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Do I have PSC

A few months ago I was diagnosed with PSC, since my liver enzymes ALT and AST got really high through the year. I also lost a lot of weight (20 kilograms) and got hospitalized a couple of times due to vomiting, nausea, abdominal pain and acute diarrhea.   After I started taking ursolit pills 100 milligrams twice a day. Those enzymes got back to normal. But after a month of taking ursolit I started  having reflux and started feeling bad and got hospitalized again with the same symptoms plus a high fever. Then I stopped taking Ursolit for 2 weeks to see if those enzymes got high again (they did) and then my doctor told me that I have to start taking Ursulit again but this time 200 milligrams twice a day. After 3 weeks I made a blood test and saw that Alkaline Phosph. Got really high, I took the test again and it got even higher. (I should emphasize that ALT and AST get high when I stop taking ursulit but alkaline phosph was always normal until I started taking Uruslit in this higher dose.)
What should I do?
My doctor told me to increase the dose to 300 milligrams 3 times a day because of the raise of alkaline phosph but that seems really odd to me that after taking a double dose of a drug that's supposed to help me, instead I get worse.
Thanks for your help
If youb need any results of the tests just let me know
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Avatar universal
Thanks.
I went through MRCP and Liver biopsy.
MRCP (MRI) result was that there was little bilary paths.. and that liver veins were enlarged. It also said that there is a suspician that it might be PSC.
The liver biopsy didn't show anything serius.
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Avatar universal
I am not a physician or specialist in any field of medicine. I am a transplant recipient whose underlying disease was hepatitis c. I know a little about PSC as a result of my interest in liver diseases and liver transplantation so take anything I say with that in mind.
The diagnosis of Primary Sclerosing Cholangitis (PSC) is usually made by endoscopic retrograde cholangiopancreatography or magnetic resonance cholangiopancreatography(MRCP) or endoscopic ultrasound . Have you had any of these procedures? I assume you probably have if the diagnosis of PSC has been made.
Ursodiol has been and is being used as treatment for PSC and can improve laboratory results but the long term outcome is uncertain. If you have cirrhosis my understanding is that the generally accepted treatment is liver transplantation. I have a friend who was transplanted for PSC in June 2000 and she was doing well a month or so ago when I last spoke with her. She also has ulcerative colitis which is commonly associated with PSC.
If you do not have cirrhosis you might discuss with your doctor other options including extrahepatic biliary resection. Here is a recent article which addresses this approach.

Primary sclerosing cholangitis: role of extrahepatic biliary resection.
Pawlik TM, Olbrecht VA, Pitt HA, Gleisner AL, Choti MA, Schulick RD, Cameron JL.

Department of Surgery, Johns Hopkins University Hospital, Baltimore, MD 21287, USA.

"BACKGROUND: Most centers advocate orthotopic liver transplantation (OLT) for patients with primary sclerosing cholangitis (PSC) and cirrhosis. Management of PSC patients without cirrhosis remains controversial. We examined the results of extrahepatic biliary resection (EHBR) for PSC. STUDY DESIGN: Between 1981 and 2006, 126 patients with PSC underwent EHBR (n = 77) or OLT (n = 49). Data on biliary drainage procedures, perioperative morbidity, and longterm survival were collected and analyzed. RESULTS: Of 77 patients undergoing EHBR, mean preoperative bilirubin level was 5.6 mg/dL. Nine (11.7%) patients had cirrhosis. Most patients had preoperative biliary drainage (ERCP, 61.0%; PTC, 67.5%). At operation, 73 (94.8%) patients underwent EHBR, including hepatic duct bifurcation. Most patients also had insertion of bilateral transhepatic silicone elastomer biliary stents; 4 (5.2%) underwent EHBR with stent insertion plus hepatectomy. For EHBR patients, perioperative complication rate was 38.7% and 30-day mortality was 3.9%. Bilirubin levels significantly decreased postoperatively (mean drop 3.8 mg/dL; p or= 2 mg/dL and history of cirrhosis (both p < 0.001). In patients undergoing EHBR, noncirrhotic patients had significantly better longterm outcomes versus cirrhotic patients (10-year survival, 60.2% versus 12.0%; p  60%. OLT should be reserved for patients with PSC and associated hepatic cirrhosis."
See: http://www.ncbi.nlm.nih.gov/pubmed/18471705

Your dose of Ursodiol is within the dosing range that I saw published in articles when I researched this subject.

I wish you good luck,
Mike
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