Anyone take new drug Camzyos (mavacamten) for HCM?

@captainterry
I am from St. Louis and I have family there . I really don’t mind the drive. My insurance is not with Methodist Hospital. This doctor sat down with me for 3 hours telling me all the procedures and all about HCM. Dr. Bach even calls me and works with my cardiologist in Memphis.
Thank you for letting me know .

Denver, Colorado (University of Colorado Anschutz Medical Campus).
I am taking Camzyos 5 mg since March 29 2024 and I am doing great with no side effects. I put in my mind before I started Camzyos that I will not have any side effects ( I had light dizziness only the first week but now no side effect at all). My septum when from 2.4 cm to now 1.2 cm so I have nice color on my face, I have no angina anymore and I am keeping my dosage not missing it at all.

Good luck.

@memphis901
I am in Memphis and have been on camzyos for 3 years with great results. You can follow my posts on this forum.
Get a referral to Sutherland Cardiology Group Memphis, Heart Failure Clinic, Dr. Anderson. Part of the Methodist/ LeBonneur Health System.
No need for you to travel to St. Louis for all of your camzyos after care and monitoring. They also have excellent and experienced Echo Cardiogram Sonographers which is very important.
I have no experience to share if you require surgery, thankfully.
God Bless!

@jess51
Hi Jess, I am a 69 year old, female. This is not genetic. I am on my second month of Camzyos and I feel much better. A few weeks ago I took my Covid and flu Vaccine at the same time and the next day I was in the emergency room for arrhythmia. I do not know if was the shots were too strong or this is from obstructed HCM. My doctor in Memphis did not say. I do go to exercise 3 times a week. I take Amiodarone twice a day. I am feeling tired. I go back to him next week. Since they do not treat HCM in Memphis I drive to St. Louis for my echo’s . I would like to have a buddy to go through this with me. I found out I had HCM 7 months ago. I went to get a cataract done ( it was fine) but ended up in the hospital that night for fluid in my lungs. This is my journey so far.

We have had similar results. My husband has done very well on Camzyos and his symptoms have reduced substantially. His echocardiograms have shown very good improvement. He was very tired at first and some short of breath with the 5mg. He takes 2.5mg and feels much better.

Oh, you (and your heart) will be in such great hands! I received the very best care, and you will, too!

Mayo at Rochester , Minnesota

Having heart disease in general is definitely a very scary thing to hear. Keep us posted on your journey on the septal myectomy road, mine was just over 3 years ago and I so very glad I put aside my fears and practiced courage. Where will you go for yours?

After seeing the warning that a side effect could be heart failure, I decided it wasn’t worth the risk. I understand that all meds have possible side effects, but heart failure is scary. So I’m having a septal myectomy.

I have been taking Camzyos for a week. My copay is $250.
They do a lot of testing before and during treatment. It can only be prescribed if you are at a COE (center of excellence) so I feel like it is worth a try. I had nausea the second day and have had general fatigue. I expected to be able to notice an improvement early on but I haven’t. I’m still hopeful and will keep you posted.
I volunteered to be in a clinical trial at the university where I am receiving care. They are testing blood flow before taking the drug and after I am on a maintenance dose. I feel better when I learn as much as possible and I didn’t take this decision lightly.