Anyone take new drug Camzyos (mavacamten) for HCM?

Good afternoon. Meds arrived Tuesday and I've had 3 doses @5mg so far. No negative side effects yet. I've done a couple things where I thought "hmmm, that wasn't as bad as is should have been" but I think that's probably purely psychological at this early stage. Still recognizing the same symptoms as usual, and as described by others here. Chest pains, heart pounding, shortness of breath dizziness on any exertion. Bending down to put on shoes? Yep. Walking 1/2 block after even a small meal? Yep? Stairs? Yep. Carrying a bag of groceries up stairs? Yep yep yep. NYHA III. Got a call from my nurse-case-manager on day 2 just to ask how things were going, and see if I had any questions or concerns. Super-responsive team so far. I'm hopeful that over the next couple months things will start to go back to where I can do normal things again. Echo in 3 weeks or so. And yes, winters can get down to -40F but that's unusual. -5F would be more normal. It's been interesting to read some of other people's issues with having trouble in the heat. I have a lot more trouble (HCM-wise) with the cold. Would be great if I could take up skiing again!

I bet it gets cold in the the winter up there!
You have a right to feel concerned about your treatment. Especially since being misdiagnosed for so long. I know the feeling, and was shocked to learn that after the years of misdiagnoses, my heart was failing too. I had no idea and it was not until I made my way to the Mayo clinic I learned this news. They did what no other cardiologist had done. Two very simple tests. A chest x-ray, that showed my heart was enlarged, and a simple lab (BNP) that showed my heart was failing. It woke me up and scared me enough to decide I wanted to live a better life than the one I was. I couldn't bend over to put my shoes on without experiencing tachycardia, head rushes, and shortness of breath. The symptoms I got after eating a bigger than normal meal were the same. I thought I was crazy! My question after all this was why didn't anyone ever order these two simple tests? I was dumbfounded.
I hope for you as you begin this journey on Camzyos is one of confidence in your doctor and the process, which it sounds like you have. It must be a difficult decision to make, and one I can't imagine. All the Camzyos people on here are very brave people in my book. Open heart surgery, though scary, seems like a much easier decision. Are you ready for tomorrow, your first day on this new drug?

Hi @karukgirl, thanks for the welcome. I'm in a small Alberta town 450 miles straight north of Yellowstone National Park. It's funny you ask about what concerns I have. After chasing one false lead after the next, getting my hopes raised then dashed for 17 years - my biggest concern is just going through that cycle again. Maybe I should be more worried about the heart failure business but it seems to me I've been living with a form of untreated heart failure all this time anyway, and now I'll be under a microscope. Not sure how up to date my cardiologist is on HCM but he is very attentive and responsive and I feel quite confident in him. I think I'm his first Camzyos case. For now I'm hopeful but trying not to let myself get optimistic. Time will tell.

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?

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.

avcowie
I'm class III as well.

I’m guessing I would classify as a III. What is your class?

avcowie
OOPS! I left a letter out of the acronym for New York Heart Association. It's NYHA . . . a classification for heart conditions according to severity. Class I means no trouble with physical activity. Class IV means unable to carry out any physical activity without discomfort. I had to ask my Doc which I was so not surprised you are not familiar with it.

I’m sorry to hear that you feel you wasted your time. I was hoping it would help as apparently it’s a magic pill for some.
I try to think of it as part of my journey.
❤️‍🩹

I am 56. I’ll write an update after surgery. Please define what an NYA is and what the classification means. I don’t know much of the jargon.