Camzyos Side Effects

I’m pretty sure it was raging a war inside my body. I had dizziness so bad that I could hardly function. The cardiologist kept saying ( can’t be the drug) I was on it for 5 months, before being taken off it. Then was diagnosed with Amyloidosis. Am being treated for that now with the HCM on the back burner.
Have a clearer brain now ( most days)
I’m sorry you had such rough side effects. Hopefully they can get you on something that works better.

Sorry to hear that you had all that trouble.
Glad you are feeling better
My Cardiologist says there no other options.
That Camzyos is the only drug available.
As all the other drugs caused problems for my stomach
He says surgery is not a option.
I saw him yesterday and he was rude like always .
Afraid to even ask any questions he was also saying that my side effects weren't from Camzyos.

There is a new drug "Aficamtem" is in the trial test stage so not approved by FDA jet. Hopefully it can be approved soon so you may have another option.

Here is the weblink for that new drug:
https://cytokinetics.com/medicines-research/pipeline/aficamten/

I hope that may help you.

Thank You...

I am so sorry. The Cardiologist I see didn’t listen to me either. Made me so mad. Now that I’m seeing them not so frequent because this amyloid is the main concern right now. I’m firing him when this is over. He won’t look me In The eye when he talks to me. He did actually apologize that they drug their feet on all the tests they didn’t do. I went to the Mayo in Rochester Minnesota and they did all the test plus more the heart institute was supposed to do.
It makes it hard when you can’t talk to your doc I’m not sure if it’s because they think they are smarter than us or what but people like to be listened to when it their body going through this stuff daily. I asked him, do you think I’m making this up? He didn’t say anything. That just made me madder. I wanted to throat punch him🥊! Then I’d be in jail, and I’d have to fight people, so I refrained LOL!
On a serious note, consider a new cardiologist. Rudeness shouldn’t have to be tolerated. You’re paying for his services. Ain’t right!
Prayers you find some answers. 😊

Thank you so much for your kind words.
I am glad you found your way through all of the bad things and you are on your way to recovery.
I do hope you fire them no excuses for not listening to what you have to say.
I live in FL and was diagnosed in Dec.
I was seeing a cardiologist but he couldn't do anything with the Hypertrophic Cardiomyopathy so he referred me to a clinic in the hospital and my nightmare began🤬
My gradient is high .
I have some calcium in there but he doesn't mention that .
And here comes the bad part I wore a heart monitor and got back on the first results wrong camId number and the wrong time I wore it then got back more results four days later with the right time my name again different cam # and someone else's birth date. I called them and they said it was transcribed by a patch and the second one was mine.
They never did nothing to resolve the problem I don't trust Dr judge ment.
Thank you for kind words .
Feel better

You are more than welcome @holly1275

Please find another Cardiologist that treats patients with Camzyos and ask an opinion about the side effects.

My first 2 weeks I got some dizziness and I was taking also (Coricidin for a bad cold which will make the dizziness worst). Because my muscle blockage in my heart was starting to reduce from 2.2 centimeters to 1.4 cm in only two months of camzyos, I felt something inside my heart that was kind of strange as if "someone was very slowly manipulating that blockage". I tried to relax and I avoided being in panic so all is working in only 2 months a lot better in my heart and the blockage reduced from this huge size of 2.2 cm to 1.4 cm which is considered a mild blockage compared to the 'severe blockage of 2.2 cm'. My dizziness was temporary and was not all day long no way it was for a few seconds on and off for a couple of weeks. Now I am not dizzy anymore and I do not feel any strange thing manipulating inside my heart.
I hope my experience helps you in some way. God bless you and protect you.

I am glad you are feeling better and Camzyos worked for you.
I can't say the same for me, I was only on it for ten days and my joints starting burning on 5 mg. I couldn't sleep bad chest pains.
Called my Cardiologist and his assistant made a appointment.
When I explained my symptoms he basically said stopped taking it then.
He was rude and said what do you want me to do.
He basically in the past said there is no other option.
I've tried other medication in the past but my stomach wouldn't have it .
So now I've got to try and find another Dr that knows how to treat Hypertrophic Cardiomyopathy not a easy thing in my state.
I will if I can get in go to Mayo Clinic I four hour ride from my house.
Thank You For Your Reply Best Wishes

HI @holly1275 ,
Please try to go to the Mayo Clinic that is 4 hour from you. Here is their weblink:
https://www.mayoclinic.org/
Click on the upper right side where it says Login, then click where it says "create an account" then follow the prompts. After you create an account go their weblink: https://www.mayoclinic.org/
Then click on request an appointment, then you will select the Mayo clinic city location that you have closer to where you live. Each location has a "Central Appointment Office" phone number with their open office hours". Please call that number during their office hours and make an appointment. The Mayo Clinic is the best for cardiology in the USA so take advantage it is 4 hours from where you live. I am sure they can help you even when you cannot take camzyos. May God bless you and I will pray for you.