Anyone take new drug Camzyos (mavacamten) for HCM?

Hi @boatsforlife. Thank you so much for the great information you kindly provide about camzyos. I am 63 years old and the Cardiologist certified to prescribe camzyos will see me on March 8th. I know is the only medicine that help to improve the HCM (hypertrophic cardiomyopathy). I understood the hiccups here and there can be nausea, vomiting and/or dizziness. I wonder if the doctor can prescribe me some anti nausea or anti dizziness or I cannot have any since camzyos is very sensitive and may interact with that. I have very high blood pressure normaly in the high range. I wonder if the hiccup can affect raising even more the blood pressure.

Thank you so much and I am very happy camzyos is working really well for you. All blessings to you!

Hi @mspope111 . Welcome to the group. You will probably find lots of support here - I know I certainly have. I've been on Camzyos since mid-Sept last year. I had 17 years of progressively worse fatigue, shortness of breath, dizziness, chest pain. Classic heart attack kinds of symptoms except for the arm and jaw numbness. Never any blood pressure issues though. All on the tiniest bit of exertion - bending to tie shoes, walking up 1/2 flight of stairs. Even walking on clear, flat ground while wearing heavy winter boots. Then just like you, on day 2 of Camzyos I noticed things that should have hurt, suddenly weren't bothering me so much. Within 2 weeks EVERYTHING disappeared, and has stayed away but for a couple occasional, one-day hiccups here and there. My cardiologist saw room for further improvement and increased me from 5mg to 10mg at the 12 week point. Again, a couple very minor hiccups but all seems well again. As I have said in this group before, I don't know what my echo numbers say, and I'm happy to let my cardiologist continue to lead me down this path since I feel so GREAT! Unfortunately, there are others here who have not had the same positive experience, and I feel terrible for them. I hope your results are like mine, because it has given this 59 year old his life back. Good luck!

Hi to both of you @twizzy and I just wanted to add. I have not faced this particular drug but had another one a while back. The staff at Mayo Phoenix were able to suggest some coupons from the manufacturer to help with cost. Have you tried contacting the Pharmaceutical Company to see if they offer discounts? That is sure an expensive one. I hope you are successful in getting some kind of help.

Hi @twizzy and welcome to Mayo Connect!
Wow! It sounds like you almost didn’t make it! Thank goodness you were saved by the EMts.
It sounds like you were totally caught off guard by HOCM. I can understand that, because I was too.
I didn’t get to try Camzyos, but hopefully some others with experience can jump in here and answer your questions. The Camzyos group a wonderful place to learn from each other. I know other members have had success getting this approved, and I hope the same for you.
Is your cardiologist familiar with HOCM? Can their office assist you with the process?

Healthwell Foundation provides financial assistance for costly medications in the form of grants. Many Medicare Part D providers require you to first satisfy your catastrophic copay limit before they pay at 100%. This might amount to several thousand dollars in order to reach this level. Hopefully a grant might help bridge that hurdle. Good luck.

I am brand new at this. EMTs saved my life and got my attention. Oklahoma Heart Hospital Drs gave me info on Camzyos after diagnosing HCM. I am 65, was healthy (I thought) and only have Medicare. Is there help purchasing this drug?

Hello Everyone,
I am 61 year old woman with HCM. I started CAMZYOS 2 days ago. For some reason, my heart feels like the strain is off it. We shall see. I hope and pray this is the answer! My question to those who use this drug successfully, what symptoms you were having that went away? Blood pressure, fatigue, tighting of the chest when exercising? Thanks!

Hi Debra,

Blessings to you on your open heart surgery. I was born with HOCM. My first doctor appointment is this coming March. I know the camzyos cost $8,500 per month. I will ask my Cardiologyst insurance info but my 30 year experienced Insurance Broker told me I have to have a life event to qualify to change my current health insurance that does not cover this new cardiologyst. My insurance covers the previous cardiologyst that does not treat advanced 2 centimeters HOCM in my heart. Thank you for your response.

Thank you Justin!
There is no insurance for unemployed that is a PPO. They only have HMO that my Cardiologyst is out of network. In other words, I need a $20,000 budget for my HCM treatment which includes $8,500 a month for camzyos, $600 doctor follow up monthly visit and $350 copay per month for monthly echocardiogram to avoid open heart surgery that costs over $100,000.
I am very lucky I guess. I have been out of work for almost 3 years now. I wonder why I was born with this HypoCardioMyopathy now when I was not born to be millionare.

Hello @manuelpo. Here is a link to learn more about Cigna PPO, https://www.cigna.com/individuals-families/shop-plans/plans-through-employer/ppo.

PPO stands for Preferred Provider Organization. I am not an insurance expert, but this type of insurance appears to be through an employer and not something you can opt into as an individual. You may need to contact your employer, or the insurance company directly to confirm this.