Anyone take new drug Camzyos (mavacamten) for HCM?

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

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!

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.

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!

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 @mspope111, Welcome to Mayo Connect! I am so glad you found this site...and so happy to see other members have tried to answer your questions. How wonderful that you feel some relief in such a short time on Camzyos. Have you noticed any other changes in the past week since being on this? When were you diagnosed with HOCM?

Hello….I have been chosen to be on Camzyos since the 22nd November by my new cardiologist after a cardia event. I am in Northern Westchester NY. My cardiologist is working through a cardiologist in Long Island New York.
I had a zoom interview with the second cardiologist and was accepted as a viable candidate. I received my prescription by UPS only. I am interviewed by a drug company rep each month before my Camzyos is sent.
Only30 pills are sent each month
Within 4 weeks my HCM was gone! The valve was totally functional and the thickening of the septum was reduced to allow the valve to function properly. A heart murmur I’ve had since birth has completely disappeared. as well.
I am still suffering from extreme fatigue and find I often run out of breath. These things are very frustrating for me. I do not ever have chest pain, even though I had a heart attack and subsequently a stent placed.
This medication is a medical miracle but I’m still waiting to be rid of the fatigue and loss of normal breathing.
Perhaps someone reading this, who has been on Camzyos for a time longer than 4 months, can help me with their experience
I have A Fib, new and unrelated to the HCM which is totally gone
I am on 5 mg of Camzyos. I do experience nausea but try to ignore it( ha). Because of high blood pressure I take 14 necessary medications per day. I’m hoping to have that number reduced as I improve. I am hoping the nausea, lightheadedn ess and loss of breath will be lessened as I reduce the other medications I’m given
I hope your Dad finds relief in his treatment and comfort in knowing your concern for him. Good luck

I do... been on it 5 months and I love it