Guest guest Posted September 23, 2001 Report Share Posted September 23, 2001 I appreciate all that everyone writes re: PSC, their symptoms, meds, etc. I have learned so much and I am so grateful to find PSC-support group. My heart and prayers go out to Ed and Debbie and their families during these days after their surgeries. I pray for all those that are connected with this support group. I wish I would have known about PSC-support groups years ago. I am thankful I finally found this great group of individuals. My gastro. dr. put me on Urso last week and I was wondering if anyone can tell me how long the abdominal pain, etc. lasts? Do the side effects of this drug go away after your system gets adjusted to it? History: Gallbladder surgery, liver biopsy-1973 Bile duct surgery-76 (connected the bile duct to the jejunum(sp?) 2nd liver biopsy-80 (diagnosed chronic hepatitis) ERCP, liver biopsy-82 (PSC diagnosis)Methodist Hospital-Indiana, Dr. McCune, neg. for UC, or Chrohns. 2nd opinion, ERCP, liver biopsy, etc.-83 (Emory Hosp., Dr. Galambos) confirmed PSC, neg. for UC, or Chrohns. Bile duct-4 large stones, surgery-90-Methotrexate prescribed, IV steroids. 1st TX workup - Emory-Dr. Galambos-91-cholestraymine prescribed. 2nd TX workup - MUSC-ton-95-Actigall presribed. 1996-Saw a gastroenterologist here in Spartanburg and he doubts I have PSC., I hope he is right, after another ERCP he confirms I DO have it. Symptoms have been sporadic over last 6 years, 2000-lost 15 lbs, itching, nausea, etc, infection in ducts, antibiotic regiment, Colestid prescribed. Itching, fatigue, URQ pain returns, gastro prescribes URSO-2001. I have never been jaundice. I am now 47, this all began when I was 19. I believe I alot of my URQ pain is from previous surgeries and adhesions. I may be wrong. Thanks for being there. Pam-SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Pam, As for the pain after taking Urso, I started taking 750 mg at first (switched from Actigall to Urso in 3/01) and never experienced any pain or nausea. When I went to 1,500 a day (6/01), I did not experience any pain or discomfort. My nausea only started in the last month or so. I have always been very tolerant of drugs, no matter what it was. Glad you found the group, I am new as well (3 weeks and counting). They ( we? :-) ) are a wonderful group of people who can sympathize with what you are going through and are a wealth of information. I have been printing out a lot of emails and making my own checklist for when I go back to see the Hep. We often take what dr tell us without being educated and this group will give the resources to ask the right questions and to ease your concerns. Best wishes. Darin Houston, UC-88, PSC-99 (age 32) Quote Link to comment Share on other sites More sharing options...
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