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Anyone take new drug Camzyos (mavacamten) for HCM?
Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!
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You are the first post I have read that had your dose lowered after the first echo…me too. Since our gradients went below 20, the recommendation is to lower the dose. I hear we are called “rapid responders” and we may be metabolizing the medication differently. I am however disappointed that I don’t feel my symptoms have improved much. My fatigue and shortness of breath while climbing stairs has not changed much. Does anyone know if improvement in symptoms can lag behind the improvement of our cardiac numbers?
Hello, I did not have any change yet, however they told me they do not expect much change after 1 month. The good news is that I have not had any negative reactions, here's to improvement after month 2.
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3 ReactionsApologies if this question has been answered but I don't recall seeing it addressed here. The Mayo Clinic website lists HCM complications as including atrial fibrillation, and sudden cardia death, among other things. If you respond well to Camzyos and your heart is able to pump better, most of those "other things" seem to be addressed. My question is, does Camzyos also reduce your risk of atrial fibrillation or sudden cardiac death due to HCM? Has anyone ever been provided with that information?
Those are amazing numbers @lakehappy! Has your doctor been able to explain why you are still so short of breath even though your gradient dropped?
That's great news, hopefully I will have my results Monday I did not me with my doctor.
Hello All, I had my echo today and my gradient went from 71 to 29. Very happy to hear that drug is having an impact. Hoping my shortness of breath improves soon.
Hope @dwc62 has some good news too.
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4 ReactionsI'm not scheduled to see the Doctor until January.
Well @dwc62, you and and @lakehappy are both in the same boat it sounds like. I'm glad you are both able to share this with the Camzyos group and offer support to each other. Will you let us know what you learn after your test?
I hope your echo shows improvement @lakehappy. It must be puzzling to be on Camzyos for a month and not notice any change in symptoms. I would have a hard time being patient, so good for you! Is your cardiologist going to let you know right away after they see the echo?
Hi all. Has anyone noticed a queasy stomach while on Camzyos? Been on it 10 days and this is the only side effect.