Anyone take new drug Camzyos (mavacamten) for HCM?

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

avcowie
I'm class III as well.

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.

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?

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.

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?

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!

Well @boatsforlife, it sounds like you are off to a good start!! I am glad to hear that you have a healthcare team that is engaged with your care...that is so important. Other fellow Camzyos folks can speak to their individual responses, and I hope some of them jump in here to cheer you on. @kelliw and @jaymaysea are two Camzyos warriors with experience and both have shared their stories with all of us. I hope you keep us posted after your upcoming echo.
Let's talk about this -40F and -5F business! What? That's crazy cold! Brrrr 🥶 I'm in beautiful far Northern California where I've never experienced such a thing. You have to be tough to live in weather like that...but then I say the same thing about where I live. It can be 116 here in the summer (not our record high) and you have to be tough to live here too!

Good morning boatsforlife! I like your username-we are boaters too! We are supposed to be going sailing today, but it's been raining, so probably not. I haven't posted for awhile. I am glad that karugirl got me going today. I started Camzyos March 30th and have my life back!!! Just realized it's been 6 months today! I am so thankful every day! I couldn't do any of the things you mentioned above before I started taking Camzyos. I also felt immediate effects, within a couple of days. I don't think you are imagining it! I have now lost 17 pounds too! I had put on weight because I couldn't do any of my regular activities but now am as busy as ever!! I am playing pickle ball, sailing, doing water aerobics class, playing golf etc. My doctor told me last week he wants me to start doing the weight machines, so I walked up a big flight of stairs-which is HUGE-and didn't get out of breath-and did the machines and the bike for the for first time in a long time, for an hour. I am so so thankful I can do this! It sounds like you will too-soon! I live in Southern California, by the beach, so the weather is pretty much in the 70's much of the year. I want to snow ski again too. I am 58 and going to retire at 60, so that is a great motivator to get the rest of my weight off! Keep us up to date. You've got this!

I'm an 80 yr old female who after chemo had Hcm. I experienced all the issues you described. My heart Dr ran tests on me and determined I was a perfect candidate for camzyos. I was on 5 mg 3 months and had improvenenr but my numbers not great. I was moved to 10 mg and stable here. Starting to step up exercising and much improved breathing. Please give it a chance. I live so grateful for the drug and life improvements. I have minor side effects mostly in the area of eating. Keep this group involved..WE CARE.