My 21 year old son has uc and primary sclerosing cholangitis of the liver. I am worried about all the meds they are giving him for these two diseases. On the 11th he received his first infusion of remicade for the uc, because the prednisone wasn't helping his flare-ups. Of course he is taking asacol, imuran, and an iron med for the anemia his has from the initial flare-up that started in Feb. 2006. In May of 2006 he was diagnosed with uc and psc. He has had about 5 or 6 flare-ups during the year and would always have to go back up on the prednisone. So the gi guy we go to decided to put him on remicade. Of course the handout they gave him after the infusion was so scary. I am having second thoughts about getting a second opinion. We go to the specialist for his psc in St. Louis on the 29th. Thinking about asking him what he thinks about the remicade since he is a gi guy, also. I have read some of the posting on this sight and I guess we will have to wait and see how his initial reaction to the first infusion is before making a decision on the second opinion. I just need some stories on the side effects of the remicade. I know everyone is different and meds affect everyone different. I am just a worried mom who needs some reassurance and hope. The psc is incurable and my son will probably have to have a transplant in l0 years. We know the specialist is doing what he can to prolong the time for transplant by giving my son Urso. That is another med I would like to know more about from people who are taking this med. Thank you for listening. And I would appreciate any input.
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