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UC and Primary Sclerosing Cholangitis


Mon, March 22, 2010 12:00 AM

Hello,


Does anyone else have a child with both Ulcerative Colitis and Primary Sclerosing Cholangitis? I would be interested in what meds and supplements your child takes. 

Thank you!

Diane22

FPO diane22
Joined May 6, 2009

Tue, March 23, 2010 4:22 PM

 Reply posted for Diane22.

Hi Diane,

My daughter was also diagnosed with UC and PSC.  After being diagnosed she was sent to a specialist at Washington Hospital Center for some testing and they found that one of the main bile ducts was restricted.  They weren't sure if it was due to the inflamation in the liver or a structural issue.  Her liver counts were so high he decided to put a stent in her liver for 8 weeks to reopen the duct.  We have been pretty lucky since her levels have all remained good since then.  They continue to monitor her liver, though.  Her UC has only progressed to get much worse over the past 2 1/2 years.  They have tried I think every medicine that is available with different combinations.  I was always very worried since so many of the UC medicines state that they have side effects that cause problems with the liver.  It all seems so crazy to take something to fix one thing yet may harm another.  We have been to 4 different specialists and the biggest thing I found was to have a doctor that was always on top of constant blood work.  I left Children's Hospital because of a very casual approach to her meds and testing.  Hopefully, you have a doctor that you are comfortable with.  The last thing that my daughter has tried is Humira. She is now up to weekly shots and they don't seem to be doing anything.  If you find a med that works for your child, I would just say to stay on top of the blood work.
Praying for you,
Linda

FPO llapera
Joined Mar 22, 2010

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