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 | May 12 12:15am
In reply to @jmr091805 "We are all on the precipice of needing heart surgery. Camzyos is just delaying it. I..." + (show)
@jmr091805

We are all on the precipice of needing heart surgery. Camzyos is just delaying it. I am grateful for Camzyos' existence. If this had happened to me 3.5 years ago, I'd already have had a septal myectomy. So the hope to stay healthy and responsive to Camzyos is there. But who know if in a few years or longer, it is learned that Camzyos had other effects on our bodies? But it's an existential issue when your heart is in trouble as ours are.

Jump to this post

Yes i wander about the long term effects camzyos will have! That was another reason i have opted for surgery tomorrow will be 5 months exactly i been on camzyos and it will be my last dose as well!
They want me off camzyos 5 weeks before surgery!
They said i will become symptomatic when i come off so not looking forward to that again:(

REPLY
Mentor
Debra, Volunteer Mentor | @karukgirl | May 12 11:17am
In reply to @brumasterj "Thanks for the encouraging words and great advice! I never thiught of the rest of my..." + (show)
@brumasterj

Thanks for the encouraging words and great advice!
I never thiught of the rest of my organs not getting the oygenated blood because of this!
Although the camzyos has been great it has its limitations so i cant get after it on my work outs!
Look forward to being able to do that again:)

Jump to this post

@brumasterj,
@walkinggirl is right on about not being able to do things we used to twenty years ago...we all wish that! She is also correct that being in great physical shape is a super positive thing going into open heart surgery. And it also doesn't hurt that being at the top hospital in WORLD for this surgery is the best of all things possible. You will find this true as you begin your pre-op journey, right up to the day they wheel you to the front entrance to say good-bye!
I appreciate how you have been able to share with our little community your wonderful positive attitude, and I must say that too will help you along during this process.

I know you must be concerned about not taking Camzyos any longer starting today...I would be too, since you have had some relief from your HOCM symptoms. Did your cardiologist give you any advice about being off this and becoming symptomatic? Your surgery is several weeks away...do they want you on Beta or Calcium channel blockers?

REPLY
1 reply
kiph | @kiph | May 13 11:16am

I am on 10mg of Camzyos but still have shortness of breath, tiredness and fluttering in my chest. Some light headedness as well.

REPLY
brumasterj | @brumasterj | May 13 2:34pm
In reply to @karukgirl "@brumasterj, @walkinggirl is right on about not being able to do things we used to twenty..." + (show)
@karukgirl

@brumasterj,
@walkinggirl is right on about not being able to do things we used to twenty years ago...we all wish that! She is also correct that being in great physical shape is a super positive thing going into open heart surgery. And it also doesn't hurt that being at the top hospital in WORLD for this surgery is the best of all things possible. You will find this true as you begin your pre-op journey, right up to the day they wheel you to the front entrance to say good-bye!
I appreciate how you have been able to share with our little community your wonderful positive attitude, and I must say that too will help you along during this process.

I know you must be concerned about not taking Camzyos any longer starting today...I would be too, since you have had some relief from your HOCM symptoms. Did your cardiologist give you any advice about being off this and becoming symptomatic? Your surgery is several weeks away...do they want you on Beta or Calcium channel blockers?

Jump to this post

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.

REPLY
1 reply
mustang68 | @mustang68 | May 20 1:44pm

Very similar here however i am at 10mg. My gradient with Valsalva is 20. My septum is 1.9cm. 10 months on Camzyos and i try to bike 6 miles three times a week at about 12-13mph. I avoid hills. If i push too much I pay for it the next day. I feel frustrated as I am wondering if I am just kicking the can and if it's really more related to my diastolic dysfunction than the obstruction. However, I am guessing that the obstruction is greater with exercise. I certainly notice greater symptoms after I eat. Some have told me that they have had their Dr add Jardiance to the cocktail. This is something I am going to ask at my next visit. However, with HOCM we need to be careful with any sort of direretic as it can trigger obstruction. I worry that a septal reduction will not do anything for me- if they would even suggest it given my obstruction is now being controlled by Camzyos. I do remain a little confused and I am just staying the course-

REPLY
1 reply
brumasterj | @brumasterj | May 21 9:15am
In reply to @mustang68 "Very similar here however i am at 10mg. My gradient with Valsalva is 20. My septum..." + (show)
@mustang68

Very similar here however i am at 10mg. My gradient with Valsalva is 20. My septum is 1.9cm. 10 months on Camzyos and i try to bike 6 miles three times a week at about 12-13mph. I avoid hills. If i push too much I pay for it the next day. I feel frustrated as I am wondering if I am just kicking the can and if it's really more related to my diastolic dysfunction than the obstruction. However, I am guessing that the obstruction is greater with exercise. I certainly notice greater symptoms after I eat. Some have told me that they have had their Dr add Jardiance to the cocktail. This is something I am going to ask at my next visit. However, with HOCM we need to be careful with any sort of direretic as it can trigger obstruction. I worry that a septal reduction will not do anything for me- if they would even suggest it given my obstruction is now being controlled by Camzyos. I do remain a little confused and I am just staying the course-

Jump to this post

I think each of us are built so differently in many ways and handle medications in different ways. My obstruction becomes greater with greater stress on my exercise. That was shown on my echo i would have to do body squats to get it back over 30mmHg
Im off camzyos now 1 full week and starting to gradually become symtomatic again
Which was expected while waiting septal myectomy next month.
Dr. Dearani said after my surgery he believes i will feel 20 years younger!
Best of luck to you!

REPLY
1 reply
mustang68 | @mustang68 | May 21 10:05am
In reply to @brumasterj "I think each of us are built so differently in many ways and handle medications in..." + (show)
@brumasterj

I think each of us are built so differently in many ways and handle medications in different ways. My obstruction becomes greater with greater stress on my exercise. That was shown on my echo i would have to do body squats to get it back over 30mmHg
Im off camzyos now 1 full week and starting to gradually become symtomatic again
Which was expected while waiting septal myectomy next month.
Dr. Dearani said after my surgery he believes i will feel 20 years younger!
Best of luck to you!

Jump to this post

Thank you so much. I wish you excellent good fortune and outcome. Please keep us updated. I’m assuming you are going to the Cleveland Clinic?

REPLY
brumasterj | @brumasterj | May 21 11:32am

I was diagnosed at Phoenix
Mayo and will have surgery at Rochester Minnesota Mayo

REPLY
mustang68 | @mustang68 | May 21 1:01pm

Thanks so Dr Derani is at Rochester? May I ask how old you are? I’m 67

REPLY
1 reply
brumasterj | @brumasterj | May 21 1:06pm
In reply to @mustang68 "Thanks so Dr Derani is at Rochester? May I ask how old you are? I’m 67" + (show)
@mustang68

Thanks so Dr Derani is at Rochester? May I ask how old you are? I’m 67

Jump to this post

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

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