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Scary remicade reaction. Should I be concerned?

I have been on Remicade since November for my Crohn's, Uveitus, and joint issues. I go every 8 weeks without a problem. However, my infusion today really scared me. Not long after Remicade was started I began to feel a tightening in my chest. It hurt. It felt, honestly, like someone sitting on my chest. It became very difficult to breathe. I could only take short breaths. That went away for the most part about half way through, although i still feel it a little. My blood pressure was roughly 108/86 when I arrived. By the end of the infusion it had dropped down to 82/53. My nurse seemed a little worried, but she didn't say anything. Then again I didn't tell her about the pressure or the odd breathing. I also slept the ENTIRE time. It took four hours because they had to slow it down. I felt like I was in a coma, when I never sleep during infusions. Should I be concerned about this? Help please! I am very worried.
 

Jennifer

Adminstrator
Staff member
Location
SLO
I would let your doctor know right away. Is there an on call nurse/emergency line you could contact and see if they think you should go to the ER? Have you taken any Benadryl to see if that helps you feel at least a little better for now? My I ask why you didn't tell the nurse about your symptoms? Its very important that they know how you're feeling. Definitely sounds like an allergic reaction so I'd start calling around to see if you need immediate medical help now and see your doctor well before your next infusion.
 
I would let your doctor know right away. Is there an on call nurse/emergency line you could contact and see if they think you should go to the ER? Have you taken any Benadryl to see if that helps you feel at least a little better for now? My I ask why you didn't tell the nurse about your symptoms? Its very important that they know how you're feeling. Definitely sounds like an allergic reaction so I'd start calling around to see if you need immediate medical help now and see your doctor well before your next infusion.
I was given Benadryl before my infusion, as well as a high dose steroid. I didn't tell my nurse because I was so out of it the whole time. My mother was there with me and she we watching over me. I'm just terrified that they'll tell me I can't have it anymore. They just almost took me off of it due to multiple infections and I really don't want to give them any more reason to go ahead an do it. I know that sounds really stupid, but when Remicade is the only medicine that brings me any relief. I don't want to go back to being without it. My mother works with doctors, and she's friends with my GI, so I'm sure she'll say something to them tomorrow.
 

Jennifer

Adminstrator
Staff member
Location
SLO
I understand your reasoning, I really do. Just be careful. There are other meds out there besides Remicade if you do have to be taken off of it. Did you tell your mom about the symptoms you were having during and after the infusion?
 
I had the same reaction in February after I got home from Remicade, felt like i was having a heart attack, I normally only get lower back pain from remicade. Hours later (3 am) my husband was taking me to the ER, EKG was ok and was determined that I had a reaction to the remicade, I had not had an infusion since Thanksgiving so that is what my GI thought, I am concerned about getting it again, now I'm going to wait until after my MRI since they found a lesion on my liver so I'm more concerned about that.
 
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