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Ulcerative Colitis
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Posted 4/20/2010 4:57 PM (GMT 0)
Daughter got septic hip 4 days after 2nd infusion. Yesterday she tried for the 3rd infusion and 3 minutes into it she had a severe reaction (airway blocked, red face, purple face, hives one on top of the other, arms red with rash). Now the Dr says she can try it again? What?! Anyone with experience of reaction, I'd like your opinion. The Remicade did wonders for her joints and UC but is it to blame for the hip?
Posted 4/20/2010 8:23 PM (GMT 0)
     Didn't they give her Benedryl prior to the Remicade?  I developed antibodies after my 3rd infusion, stuck it out for the 4th to no avail.  Now on Humira.  Nine years old?  God I feel soooo bad for these children who suffer so.  What in the world is causing this I wonder?
Posted 4/20/2010 9:00 PM (GMT 0)
I am so sorry-what an ordeal! Your poor daughter, and you poor mama. I really am not sure about the septic hip-did your doctor think the Remicade was responsible?

After that reaction, I would be reluctant for myself, let alone my child, however, I can say that the nurse who is in charge of infusions at my GI's office has said they have people who DO react to it every time, but they choose to continue getting it because it helps them so much. Those people get benedryl before every infusion. So I guess it is an option, if the medication works well for her otherwise and you are willing to take that chance.

Good luck making that decision-that is really tough! I certainly don't envy your position of having to make this choice. I'll be saying a prayer for you for guidance.
Posted 4/21/2010 1:26 AM (GMT 0)
Wow, that sounds like a pretty severe reaction to me. What about the Benadryl? Was that administered before the infusion? If not, why not? If so, what do they plan to do to prevent an even worse reaction next time? What if her airway closes? This sounds really scarey to me. Is this reaction something that they think her body will build up an immunity too? I would ask a LOT of questions before subjecting her to another treatment. Maybe Humira would work better, since it has no mouse protien???
I'm so sorry to hear about what you are going through with your daughter. Please keep us posted.
Posted 4/21/2010 3:42 AM (GMT 0)
I get side effects from the remi but not that severe.  I get tyleonl and hydrocrotison before my infusion.  I also get my infusion ran really slow.  At 65.  I'm there from 9-2:30 every infusion.  I would be scared to try it again.  I'm sorry you have to go through this.  I can't imagine.  it is hard enough as a grown adult to have this. Your pour child.  I really don't know what you should do but maybe have them run it slower and do a steriod or bendryal before.  Oh i also take zyrtec before my infusion.  Good Luck!!  I feel so bad for you and your child.
Posted 4/27/2010 10:09 PM (GMT 0)
She did receive benadryl, but only 10 min before they started the infusion. Then they turned it on full rate, instead of at 50 like in the past. Not sure why all the changes, maybe they were packed. Regardless, we are not willing to risk her airway closing again. It was very scary and it took a big does of salimedrol to get it open again. I am terriffied to try Humira for the same reason. We are pulling back and trying Entocort.
Posted 4/27/2010 10:38 PM (GMT 0)
After an allergic reaction with breathing problems, I wouldn't try the medication again. That said, I've also heard of people being given a single dose of IV steroid before starting the Remicade with good results.

I'm sorry she had this problem, Big Dog. If you do decide to try Humira, she may not have the same problem because it contains human protein instead of the mouse protein found in Remicade.
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