Anyone take new drug Camzyos (mavacamten) for HCM?

I am karen317 I wrote in a year ago . I thought I would give you an update. I am still doing very well on the Camzyos. I also was very hesitant about taking the medications especially with the risks. My personal thought was I wasn’t living much of a life wanting to nap all the time so it was well worth the risk. Fast forward I have been on the medication for almost 2 years now . I am still doing really well . My drs and the echo cardio gram crew are all amazed at what they see in my tests . Main thing I feel better I am able to do things I would not of been able to before the medication. Right now I am babysitting for my 3year old granddaughter and 6 month old twin grand babies every week day. I also am taking my elderly mom to physical therapy 2times a week and her to her dr appointments . I am exhausted at night but I am able to help my loved ones. I know there is no way I could be doing this without Camzyos . I just want to say to anyone thinking about trying it and your cardiologist feels you are a candidate to really think about it and weigh your pros and cons . I am so thankful for the Camzyos.
P.s. I also think getting the echos every 3 mos gives the drs and myself comfort in how I am doing . We will know right away and take the right steps

I know if you are on Camzyos you should get an ok from the pharmacy first. I have gotten some cold medication ok ed by my pharmacist. Every month when I fill my Camzyos I mention all the meds I take regularly and the ones I take as needed . I have been approved for naproxen sodium , Tylenol and Coricidin HBP but BEFORE TAKING THESE or any medication call your pharmacy and make sure it is ok .

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.

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!

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.

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.

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.

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 🙂

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

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.