Anyone take new drug Camzyos (mavacamten) for HCM?

https:// www. rbht. nhs. uk/ blog/ minimally-invasive-cardiac-surgery-success-story-for-nhs

I was told when I was diagnosed in 2010 that it was genetic, however I have not found any other family members. My mother did have atrophib as well as one of my son's.

Where do they perform that surgery?

Thank you for the link and looked it up (seen it before actually) but minimally invasive is not the same as robotic surgery. With minimal they cut a little down the centre where robotic I believe is done under the armpit. I think it’s only done in the states. Will ask cardiologist tomorrow and meeting with surgeon on 16th May.,

Maybe you'll make it to USA...check out Thailand, they have some very good Doctors and advanced technology. Good luck.

I have improved greatly on 10 mg of Camzyos. I am labeled "severe" HCOM. My doctor wrote ,"impressive results" on my chart regarding Camzyos. I did not feel well when I first started the drug. A nurse practitioner adjusted my metoprolol which made the difference for me. I mention this in hopes that someone else will consider this if they are not feeling well initially on Camzyos. A few days ago, I began taking 15 mg to see if I can improve even more.

It just wasn’t for me but I am low risk hence the reason it didn’t work for me sadly., So glad it is working well for others.

Hi, I am considered a "severe" HCOM patient as well. My cardiologist is really wanting me to try this medicine too. Can you tell me how long you have been on it? Have you had any side effects? What symptoms did you have before the Camzyos? I am just very nervous to try something new.

Thank you for your help.

I was very nervous to start a new drug, too. I have now been on Camzyos for 9 months. At this point, I am now hesitant to ever get off this new drug. It has made such a difference in the way my heart feels and I function. Just for background; I am a 61 year old teacher. It used to be difficult to actually read out loud to my students. I couldn't read entire long sentences, and now it is no problem. The main difference for me day to day is how my heart feels like its in a regular beating pattern. Feeling your heart race, skip beats, and flutter used to be my norm. Not true now. I did have a time when I felt a little unstable, and a Nurse Practitioner helped change my other meds for better results. He has been a valuable resource. I actually meet with him more than my cardiologist now. I mention this because it is super important to be in contact with the cardiologist if you don't feel well on the medicine.

I am on camzyos now for 5 weeks and my heart pressure gradient went down from 195 mm Hg to 10 mmHg so I feel no pressure on my chest anymore. Side effects at the beginning were a little dizziness, or some kind of heart palpitation that lasted only 2 days and each time was for only a few seconds twice a day. Now no side effects at all. I remain with excellent diet and I take walks every day. Also I keep with positive thoughts so I will not be worried when I go to bed to have any insomnia at all for I know the mind must be strong while having this treatment to help the medicine work better.
I will never leave this great camzyos 5 mg dosage unless the doctor ask me to since I feel a lot better with this medicine and I can walk better and do my activities better. I hope all of the ones who take this medicine feet better like I am feeling now.