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!
Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
great to hear.
what is your current dose?
@nanakpm thank you for your advice for I was planning to do the same thing if I reach the same situation you have just increase the dosage and NO open heart surgery. My symptoms improved a lot but I do not know about my gradient till my first echo is done this coming 20th of April.
I do not mind even for maintenance be on camzyos for the rest of my life for it is worth it. My insurance covers that medicine even though that is an insurance I bought by myself and I do not work anymore for I took early retirement.
Hi. I’ve been on Camzyos for almost a year. So glad to hear from Karen317. I felt better soon after starting Camzyos - more energy, less angina, fewer naps. But the LVOT gradient didn’t come down. My dr wanted me to stop Camzyos and have surgery. I persisted and asked to try higher dose instead. After 6 months the LVOT started to come down. I started on highest dose in November and by January the LVOT dropped from 119 to 58. By April this year it’s down to 7. I think some of us take longer to respond. If you’re feeling ok, stay with it! Great to hear about other people’s response. Thanks to all of you.
Hi Karen,
I am on month 2 of Camzyos. I went from 257 LVOT down to 57. Still on 3 blood pressure meds and still tired with naps. Hopefully this will improves. Did it improve for you right away or over time? Thanks.
Good comment, Deanna. When I was diagnosed with HCM, neither I nor anyone I knew ever heard of it. I think HCOM as a diagnosis is fairly new, as a condition it probably has been around for generations. I, too, was the heartbeat demonstration - glad I could help out. More is learned every day and in some places, young athletes are screened.
Horrid drug for me since I started on Janaury 9th 2024, amazing first week then the side effects stated severe headaches, aching muscles, eye disturbance.... etc....I was on Veramamil at the same time could it have been that who knows.....now April having have developed Atrial Fibrillation during the past month... Never ever had this before.....Seeing my cardiologist on the 23 rdApril we shall see...I am delighted for all of those that have had their lives changed by this drug...sadly I am not one of those and am looking at septal myectomy soon.
Keep well and safe all....
After 4 months on camzyos and doing really well; I went into afib two weeks ago.
After a cardioversion when my my heart was reset, I am doing ok.
Still on camzyos so clearly no connection with my newest ailment.
Hello @maree56, welcome to Mayo Connect!
I'm glad you found this site...and all the way from Australia too. Have you had time to poke around on here? There is a lot of information shared by other members that you may find interesting and helpful.
Every person is so unique and no two are alike, therefore each can have much different reactions to Camzyos, or any med really. You mention you have been on Camzyos for three months for HOCM and you still tire easily, did you have that same feeling before Camzyos?
I bet you are excited/anxious to learn the results of your upcoming echo, will you come back and share your progress?
I am on my fifth day of camzyos 5 mg and I feel some improvement with less pressure on my chest. I have strong faith that this medication is working. My Echocardiogram is scheduled in 3 weeks. It should show some improvement by reducing some of the gradient pressure I have. I wish this treatment works for everyone.
I'm maree from australia I have Obstructive HCM. Been on Camzyos for 3 months get tired easly still having echocardiograms next week to see if anything has changed and monitor progress.
How is everyone else going ?