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DiscussionAnyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 day ago | Replies (808)Comment receiving replies
Replies to "I would really like you to know how much I appreciate your comments about this medication...."
Hello @chris7121 , welcome to the HCM support group. I am not surprised by your comment that it took forever for your husband to be diagnosed. That seems pretty common for most of the HCM community. It took years for me as well, and I was 61 by the time they figured it out. It took two trips to two different Centers of Excellence (COE) for that to happen though. This is something that a lot of cardiologists are not familiar with, hence the difficulty finally getting the truth. I had to have a septal myectomy, done at the Mayo, but this new drug is showing a lot of impressive results for a lot of people. Not everyone will tolerate it, sadly, but so far it seems for the majority posting here, they are so surprised by how fast it works, how good they feel, and how impressed they are with their results. I encourage you to poke around here on Mayo Connect and educate yourself as much as possible about HCM and HOCM. The Mayo Clinic is a COE and leader in treating HCM, and you can find a ton of information about this disease. Knowing that this is genetic, and is passed by a parent can perhaps make you wonder, if you have children, could they have this too? Or could another relative have it? This is a wonderful supportive community and you have come to the right place for questions, support, and to know you are not alone. It is really important that you learn as much as you can so you can be you and your husbands advocate. When does your husband start taking Camzyos? Is his doctor knowledgeable in treatment of HCM or does he/she have a trusted expert to consult with?