos since March 2023, so a few days short of a full year. I wouldn't let one bad day worry you. Like everyone else I started at 5mg and did great. The protocol required a drop to 2.5mg and I gradually went downhill over a few weeks. Back on 5mg and I've been doing great ever since. That's not to say everyday is perfect, every once in a while (6-8 weeks?) I have an "off" day where it seems the symptoms are back, but I know to just take it easy and not push myself on those days until I'm back to feeling great (which is most of the time).

Such good news to hear of your experience.
My cardiologist has kept me on 5 mg now and will keep me on that dosage until my next echo end of May.

Just last week though I felt quite poorly and after an ECG showed I was in atrial fibrillation, my cardiologist performed a cardioversion procedure.
Back now on Sinus Rhythm.
Heart Rate not great after the procedure; verging around 50 so lack energy,
but not in atrial fibrillation any longer which is a relief.

Good morning! I haven't posted in quite some time because I have been so busy-which I am SO thankful for! I started Camzyos a year ago, about the same time as Hans, and am so very thankful to have my life back! I am able to do anything and everything I feel like doing-walking, playing pickleball, golfing, anything!! I have lost 30 pounds and am continuing on with the weight loss. Camzyos has been an absolute game changer. I started out on 5 mg. and then was changed down to 2.5 mg, which I was not happy about because I was worried I would start to not feel as good, but I am still doing well on 2.5 mg. My cardiologist did say, at my last appt., though that if something didn't change-I can't remember what it is- he may put me back up to 5 mg. but he is really happy with my results too. Yippee!!!

greetings - I am new member here and currently dealing w/obstructive hypertrophic cardiomyopathy so my cardiologist started me on Camzyos (almost finished with 3 months) and getting echocardiograms every month. has anyone had a high gradient number? how about ejection fraction? thanks in advance!

Hello there @yayee, and welcome to Mayo Connect. I'm glad you found the Hypertrophic group. Have you had a chance to poke around on here? This is a link to the Camzyos group, where you will find a ton of information shared by others just like you who are also on Camzyos. https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Everyone is unique and each one of us reacts to things differently, but learning as much as you can about your condition will help you help yourself and your doctor.
How long have you known you had HOCM? Have your echocardiograms shown improvement? Do you feel better than you did before you went on Camzyos?

Hello @yayee, I moved your comment to an existing discussion on Camzyos and its effectiveness long-term, titled "Is Camzyos effective long term?" - https://connect.mayoclinic.org/discussion/is-camzyos-effective-long-term/.

@kelliw, @par4rosy, and @hansj have all recently posted updates about their experiences on Camzyos.

@yayee, how are you tolerating the medication?

Good morning! People have asked me if I will be on this forever and I hope so, as it helps me so much, but I don't know. Since it is so new, I am not sure if anyone knows. I hope your cardiologist can figure out how to help you, @par4rosy

Good morning, Hans! My doctor and I have been talking about putting me back up to 5 mg too. One of my levels has elevated a bit-how hard my heart is working, in the middle-can't remember right now what that's called-so when I go back in August, he will see if he is going to raise Camzyos mg. again, or keep at 2.5. I feel fine, but remember how great I felt on 5 mg. so we shall see... So happy you are still doing well too! 🙂

Good day
I started on 5 mg of Camzyos in December 2023. I really felt well with this new medication and my results proved likewise. Following the protocol, my cardiologist reduced my dosage to 2.5mg. However I was not feeling as well as before, on the halved dose After three months on 2.5 mg and the echocardiogram, I requested that I go back to 5 mg, which the cardiologist agreed to. I am still overwhelmingly tired and some days are worse than others. My shortness of breath has improved but not the fatigue. I’ll see if the 5 mg which I just restarted makes an improvement. I too have no idea how long I can stay on this drug, and if the dosage needs
to be periodically increased.
Be well

After FDA approval, camzyos has only been available for 2 years and 1 month. The approval required a lot of testing due to the side effects can be too risky for some people. I do not think anyone other than a Cardiologist with that much 2 year 1 month experience on this medicine can accurately predict how long it will take. The pressure, the size of the septum and other factors in each one's hearts is very different and unique. So I do not think anyone can predict how long it takes unless there is someone who was treated and successfully say " I took camzyos for .... years or months and I do not need it anymore". All I know is that this medicine is wonderfully working on me and I am willing to take it till my last day on earth. I hope everyone is successful on this camzyos treatment. I am very happy with camzyos.