Has anyone stopped taking camzyos? I have stopped and feel very sick.

Exactly what I needed. Many thanks!

Very helpful!
Thank you so much.

I was told two weeks was all the Camzyos withdrawal time I needed prior to septal myectomy at Cleveland Clinic. You mentioned a couple of side effects. Have there been others? I imagine a lot of people have had to discontinue Camzyos due to side effects. Would love to know more about their experiences. Camzyos Rems pharmacist said they had no data about withdrawal pains. I haven't stopped yet because I don't have an appointment date for surgery.
Was also told I needed to wait two weeks after any vaccine. I plan to have the new COVID shot prior to surgery since the virus is on the move again.

dbrima
I googled your question and found MedicalNewsToday.com. Don't know if Bristol Meyers Squib would have a different answer but MedicalNT says, ". . . the drug stays in your body for about 30 to 45 days."

Hello @dbrima,
I have had you in my prayers and hope that you are doing well after your surgery. It's been about a month now? When you are feeling up to it, can you share your experience? Are you feeling better? Did everything go well for you?

It has been a hard month. I still need to drink so much water, potassium is very low and just got off of diuretics as a trial, as I am still retaining water. I didn’t expect that to continue. I guess I am at the point of adjusting medications. I still cannot drive but pain is much better. Thank you so much for checking in with me.

Hi dbrima,
Is your potassium low because of all the water you still have to drink? Have you been instructed to repace potassium with pot. rich foods? When you fell up to it, please say more about your surgery experience and where you had it. And would you mind saying what your surgery entailed and give your age?
71 and Anxious in Boulder

I am 34. I tried camzyos and was very sick for 7 months. Surgery pain was not as bad as others describe. My numbers are still off with kidneys and potassium. I was on heavy diuretics before surgery, gained 30 pounds during surgery (which is normal) and after 3 weeks still needed diuretics to get off all the water weight. Potassium has been low for a year- sometimes to a crucial level where I was getting potassium infusions. It is still low and so I have been taken off of diuretics. You will feel lousy for a few days and I still don’t feel quite right yet. But nowhere as horrific as some of the adjectives used to describe this surgery. I think the worst part is the anxiety before. This has been unpleasant but not as scary as I went in thinking it would be.

Yes, I waited 30 days before septal myectomy off of camzyos

I am so glad to hear you are home, feeling not as terrible as before the surgery. It's hard for people who have not had open heart surgery to not fear it...and once you go through it, yeah, it's rough, but not hideous torture like we imagine in our minds. It is a big surgery, but the build up is the worst part. It's hard to convey that to those who still face it, and words are only words, but we try our best to be honest, and put others minds at ease. Easier said than done.
Low potassium sounds like it is definitely an issue for you, and I'm sorry you have such difficulty getting that back in order. It sounds like a side effect of the diuretics? Your poor little heart was working so hard, and beginning to fail it sounds like. Mine was beginning to fail too and the water retention was a result of that. But I was no where near the extent you are. I pray you heal quickly and begin a new life without HOCM!
When do you go back for a post-op visit?