Anyone take new drug Camzyos (mavacamten) for HCM?

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

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 🙂

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.

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.

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.

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!

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.

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 .

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

Ciao @giolig68 e benvenuto a Mayo Clinic Connect! Mi Italiano est molto bruto! Io capsico un po, io non parla l'italiano!
Grazie per translation!
I am so sorry to learn from you that you have HCM and are unable to obtain Camzyos in Italy. We know that other medications, such as beta blockers or calcium channel blocker only help with symptoms, and they barely even do that...so it must be frustrating to here of Camzyos and not be able to find or afford it. I know nothing of how the Camzyos program works with Bristol-Meyers, but it sounds like from others here in United States and Canada they have been approved on the program that funds the drug costs for them. Is there anything similar in Italy you can find through the drug company, Bristol-Meyers? Where in Italy do you live? Are you near a Center of Excellence?