← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@boatsforlife

Good evening folks. Geoff in Canada. Starting Camzyos this coming Tuesday. Have been trying to track down the problem since 2006, and a month ago a new echo and a new cardiologist said HCM, bring on the Camzyos. I've been lurking and reading all of these posts for the last week. Encouraging to see that many (most?) of you end up with positive responses to the med. Scary to see the "5mg-2.5mg-stopping" path some of you have had to take. Makes me remember the 1990 Robin Williams movie Awakenings. Will update the group as my journey proceeds.

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Replies to "Good evening folks. Geoff in Canada. Starting Camzyos this coming Tuesday. Have been trying to track..."

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?

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.