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Heart/lung issues on Remicade

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Crohn's Disease
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Posted 1/11/2008 2:23 AM (GMT 0)
My 14 year old daughter is having some serious heart/lung issues. She always experiences heart arrythmia (pounding, racing, irregular beating - immense fatigue) after a Remi infusion, which usually lasts 3 days to 2 weeks. This 8 wk cycle it never went away, instead grew worse, waking her up at night, etc. Her GI brought her in for tests and found she has atelectasis of the lung, meaning some right lung collapse, fluid where there should be air. Have any of you experienced this and what does this mean? Her Remi has been cancelled this Friday and so we pray the Crohn's will not kick up. Fortunately, she is doing well there. We've been following SCD religiously for about 6 months and she has been improving enough to get off two meds (pred. and 6-mp due to toxic liver levels). The GI is reluctant to give up Remi as her Crohn's was a a doozy to get under control since dx 8 months ago. Now we are off to the cardiologist. Words of wisdom, insight out there?
Posted 1/11/2008 3:18 AM (GMT 0)
My first side effects from Remicade (after being on it for a while) were pounding, racing and irregular heartbeat. I also felt like I was getting hot and flushed. It was very scary. No nurses were around, so I just got through the experience and didn't say anything. The next time it happened but worse, and I said something. They didn't seem overly concerned. The following time, a nurse came in and asked me if I had experienced any side effects. I mentioned that heart thing and she said that that was a serious side effect and that they would not give me anymore of the Remicade at the infusion center. I had to get it at the hospital with close monitoring. Well, the first hospital one was fine. The next time I had the problems, but worse along with severe stomach pains, fever, and difficulty breathing. I had to stop Remicade. After that from time to time I would have heart racing. Then my heart got stuck racing so fast I could not count the beats per minute. I went to the ER and was told my heart was in atrial fibrillation. The top part was going about 300 beats per minute, while the bottom part was at 180 beats. It was so scary. I don't know if it was somehow caused by the Remicade, but your daughter needs to see a cardiologist. I am now on Humira with no side effects and wonderful control of my Crohn's.
Posted 1/11/2008 3:48 PM (GMT 0)
Thank you so much for sharing your experience. It is a tight-rope, is the treatment causing other serious problems? This will be her first time outside the 8 week marker for Remi. Wondering how she'll navigate that, while we are waiting to get a cardiologist appt. It just seems the Remi is hard on her body. Is that what you felt? I'm so glad you were able to reach for Humira and continue doing well. Is there a wait time for switching to Humira after being on Remi? The doc did mention it as a possible next step. Thank you again for your help.
Posted 1/13/2008 3:01 AM (GMT 0)
I don't remember my time frame exactly. Sometimes all the meds run together over the years. I think I had problems because I was given Remicade when it was brand new on the market. It was before they knew that you had to give it as frequently as they now do. I had it like three times, but not at regular intervals and didn't have good results, so it was stopped. Then years later (2 or 3?) is when I was given it in the way they do now. That's when I began with the heart issues. I'm sure that I had developed the antibodies by then, but didn't know about that problem. The Remicade was hard on me, but I was so sick then too, so it's hard to know exactly. I'd be wiped out the entire day of the infusion and even the next day. It was about a year or two later that I started the Humira. This is the first and only thing that has worked for me. I hope your daughter finds something that will work for her. You are right about it being a tight-rope. Oh, I also have had atelectasis before, but I don't remember if I was on Remicade at the time.
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