Anyone take new drug Camzyos (mavacamten) for HCM?

Yes, I’m taking it. My co-pay is $35/30 days. In my third month with this Med. At this point, I haven’t seen any changes yet.

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!

Hello - I'll just add a bit here... I've been on Camzyos for about 9 months and I also experienced immediate positive results but have also experienced a bit of inconsistency. Sometimes the benefits don't seem to "kick" in as well. Good question for the cardiologist!
Jessica

Hello - I'll just add a bit here... I've been on Camzyos for about 9 months and I also experienced immediate positive results but have also experienced a bit of inconsistency. Sometimes the benefits don't seem to "kick" in as well. Good question for the cardiologist!
Jessica

Hey @jaymaysea thanks for the encouragement. I'm way behind your curve at just 14 days now. After just a few days I felt like I was improving but figured it was all in my head. At day 9 I accidentally did 3 flights of stairs in rapid succession and felt ... NOTHING. No chest pain. No dizziness. No heart pounding. No shortness of breath. Just nothing. Previously a single flight of stairs would just about kill me. From day 9-12 it was the same. Not one of my normal symptoms. It was almost confusing not knowing what I should do at the top of stairs or whenever I would usually have to stop and wait for things to subside. But the last 2 days have been a little bit of a setback. I've felt a little bit of what I'm used to feeling. Nothing at all like it has been for the last many years, but not quite as great as the previous few days. I'm not worried about it (much) as it's still very early days. To be honest, I wasn't expecting to detect any positive change for a couple months, so this is all a bonus even with the tiny step backward. My first 4-week echo is scheduled for 23 Oct. @jaymaysea, I'll keep in mind what you said about advocating for a stress echo should that become a thing. Like you, my problem is under exertion, not at rest. I'll post again in a week or two or if I have a significant change.

Welcome to the Family boatsforlife! I think you will find this is an amazing group that will support you in your journey. I came to the group when I was trying to decide whether or not to take Camzyos. It is because of the comments from the people here — factual and spiritual — that I decided to move forward.

My journey with Camzyos, in terms of results, has not been as life transformative as some of the others here. I have been taking it 111 days today; 3.5 months. I still experience shortness of breath upon exertion, but not as badly as before. Now, my heart rate is often high even when I am sleeping, which did not occur before I took the medicine. My cardologist insists that it’s not because of Camzyos. I still experience angina occasionally.

My cardologist is a divo. His word, I refer to his as a rockstar, because after years of being misdiagnosed he found the problem and prescribed Camzyos. But, I have had to battle with him a couple of times. He dropped me from 5mg to 2.5mg after the first month because he said the algorithm said he had to do so. But, because of information I learned here I knew that was not the case. He still dropped me; but, after reminding him that MY obstruction was negligible during rest but through the roof during exertion, he agreed to another stress echo rather than the limited ego that is done during the first 4 months on the drug. The result, he took me back to 5 mg. The morale of this story is that YOU have to be your best advocate, YOU are not an algorithm!

Also, make sure you know what you cannot take and can take with Camzyos; many things are counter indicated. Things you might not think of like grapefruit and some allergy meds.

Bottom line: This drug is not for everyone; people respond differently. So, be diligent, ask questions, listen to your body, have faith, and stay positive!

That must be frustrating @tjunca, no wonder you are on the fence about which way to go! You get to decide your course, and it sounds like you have a really good grasp on your situation. It is too bad you can't enjoy the benefits of Camzyos. Does your cardiologist know how much the side effects are affecting your daily life??

He doesn’t have a certain time frame to try the Camzyos. Says it’s up to me how long I want to stay on it as long as it’s helping. It is helping. My heart is better and better. Just looking at the long term. Having to stay on the medicine long term and dealing with then side effects I’m having. Knowing my heart is getting better but I don’t get to feel the benefits because of the dizziness and palpitations I have as side effects.