Anyone take new drug Camzyos (mavacamten) for HCM?

That is all great news! I haven't signed any papers since I first signed up. I don't know if you read my post from about a month ago that since I am doing so well on 2.5mg they were going to stop it? My dr and I had a fit and he was able to keep me on the 2.5mg. My LVOT went from 75 to 8. It has stayed that way for 2 months but I am still on 2.5 and I intend to stay on it! I don't want to go back to feeling horrible.

It made me very dizzy at first too, so my dr lowered my dose to 25 mg. It helped. 🙂

He did not tell me the actual number. Just said the gradient was lower and according to the algorithm my dosage should be reduced from 5 to 2.5. The 5 mg is not making me feel any better even though the gradient is lower. I did have to do the “bearing down” maneuver. My issue is that my obstruction is only significant upon exertion/exercise. My records show this. But my cardiologist is going by the algorithm which provides that if the gradient is a certain level, then the dosage has to be lowered. Yet, he acknowledged that he does not have to follow that protocol. The written responses I got looked like it was straight out of a text book, with no regard for the actual facts. I am very frustrated; I am not an algorithm. So I am going to 2.5mg. What choice do I currently have? I meet with my cardiologist on the 26th. The journey continues; I wish the road was smoother.

I feel so frustrated for you. I was put on 2.5 because after the first month because my LVOT with Valsalva (it is a breathing exercise used during our echos) went too low. During my echo, I was told to bear down on my abdomen and slightly hold breath in order to achieve the pressure in my left ventricle as if it was being obstructed. So did your doctor tell you what your pressure was based on the Dynamic LVOT gradient with Valsalva to help you understand why he was decreasing your dose and not increasing it?

Good for you for advocating for yourself!!

You are seeing positive results! This improves your quality of life. Stay positive.

Totally agree that we need to be proactive with our doctors. This is a paradigm shift in treating OHCM and it is not comfortable for many physicians.

I’ve had the opposite experience to yours: symptoms improving, more energy and almost no angina. BUT my echocardiogram hasn’t changed. Third one coming up July 27. I’m on 5mg and told my doctor I want to
Increase dose if the gradient does not go down. It’s 130 at rest and 150 on Val salva. But I’m feeling better! My family can see the difference. I’m going to remain optimistic (mixed with anxiety 🤪) for a few more months. I think this drug is amazing and it seems there is great variation in response.

Good Morning Camzyos Family,
I am on day 31 of taking the drug. The last two weeks have been uneventful - negative or positive. I am still short of breath upon exertion ( walking and going up starts) and walking and still fatigued. So the drug doesn’t seem to be helping.

I had an echo on Monday. The Dr.s office said my pumping action was good and my gradient had improved. So they want to take me from 5mg to 2.5mg. I pushed back because so far I am not feeling any relief from my HOCM symptoms. I reminded them that it’s my gradient upon exertion that is so bad. At rest, which is the condition during a regular echo, my gradient is not that bad. Heart rate and blood pressure are still elevated. I will see what my cardiologist has to say.

It’s stressful that you have to be your own advocate and so proactive in your health care. Will keep you posted.

The first three echos are 28 days apart. This was my second echo. I have another one in approx. 28 days. If my numbers stay in a normal range, I will be on 2.5 mg and then get retested every three months if there are no concerns. This is the protocol right now established by the drug company. What I find comforting is that I am fortunate that a drug has been developed and put on the market the same time I was diagnosed with OHCM and that it seems to work. Even with our small group there are people who have been debilitated for years where their only final resource was surgery. I do realize there is so much that is unknown about Camzyos being an orphan drug (the only one of its kind). Has anyone else signed papers allowing their treatment, medical tests, etc. to be used for research purposes? Thank you @karukgirl for your encouragement!

Great news @nbs! Thanks for sharing that with the group. It must be comforting knowing your results are positive and things are going well. How long do they plan to keep you on the 2.5 mg before another echo?

Thanks for letting us know. Positive news for you is positive news for us all.