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UC taking drug Humira

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Ulcerative Colitis
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Posted 10/11/2007 11:09 AM (GMT -8)
Hi, my 13yr old daughter was diagnosed with UC in 2002, since then we have had all the surgeries and tried all the Rx's you can all imagine.  Well she know has pouchitis and has been on Humira for 6 months now, which has worked great.  Now she is anemic and losing her hair.  Has anyone else been on this drug?  I'm to the point where I think maybe she should have the colostomy back, my main concern is the long term effects of these drugs on a young child. 

 

Post Edited (Mucci) : 10/11/2007 1:20:50 PM (GMT-6)

Posted 10/11/2007 4:21 PM (GMT -8)
Hi, welcome to Healingwell :) Humira hasn't been approved for Uc here (or at least I don't think it has???) so many here aren't on Humira yet but I know that some Crohnnies are. You can ask your question over on our Crohns forum too if you want. If she had the surgery, why is she on Humira anyway?
Posted 10/12/2007 11:16 AM (GMT -8)
She has chronic pouchitis After the surgery she lasted maybe 3 months off all the meds and then started all over again. They didn't think Remicade would work cause she was on 6mp and some others and they never worked. So it was basically a last ditch effort. No Humira isn't approved for UC but the Dr.'s managed to get her approved to be on it. It definatly is a miracle drug, besides the losing hair. My main concern is the long term effects of these drugs on a young girl.
Posted 10/12/2007 1:58 PM (GMT -8)
I just throroughly read about Humira and I can say this, that sure is some scary stuff! I agree that a long term usage of this drug can definately cause any parent to worry. If she is unable to take Humira (or if you have her stop) what other choices does she have? Is there a reason why she is having chronic pouchitis that they can determine?
Posted 10/12/2007 4:48 PM (GMT -8)
This is basicaly a last ditch effort, if this doesn't work then she has to have it reversed and live with a colostomy bag.  How do you explain to a young girl that she is better off with the bag then taking the drugs.  We have always dealt with the GI peds at Boston Childrens Hospital, they have all been wonderful, but I'm wondering if I should maybe look at getting a second opinion.  But the problem is I have no idea where else to go, we live in Albany,NY. There is only one pediatric GI dr around here and will never go back there again.  These past 4 1/2 years have been mentally and emotionaly draining. 

 

Posted 10/12/2007 6:24 PM (GMT -8)
Hi Mucci, so sorry to hear your troubles. Perhaps you can find a good GI ped doctor you can travel to for a second opinion. Your previous test results can be brought with you and you can get his/her opinion on the current course of action. I went to Jefferson hospital in philadelphia for a second opinion and only needed to go one time. Hopefully someone here can give you there GI doctors name and hospital if they live anywhere near. I don't know the closest big city to Albany.
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