Anyone take new drug Camzyos (mavacamten) for HCM?

Good Morning, Bristol Myers Squibb has a Patient Assistance Foundation. If you qualify, they will provide you with the medication at no charge.
Here is the link: https://www.bmspaf.org/
They have been wonderful.

Hi @boastforlife. Thank you so much for the information. My problem is my high blood pressure can get out of control that puts me in risk of stroke (I never had) or heat attack (I had 2 already). Hopefully all will go well.
I hope you continue having great results!

I have been on Camzyos 2.5mg for 18+ months. My good story is just like "Boatsforlife" except no full body joint pain events (prob not Camzyos). I have no nausea. Only a few minor short echos of past symptoms which simply remind me of how thankful I am for my life after Camzyos! May God's Blessings and Peace be with you!
I have made other posts on this site if you want to read more of my experience as a patient.

Hello @manuelpo. In my case the hiccups were very minor, and not the type you mentioned. When first on the drug at 5mg, I had 2 or 3 one-day events in which it felt like all of my normal oHCM symptoms were back but by the next day those symptoms were completely gone again. In the first couple weeks at 10mg, I had 2 brief episodes (a minute or two each) in which I experienced terrible, full-body joint pain. that came out of nowhere and then disappeared just as quickly. It may have had nothing at all to do with Camzyos. I've been charting my blood pressure almost daily since before starting Camzyos and it hasn't changed appreciably. Other than those few incidents I have have no negative side effects whatsoever. Best wishes for success - I hope you have good results!

Hi @danab. I will ask my Cardiologyst how to apply for laboratory assistance and thank you so much for the thought!

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.