Anyone had to go off mavacamten ? Any side affects after stopping

just curious, what was the reason you were taken off the medication?
how are you feeling? And did you notice any difference when you were on the medication?

Sadly they didn't work for me. Did not improve breathing or tiredness had a full cardio echo no improvment condition still progressing no improvment was shown so my cardiologist took me off them . I also was quite off balance most of the time dizzy
Have to go back 6 months.

thanks for the info. hope you’re feeling ok.

For me developed Atrial Fibrilliation which I have never had before...he ho such is life!

Why were you taken off the drug if I may ask? Hope you are feeling well.

Sad to hear that for you hope it settles down . Look after yourself

That happened to me too. I was on for a year and had no benefits. Had a septal myectomy and not sure why 9 months later I have started to feel like there is no room to breathe. I had no side effects getting off. I felt worse on camzyos. This is such a journey!

Thank you Maree, the A Fibrillation appears to finally be subsiding after a month. Prepared for this Camzyos since last November/Dec tests etc so a huge disappointment not to be able to take it but delighted for the ones that can do so. Looking at septal myectomy soon ish.,

Yes indeed it is. Do you feel better after the septal myectomy? I do hope so. How long was the recovery and was it minimally invasive? Keep well.

I did feel better but just learned late yesterday that my bnp is up. I am doing an echo in 2 weeks because I am in heart failure again. I hope there is something that can be done. I did camzyos for a year and then the septal myectomy. Only 34 with a young son.