Anyone take new drug Camzyos (mavacamten) for HCM?

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

Hello….I have been chosen to be on Camzyos since the 22nd November by my new cardiologist after a cardia event. I am in Northern Westchester NY. My cardiologist is working through a cardiologist in Long Island New York.
I had a zoom interview with the second cardiologist and was accepted as a viable candidate. I received my prescription by UPS only. I am interviewed by a drug company rep each month before my Camzyos is sent.
Only30 pills are sent each month
Within 4 weeks my HCM was gone! The valve was totally functional and the thickening of the septum was reduced to allow the valve to function properly. A heart murmur I’ve had since birth has completely disappeared. as well.
I am still suffering from extreme fatigue and find I often run out of breath. These things are very frustrating for me. I do not ever have chest pain, even though I had a heart attack and subsequently a stent placed.
This medication is a medical miracle but I’m still waiting to be rid of the fatigue and loss of normal breathing.
Perhaps someone reading this, who has been on Camzyos for a time longer than 4 months, can help me with their experience
I have A Fib, new and unrelated to the HCM which is totally gone
I am on 5 mg of Camzyos. I do experience nausea but try to ignore it( ha). Because of high blood pressure I take 14 necessary medications per day. I’m hoping to have that number reduced as I improve. I am hoping the nausea, lightheadedn ess and loss of breath will be lessened as I reduce the other medications I’m given
I hope your Dad finds relief in his treatment and comfort in knowing your concern for him. Good luck

Hi @mspope111, Welcome to Mayo Connect! I am so glad you found this site...and so happy to see other members have tried to answer your questions. How wonderful that you feel some relief in such a short time on Camzyos. Have you noticed any other changes in the past week since being on this? When were you diagnosed with HOCM?