On Camzyos with new pericardial effusion.

Posted by andyherman3 @andyherman3, Jun 4 5:23pm

I have been on Camzyos since Oct 2023 with decent results and a normal gradient after starting. I have been significantly more short of breath the past month and developed peripheral edema of my ankles and feet last week (new for me). I went for an echo today and my gradient on valsalva went from 0 to 49 but I have also developed a new pericardial effusion. My cardiologist says that Camzyos is reported to rarely case this and we are stuck between raising my dose from 2.5mg to 5 mg or stopping the drug (if it is contributing to the pericardial effusion). We decided to increase to 5mg for a week and repeating the echo. Has anyone else experienced a pericardial effusion or know if this is a “real” side effect of Camzyos or one of the many things listed that almost never happens. I don’t want to stop the medication yet, unless I really need to. Thanks for any feedback others may have.

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

https://www.camzyos.com/taking-camzyos/safety-and-side-effects
Hi @andyherman3, that must be scary for you!
I posted the above link from the Camzyos page and did not see pericardial effusion listed, but the information said not all side effects are listed, and your doctor should call to report if they believe this is a side effect.
I would be hesitant to increase the dose if your doctor already thinks this may be a side effect of pericardial effusion! But it sounds like you will be getting a new echo in a week, right?
While we wait for others who may have the same side effect of pericardial effusion due to Camzyos to chime in here, are your symptoms any better?

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Only your doctor can advise you on your serious condition. If your HCM has gotten worse it can cause pericardial effusion as well, you are currently on the lowest dose, it could be time to increase Camzyos but like I said only your doctor can advise you. Keep your appointments and Echo appointments and you and your doctor will make the right choices for you.

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Follow up…I had another echo one week later and after increasing my Camzyos from 2.5mg to 5mg daily my gradient decreased from 49 to 17 (so the effects are rapid). My pericardial effusion has not changed yet. Another echo in about 3 weeks and if no change, then will consider draining with cytology.

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