Anyone take new drug Camzyos (mavacamten) for HCM?

How wonderful you live in an area with such great access to HCM experts! And you have an inside track with your husband's expertise. There are several others in this community from Canada as well, who have recently started Camzyos. @hansj for example has done really well. If you get some time, read the posts on here. Hopefully you will learn more from people who are on the same pathway as you.
Viral myocarditis? Yikes!! That must have been very scary 😮 I hope you are doing well now except for HOCM. Has your cardiologist been impressed with your test results? Did your LVOT pressures normalize?

Thanks for your reply and encouragement, especially about open heart surgery. Like several others on this site, I was shocked when my cardiologist suddenly blurted out "you need open heart surgery" when I went to talk to her about Camzyos. I am sure there is a better way to share that opinion. She did not recommend Camzyos because it is new. Yes - it does take courage to be in the forefront of trying a new drug. And it is an adjustment for physicians to embrace a new paradigm of treating HOCM. If indeed my kids have inherited the gene, I am happy to contribute to knowledge about a non-surgical intervention. Not everyone has access to surgeons who have the experience and track record of doing myectomies successfully so Camzyos may be a safer treatment for many. I was diagnosed about 7 years ago, having had a bout of viral myocarditis 3 years earlier. Managed on a calcium channel blocker and then added Rythmodan. I am fortunate that I live in a place with world class expertise in HCM (Toronto) including an excellent surgeon who specializes in myectomy. And even more fortunate that my husband, a professor of medicine, saw reference to mavacamten in the literature, and encouraged me to explore it as an option. The doctors at the HCM clinic here were not offering it a few months ago (January), and recommended open heart surgery. but I think they are now offering Camzyos as an option. I don't know how patients find out about it unless they read medical literature, or have doctors who are open to trying it.

I was blessed to have been referred to a cardiologist who specializes in HCM and is an advocate of Camzyos. That said, when I followed up with my regular cardiologist, who referred me to the specialist, she told that she didn’t know anything about the drug, didn’t understand how it worked, and thought I was headed to open heart surgery. It made a scary decision about whether to take the drug even scarier.

This group gave me the comfort to move forward. I am on 5 day. So far so good. I have not noticed a change yet-positive or negative.

Unfortunately, probably not. I can send an email using the portal. I can also send a message to the nurse navigator. But, I doubt I will get a response over the weekend.

Can you give me some examples of situations that could could up? I have been on the lookout for dizziness. But, I am not sure what else could occur.

Dang.
Well, I wish I could give you an example, but I have no experience with Camzyos. @kelliw and @hansj have a few months on you and I know they have been so willing to share their experiences...let's see if we get them to chime in about what to look out for in the first week. I think @starbuck41 was pretty active his first couple of weeks as well. It seems that we all are so unique and individual, no two people are alike and therefore probably we can't say "this is what to expect" the first week or so. I hope you are feeling calm, resolving to keep your positive attitude, and know you are already stronger than you thought you were!
It's a journey you are on...and each day may be different. Praying for peace and only good effects @jaymaysea.

Sorry guys for the lengthy delay in updating my Camzyos journey.
So here it is
Weight 266.4
Ht 6’3
Age 59
So a couple things happened, the VA failed to get an echo cardiogram done on time so they didn’t send medication, that has since been remedied I received a 5 day dose after not taking it for several days, I will once again start my daily routine tomorrow;
Echo revealed that my gradient had decreased slightly even after not taking the meds for about 4 days. Cardiologist exam revealed nothing abnormal (side effects) I have not had any dietary changes
My blood pressure was 137/88..
Update; a few days ago I had lasik surgery done, results seem to be good but it’s gonna be a few weeks on that:
Still without taking meds for several days, no out of breath moments, and still I must admit my daily quality of life is better, did take a trip up to the mountains 10,ooo feet, no shortness of breath, dizziness or heart palpitations, I will start my 5mg dose tomorrow. My loyal sidekick Murphy is doing his best to be a “good boy “ lol.
I have also been prescribed
50mg motropolol daily
And a cholesterol med
Metformin 500mg daily
Oxycodone 10/325 as needed

I promise I’ll be doing the daily update now that it’s going to be a non issue with refills. I’m headed to Texas next week for a funeral but I’ll make time.
Until tomorrow my friends
David

Dang.
Well, I wish I could give you an example, but I have no experience with Camzyos. @kelliw and @hansj have a few months on you and I know they have been so willing to share their experiences...let's see if we get them to chime in about what to look out for in the first week. I think @starbuck41 was pretty active his first couple of weeks as well. It seems that we all are so unique and individual, no two people are alike and therefore probably we can't say "this is what to expect" the first week or so. I hope you are feeling calm, resolving to keep your positive attitude, and know you are already stronger than you thought you were!
It's a journey you are on...and each day may be different. Praying for peace and only good effects @jaymaysea.

Thank you Debra. I am feeling positive. After I got your note, I immediately sent my cardiologist a note asking what to do if I was having any side effects and what, besides dizziness and fainting, were some of the other things I should watch out for. Just another example of how helpful our Mayo Connect community is. I did not think to do that until you raised it.

FYI for those taking Camzyos. I put a drug interaction app on my phone. The list that BMS provides is extensive. But there are drugs which may have an interaction that are not on the list. For example, I used Astepro for my allergies yesterday thinking it was fine. Then I checked it. Turns out it can have an interaction with Camzyos, albeit it moderate. So Camzyos users I recommend before you take any drug look up whether it could potentially interact with Camzyos.

Unfortunately, probably not. I can send an email using the portal. I can also send a message to the nurse navigator. But, I doubt I will get a response over the weekend.

Can you give me some examples of situations that could could up? I have been on the lookout for dizziness. But, I am not sure what else could occur.