Symptoms getting worse on Camzyos

Posted by cindy @cindyw9999, Mar 24 11:00am

Diagnosed with symptomatic OHCM early January. After trying Metoprolol and Verapamil with horrible side effects, I started Camzyos one month ago. Initially I felt the best I had in 2 months. Results of evho showed great improvement on my gradient. Last 7-10 days I have new symptoms and feel awful. On and off dizziness and heart palpitations thru out the day. When I eat a meal, within a few minutes, heart racing and dizzy and now my stomach is bloating. I’ve been starting to eat smaller meals and it’s the same. As a type 1 diabetic I eat a very low carb healthy diet

Anyone else have these symptoms?

Also don’t sleep well and am very depressed

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

Have any of you tried Jardiance 10mg? rather than mitoporol? I was on Mitoporol first, then
on Jardiance 10mg and 12.5 diuretic. Not perfect but much better. I'm 77 so I don't
think surgery is in my future.
Linda

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Profile picture for linda421 @linda421

Have any of you tried Jardiance 10mg? rather than mitoporol? I was on Mitoporol first, then
on Jardiance 10mg and 12.5 diuretic. Not perfect but much better. I'm 77 so I don't
think surgery is in my future.
Linda

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@linda421 I am glad your present drug prescriptions work well for you. Question: Do you mean Metaprolol? We are all different walking chemical factories, we react differently to drug combinations. Your age need not rule you out for surgery, I was 76 three weeks after mine.

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Profile picture for Linda, Volunteer Mentor @walkinggirl

@linda421 I am glad your present drug prescriptions work well for you. Question: Do you mean Metaprolol? We are all different walking chemical factories, we react differently to drug combinations. Your age need not rule you out for surgery, I was 76 three weeks after mine.

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Yes, should have checked the spelling first. better living through chemistry.

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Profile picture for cindy @cindyw9999

@cash298
I’m scheduled for myectomy end of May. Nervous but can’t wait for any chance to get my life back .

I was never told that you need a “wash out” period to get Camzyos out of your system. My gradient has increased significantly and my symptoms as well. Dizziness has subsided

Can’t wait to get back to being active and happy

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@cindyw9999, no doubt you are nervous about upcoming surgery. This is not just any surgery either, and it's totally normal to feel apprehension. The end of May is right around the corner!

I hope you have had a chance to learn what you could from Connect about open heart surgery and preparing for it. From mental preparation to packing, there are a lot of tips here. I posted this last year, and you may or may not find it helpful:
https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery-part-1/
@brumasterj , a fellow member who Camzyos did not work and had open heart surgery details his Camzyos journey and the period of being taken off before surgery. If you have not read his story clink on his link and take a look...it may help you.
Do you have a list of questions prepared to ask at your pre-op visit? May I ask where your surgery is being done?

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Profile picture for cindy @cindyw9999

@cash298
I’m scheduled for myectomy end of May. Nervous but can’t wait for any chance to get my life back .

I was never told that you need a “wash out” period to get Camzyos out of your system. My gradient has increased significantly and my symptoms as well. Dizziness has subsided

Can’t wait to get back to being active and happy

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@cindyw9999 good luck and prayers.. Read a lot and prepare yourself. I was not happy with anything having to do with camzyos from day one, the heart failure clinic in Louisville had no idea what they were doing, had excuses for everything I was feeling and just blew off all of my concerns which were all confirmed by CC. I am so happy to be in my way back to life, the weeks of healing will be worth it.

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Profile picture for cash298 @cash298

@walkinggirl WOW, No pain!!! That would be great. I mostly have chest muscle and nerve pain now, I guess severed nerves healing . I cannot believe that I’m 2 weeks out tomorrow, and the progress. I just keep thinking “ what if this pain never goes away and I never have my capacity back”? I know it’s an unfounded fear but one can’t help but worry. My exp at CC was wonderful, they took such great coats of me and I was in and gone on the 4th day. I am an impatient person so I just ordered the nuvuadermis silicone tape so I’ll be ready. It will be perfect for the pool with my grandkids. Thanks for your response. If anyone has specific questions, it’s still all fresh in my mind 😊

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@cash298 Fears are legit whether you consider them unfounded or not. Of course, worry is fear's partner. We are all so different concerning pain, how intense it is perceived, and how fast it goes away. Has your doctor recommended cardio rehab? Please do ask about it at your next appointment, your muscle recovery and range of motion can be enhanced. Good to read that your nuvuadermis silicone tape is ready for the pool and that you have a forward-life-after-myectomy frame of mind that is including pool time with the grandkids.

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Lot of great support right here for sure!!! I myself did not find i was worried till about a week before surgery! Mainly because i wanted my life back:)
Surgery prep the week of is a breeze and so many great people at the mayo was there cheering me on!! Surgery day was so fast and easy too, and really the days after surgey are bearable the whole staff is so amazing!
My only issue was feeling nauseous several days after surgey which was probaly from the furosemide diuretic
Once i quit taking it i started feeling better!
Good luck to ya and everything will be great:)
I hope your being treated at a center of excellence:)

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Profile picture for cash298 @cash298

@cindyw9999 good luck and prayers.. Read a lot and prepare yourself. I was not happy with anything having to do with camzyos from day one, the heart failure clinic in Louisville had no idea what they were doing, had excuses for everything I was feeling and just blew off all of my concerns which were all confirmed by CC. I am so happy to be in my way back to life, the weeks of healing will be worth it.

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@cindyw9999 I am so glad you advocated for yourself and if CC is Cleveland Clinic, you are going to a very highly regarded heart care institution, about 5 hour well-worth-it-drive from your home. We have family in Louisville, and I had checked out the nearest COE, which is in Cincinnati. I can repeat advice given by Debra @karukgirl about reading https://connect.mayoclinic.org/discussion/what-i-learned-from-my-open-heart-surgery because many of us contributed to that discussion. Here we are back to our lives (some had to curtail some aspects) and telling our tales! Yes, learn all you can and that will help you understand what goes on before, during and after your hospital stay. That will help generate any questions and concerns you may have and help you understand explanations well. Wishing you a productive time and am looking forward to reading your story!

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