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Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
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How was it for you?
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1 ReactionAfter 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.
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1 ReactionHi 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.
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.
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.
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1 ReactionNobody ever told me that.
So I would check with your cardiologist.
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.
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.
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
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Ciao @giolig68 e benvenuto a Mayo Clinic Connect! Mi Italiano est molto bruto! Io capsico un po, io non parla l'italiano!
Grazie per translation!
I am so sorry to learn from you that you have HCM and are unable to obtain Camzyos in Italy. We know that other medications, such as beta blockers or calcium channel blocker only help with symptoms, and they barely even do that...so it must be frustrating to here of Camzyos and not be able to find or afford it. I know nothing of how the Camzyos program works with Bristol-Meyers, but it sounds like from others here in United States and Canada they have been approved on the program that funds the drug costs for them. Is there anything similar in Italy you can find through the drug company, Bristol-Meyers? Where in Italy do you live? Are you near a Center of Excellence?