Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

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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deanna529 | @deanna529 | Mar 24 10:37am

Probably people don't want to share that information. LOL
I shouldn't say it did not help....just not enough. I traveled for top doctors at UPENN and consulted with several doctors before I made the decision. Remember this was 2017. HCOM was pretty rare back then. I think it has come to light more recently. I remember even at that hospital a lot of people never heard about it and wanted to hear my heartbeat. If I remember correctly, the numbers were 1 in 500 people had it. It seems to be much more prevalent now.
I was told at one hospital not to let just anyone operate on me....To do my homework, which I did.
The way I see it is I got a few more years than expected. Every case is different. I took a chance and would do it again if I had to. But today new drugs are coming out all the time. So If the surgery can extend your life, go for it. That is after you try new drugs...that were not available to me in 2017. Good luck to everyone.

katiekins | @katiekins | Mar 24 8:58am

In reply to @andyherman3 "Please keep us posted as I am very interested in the results and benefits of aficamten" + (show)

Likewise please. As someone who has always had low pulse readings 48/58 it’s suddenly become 126 and steadied at around 70/80 with palpitations and out of breath. Really strange but might have happened anyway. Any similar stories any one? Thank you wishing you all well.

andyherman3 | @andyherman3 | Mar 24 8:26am

In reply to @deanna529 "I also had a septal myectomy in 2017. Didn't help. I thought it would. The doctor..." + (show)

How often does a myectomy NOT work. I haven’t heard of that and this is important information for those of us considering this surgery. Thanks for your input.

andyherman3 | @andyherman3 | Mar 24 8:22am

In reply to @deanna529 "This is a double-blind study. I do not know any results or what drug I am..." + (show)

Please keep us posted as I am very interested in the results and benefits of aficamten

deanna529 | @deanna529 | Mar 23 2:14pm

I also had a septal myectomy in 2017. Didn't help. I thought it would. The doctor had a problem taking the heart size down on the bottom. Don't want to go through another open heart surgery.
I am so happy the myectomy worked for you!
I am not giving up 🙂

walkinggirl | @walkinggirl | Mar 23 2:00pm

In reply to @katiekins "Hi Deanna, so sorry to hear you came off Camzyos. May I ask what your symptoms..." + (show)

Kate, wishing you and Deanna the best. I had a myectomy in July, 2022. Very glad I did, it was time. was diagnosed 10 or 12 years before, perscribed blood pressure meds. A sudden syncope event followed by severe shortness of breath, and kidney problems were beginning to become serious. Post surgery, within 6 weeks my life was back to normal - walking 3 mi/5 km daily, etc. A couple of treatable complications developed. Good luck with whatever you decide.

manuelpo | @manuelpo | Mar 23 1:34pm

In reply to @deanna529 "This is a double-blind study. I do not know any results or what drug I am..." + (show)

Thank you @deanna529
Best luck to you on that new medication and I agree with you it is worth to try since the Mavacamten did not work for you. I will wait for the results if you can post them after week 24. Take care.

deanna529 | @deanna529 | Mar 23 11:59am

This is a double-blind study. I do not know any results or what drug I am on. At week 24, I should know more. I will keep you posted. At that time I will be doing a "washout" before they reveal what drug I have been on. Then possibly be put on aficamten if, in fact, I am not on it now. It is a crapshoot. Being Mavacamten had negative effects on me, so I thought this was worth a try.

manuelpo | @manuelpo | Mar 23 9:26am

In reply to @deanna529 "Thank you for your concern. I have been off of Camzyos for a long time already...." + (show)

Hi @deanna529
Thank you for the valuable information about Aficamten. Week 16. I wonder if that medication (Aficamten) at this clinical trial week 16 is helping you or not to safely lower the left ventricular outflow tract (LVOT).
What is stated in a publication is that:
"aficamten has a shorter human half-life (t1/2) and fewer drug-drug interactions, making it a preferable treatment option. This review evaluates the long-term clinical value and safety of aficamten in patients with obstructive HCM based on available data from completed and ongoing clinical trials. Additionally, the molecular basis of sarcomere-targeted therapy in reducing LVOT gradients is explored, and its potential in managing obstructive HCM is discussed". Please see this statement here: https://pubmed.ncbi.nlm.nih.gov/37526885/

I wonder if the statement published above applies to you or not since every patient result is different and if this could be a good option for future HCOM patients medical treatments.

Thank you!

deanna529 | @deanna529 | Mar 22 4:48pm

In reply to @karen317 "I know if you are on Camzyos you should get an ok from the pharmacy first...." + (show)

Thank you for your concern.
I have been off of Camzyos for a long time already. I am now in a clinical trial for Aficamten. Week 16. I always am asked what new meds I am on by my team. I reiterate that they never questioned me about OTC meds. ( like allergy, Tylenol.) Common sense is my best friend. If I am on a new Rx, then of course I run it by them.
Good luck to you.