Remicade and Heart Problems

Hi all, has anyone experienced heart problems from remicade? I’ve been on Remicade for 8 years with little to no problems. I’m otherwise healthy, in my 30s, low cholesterol, low to normal blood pressure, and average weight so shouldn’t be at risk for heart disease. I’ve also had rigorous work ups in the past with nothing other than potentially POTS found. My last echo was 2 years ago and perfect. 5 minutes in to my last at home Remicade infusion I was hit with the worst crushing sensation in my chest, like the weight of the world was on me. My blood pressure went up and the nurse said my color changed and she called an ambulance. I started to feel better by the time I was settled in a bed at the er. They did a bunch of tests but didn’t find anything and told me to follow up with my cardiologist. Cardiologist figured it was all fine but sent me for an echocardiogram just to be safe. Well it came back yesterday with abnormal results showing 2 regions of my left ventricle are weakened and not functioning correctly. None of it really makes sense and I have to go for more tests now to figure out why this suddenly happened. Until they can rule out the Remicade I have had to skip my infusion which potentially leaves me open to a flare. Quite worried about what we are going to find.

Thanks 73monte, yeah I can’t wrap my head around having this issue at this age. I’ve only seen warnings in the list of side effects that Remicade can rarely cause damage to the heart or heart attack but it’s exceedingly rare. I would think it would have happened early on when I first started not now.
They can’t give me treatment options until they identify the cause unfortunately.

So based on the follow-up tests the cardiologist thinks it was a type of infusion reaction. Told me I could try it again but couldn’t tell me whether or not it would happen again or make things worse. I’m at a loss. Waiting to hear back from my GI.

Hi Clo, My heart is compensating and the output is normal which is great. As for the rest it’s unclear. My GI spoke to me at length about it today and honestly did a better job than the cardiologist at explaining the heart. He said it’s impossible to figure out exactly what caused this. It could recover. The cardiologist recommended a 1 or 2 month follow up echo. The GI said it’s like the heart got injured and actually a lot of things can cause it from medications to myocarditis to stress ( takatsubo- broken heart syndrome) because we can’t pin point the cause ( but I had that horrible chest discomfort so that should be a good indication) it’s better to not risk the Remicade making things worse. He said once you have a reaction the next reaction is worse so if that is what it was the next could be really bad. I’ll be moving on to Skyrizi. Mixed feelings about this. It’s the end of an almost 9 year era for me.

So sorry to hear this, Lab. Hope you’re feeling better now. You mentioned that your GI explained that it could be caused by an allergic reaction. Though Remicade had caused me crazy rash and itching, your GI is correct when he decided not to try it again. My GI thought then that there was something wrong with the infusion and let me take the following infusion. The itching was crazier and he had put me on corticosteroids for months until things became better. I stayed on Remicade for almost 7 years where I was almost in remission though neither my lab tests nor colonoscopies showed that but I had never felt that my disease was under control as I did when I was on Remicade.
Skyrizi sounds a good option but I don’t know whether you’ve tried Stelara before or not. Given that I had failed Stelara, my GI thought that I would have no response to it as I did to Stelara.
Rinvoq was working well the first year but then I developed one of the rarest side effects: blood loss and easy bruising due to platelet dysfunction. We added Entyvio to Rinvoq but honestly, both can’t control Crohn’s as Remicade used to. Good luck with Skyrizi.