Anyone take new drug Camzyos (mavacamten) for HCM?

Salve a tutti aspetto da tempo questo farmaco in Italia,se ne parla ma con costi proibitivi,affetto da cardiomiopatia ipertrofica ostruttiva diagnosticata nel 2009

Hi Deanna,
Sorry to hear of all your symptoms on Camzyos that’s annoying when for some it’s a miracle. What is the measurement of your thickening? Mine is 1.7 mm I believe but getting more symptoms now than before. Not terrible but fatigue after eating and slight dizziness. Not sure which way to go and hate the thought of surgery. All good wishes to you on your journey.

I was told by Dr. office that Coricidin R. I couldn't find such a thing so CVS Speciality pharmacy said that the ingredients in "coricidin HBP(high blood pressure) was ok. It knocked me out so much. I couldn't stay awake. Now struggling with a cold and cough and am dizzy and weak.

Nobody ever told me that.
So I would check with your cardiologist.

I developed a metal taste in my mouth, burning mouth syndrome, and chronic lingual papillitis. It triggered a lot of things that I have never had before. It was all reported to Bristol Meyers Squib. I am still suffering. ;-(
Half-Life of Mava is 6-9 days.
I had a septal myectomy in 2017. Evidently, they didn't or couldn't take down the bottom of my heart enough. So I still have an obstruction. ;-(
Aficamten is not approved yet in the US so I am in a clinical trial. I believe I am on the placebo of metoprolol. After the trial is over I suspect I will go on Aficamten. Good luck to you whichever way you go.

Has anyone been told what over the counter remedies (for colds, headaches, muscular aches,etc) they can take while on Camzyos? Good health to you all.

Hi Deanna, so sorry to hear you came off Camzyos. May I ask what your symptoms were? I felt great on it for a couple of weeks but had to stop also of side effects sadly. Does anyone know how long it takes for the drug to come out of our system. Aficamten I don’t believe is here in the U.K. so am thinking of a myectomy.
Thank you, wish you all the best.

After 6 months on Mavacamten, I decided to quit. I had side effects triggered by the meds. Too coincidental for me to continue. I am now involved in a double-blind clinical trial for Aficamten. So far no side effects except for tiredness. Which I have always had.
Best of luck.

How was it for you?

I do... been on it 5 months and I love it