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DiscussionAnyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)Comment receiving replies
Replies to "Good evening folks. Geoff in Canada. Starting Camzyos this coming Tuesday. Have been trying to track..."
Hello again Camzyos family. An update at the 6 week mark. I feel ... GREAT! Noticed some possible positive effects after the first couple days then a bit of a wobble around days 10-12, and since that time it has been the most amazingly smooth sailing I could have hoped for. Sometimes I forget and start walking a little too briskly and feel some minor effects - just exactly what one might expect from being 15 years without any real kind of exercise. I have no idea what my numbers are from my pre-Camzyos echo and my 4 week echo, and I'm intentionally not finding out. I know how easily I can psych myself out trying to understand all the stuff in anything like an echo report - especially with my medical degree from the School of Google. My cardiologist has been asking how I am feeling, and is replying with positive comments and has not changed my dosage yet, so I am content to let him do his job at this point. Saw my family doctor last week and told her how great I am feeling. She said it was probably too early to see much in the numbers yet, and then it was fun watching her jaw hit the floor when she compared the 2 echos. So I'm just riding a high for now.
Hey there @boatsforlife, WELCOME to Mayo Connect! There are several folks on here from up north in Canada, and if you have been "lurking" long enough to read their stories, like @hansj, then hopefully they can help you navigate the system as you begin your Camzyos journey. Sounds like you are one of the majority of us HCM/HOCM people who are incorrectly diagnosed for a long time. It really is eye opening to find out that you knew you had something wrong, and get treated for something you didn't have. I am glad you are here, and glad you shared your thoughts with the group. Canada is big...where are you from? Is your new cardiologist up-to-date on all things HOCM? What are some of your concerns about starting Camzyos on Tuesday?