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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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I still take 5mg but my obstruction has completely gone away
I I have been takingcamzyos for almost 3 months now and the obstruction has completely gone
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2 ReactionsI ordered the test from Pillcheck. I live in Canada, so if you are in the US, you may have other options. I looked for a company that uses an accredited laboratory. I sent in my sample 18 days ago, and have not received results yet but it looks like it's at the review stage by a pharmacist.
I saw my family doc today and she was so reassuring. She said don't focus on your heart condition. Worrying about it is making you tired! Several doctor friends have told me the same thing (other than my cardiologist, who makes me crazy!).
Hope you just have post-covid symptoms which will improve soon.
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1 ReactionThank you so much for your comments. Where did you order the CYP test from as the results would be very interesting? My gradient dropped from over 100 to 19 after one month on 5mg of mavacamten. I was decreased to 2.5mg and have sustained my low gradient at 17 after month 2. I have had “known” HCM for over 10 years and had been relatively asymptomatic on metoprolol (with a gradient of 30). However, this year (a few months after I acquired Covid) my gradient and symptoms (SOB and fatigue which is new) increased significantly. Now I wonder if I have long covid instead since my gradient is so low and I’m still symptomatic?? I will stay the course for a few more months and hope more improvement is to come. I agree, we have to be our own advocate and so much more research is needed for HCM.
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1 ReactionThanks for sharing your symptoms, and asking the question.
I have had the opposite experience to you - my symptoms improved within a few days, and continued to improve after several months on mavacamten. I no longer need to nap during the day, and can walk without angina, and go up the stairs in my three storey house. I had to advocate to go on a higher dose, and am now on the highest dose of 15mg. But my gradient did not budge and my doctor said she was "disappointed." Gradient was very high at 150, then 139, and 6 weeks ago 117. She said this was irrelevant and that the drug is not working. But clinically I have way more energy than I used to have. I recently ordered a CYP test for drug metabolism. It includes mavacamten, and I learned that in Europe and Asia, this test is done before deciding dosage. It is not done in North America. You can purchase it privately for about $600.
My experience is that I have to be my own advocate, do the research, and seek other professional opinions. It is uncomfortable to hear different opinions from different doctors, and to be on the cusp of a paradigm shift in the treatment of HOCM. One of the other shifts happening is understanding the role of the gradient. I don't know enough about it, but have been told that there is debate. Sigh.
Good luck to all of us!
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4 ReactionsHello @andyherman3, and a BIG Welcome to Mayo Connect. Thank you for sharing your experience on Camzyos. It's interesting, but not strange, that each person will react differently to the same drug. I don't blame you for being disappointed your symptoms seem to have not changed much. Have you read some of the other members stories? @kelliw and @jaymaysea are both on Camzyos and each has had a different experience, and they both are champions for being their own advocate. When do you see your cardiologist again? Are they experienced with HOCM and how Camzyos works?
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1 ReactionYou 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?