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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Jun 22 2:38pm | Replies (736)Comment receiving replies
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.
Replies to "Good Morning Camzyos Family, I am on day 31 of taking the drug. The last two..."
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!!
I'm sorry that you are still feeling that way! Stay strong and push for what you need! Don't just take things at what they first say. I would think they would bump you up, not down. It seems to be their "protocol" to move all of us down. I love how you addressed to the Camzyos Family! We are! 🙂 Keep us posted...
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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.