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@nanakpm

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.

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I really appreciate this group. My doc has one patient on this drug and zero previous experience with it. And much prefers surgical intervention.

It’s so helpful to read about the experience of other patients!! Thank you all.