1. < Hypertrophic Cardiomyopathy (HCM)

Camzyos improved my gradient but my symptoms are not better

Posted by andrewbradlyn @andrewbradlyn, May 7 7:07pm

My cardiologist dropped my Camzyos from 5 to 2.5mg after the first month since my gradients decreased to less than 20. After 4 weeks at 2.5 my gradient is still less than 20 so I will stay at 2.5 for the next month. However my symptoms have not improved—I feel short of breath/out of breath more easily, fatigues, lightheaded at times. I was diagnosed with oHCM in September 2023, had a PFA for Afib March 2024, and I take 50mg metoprolol BID and eliquis 5mg BID. I have mild/mitral regurgitation, mild SAM, 1.8 septal thickness. I am concerned that my gradient and symptoms seem to be so disconnected—anyone have a similar experience? Thank you!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

brumasterj | @brumasterj | 6 days ago
In reply to @bbranin "Appreciate your response. I’m being seen by an HCM specialist. They have me doing valsalva during..." + (show)
@bbranin

Appreciate your response. I’m being seen by an HCM specialist. They have me doing valsalva during Echo’s but no squats. Perhaps I should subtlety recommend I do at my next Echo

Jump to this post

It would be worth asking from what i was told by the tech that does the echo, to be approved for the next prescription of camzos my gradient needed to be above 30
So with a valsalva i was not getting there but as soon as i did squats it got me there
Good luck with your treatment

REPLY
1 reply
bbranin | @bbranin | 6 days ago
In reply to @brumasterj "It would be worth asking from what i was told by the tech that does the..." + (show)
@brumasterj

It would be worth asking from what i was told by the tech that does the echo, to be approved for the next prescription of camzos my gradient needed to be above 30
So with a valsalva i was not getting there but as soon as i did squats it got me there
Good luck with your treatment

Jump to this post

Thanks, likewise!

REPLY
gregpt | @gregpt | 4 days ago
In reply to @brumasterj "Thank you for the comment. No, my Mayo cardiologist set up would start becoming symptomatic after..." + (show)
@brumasterj

Thank you for the comment. No, my Mayo cardiologist set up would start becoming symptomatic after coming off of it and just to be aware of the symptoms no medicine I don’t take any other medicines other than Camzyos, which I no longer take Camp house now as of yesterday.

Jump to this post

We are on a similar path...started Camzyos in Jan at 5mg, then the put me to 2.5mg, then off it a month, then back on. After consulting with a surgeon (Dr. Swistel - NYU), I decided to go that route instead. Seems like our condition is mechanical and the myectomy and valve repair just seems to make more sense. And, as you mentioned in another post, I'm not comfortable not knowing the long term effects of Camzyos. I've been off it for about a week...stairs are already getting harder. My surgery is June 25th...I think you are about a week ahead of me. Positive thoughts being lifted for you!

REPLY
1 reply
brumasterj | @brumasterj | 4 days ago
In reply to @gregpt "We are on a similar path...started Camzyos in Jan at 5mg, then the put me to..." + (show)
@gregpt

We are on a similar path...started Camzyos in Jan at 5mg, then the put me to 2.5mg, then off it a month, then back on. After consulting with a surgeon (Dr. Swistel - NYU), I decided to go that route instead. Seems like our condition is mechanical and the myectomy and valve repair just seems to make more sense. And, as you mentioned in another post, I'm not comfortable not knowing the long term effects of Camzyos. I've been off it for about a week...stairs are already getting harder. My surgery is June 25th...I think you are about a week ahead of me. Positive thoughts being lifted for you!

Jump to this post

Been off camzyos now 17 days! Doing pretty good so far as far as walking around im not riding my bike anylonger went out for a ride after being off camzyos 5 days and was struggling just to do 1 1/2 miles!
I have started getting tightness in the left side of my chest! My mayo cardiologiat has asked me to please take it easy, he said we put you on camzyos to get you stronger before your surgery day and we dont want you to relapse back to another heart failure by working out too hard!
Yes my surgery day will be on the 19th
I wish you the best and hopefully we heal quickly and get back to doing the things we love!

REPLY
mnsportsmanjr | @mnsportsmanjr | 14 hours ago
In reply to @brumasterj "Yes Dr Dearani is in Rochester and will do my surgery. Im 57 yrs young:)" + (show)
@brumasterj

Yes Dr Dearani is in Rochester and will do my surgery.
Im 57 yrs young:)

Jump to this post

He did my open heart surgery in 2016 at the age of 33. They say he is the best and seeing how my surgery was supposed to last 3 to 4 hours but I was done in 1.5 hours he is fast! Like all great surgeons, not much of a bedside manner tho.

I am now 42, just about to start Camzyos to delay my 2nd open heart as long as possible.

REPLY
brumasterj | @brumasterj | 3 hours ago

Thanks for the encouragement If you dont mind asking why the first surgery and why a second?

REPLY
View MoreView Less
Please sign in or register to post a reply.