Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Hi my name is terri and I was diagnosed at the age of 13, how did you find out she had psc and does she have any symptoms? I hope you will find this group help full. Hope all is well with you and your daughhter Terri(15) South Africa New to this > Hi > we are Jim & Elaine and our 18YR OLD daughter Leanne has been > diagnosed with PSC,colitis & diabeties. > So this is all new to us.We are trying to find out about psc and > what the future holds for our daughter. > She has been attending the Radcliffe Hospital Oxford under > Doctor Chapman.Who we know is very good with psc patients. > We hope that by joining this support group we will be able to gain > information from other sufferers and carers. > > hope to hear from you soon > > Jim & Elaine > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2004 Report Share Posted February 5, 2004 Hi Phoebe; Many have commented already about your high-dose ursodiol question, but I thought I would also reply. In England, " high-dose " ursodiol is considered to be about 20 mg/kg/day; whereas in the U.S. it is considered to be about 25 - 30 mg/kg/day. My son is currently on a dose of about 24 mg/kg/day. __________________________ Gastroenterology. 2001 Oct;121(4):900-7. A preliminary trial of high-dose ursodeoxycholic acid in primary sclerosing cholangitis. SA, Bansi DS, Hunt N, Von Bergmann K, Fleming KA, Chapman RW. Department of Gastroenterology, Oxford Radcliffe Hospital, Oxford, England, UK. BACKGROUND & AIMS: Ursodeoxycholic acid (UDCA) is used for the treatment of cholestatic liver diseases including primary biliary cirrhosis (PBC) for which it has a positive effect on laboratory values, may delay the development of liver failure and prolong the transplant-free disease period. Standard doses of UDCA (8-15 mg/kg daily) have been shown to be ineffective in the treatment of primary sclerosing cholangitis (PSC). We report on the findings (clinical, biochemical, histological, and cholangiographic) and side effects of a 2-year double-blind placebo-controlled preliminary study of high- dose UDCA in PSC patients. METHODS: Twenty-six patients with PSC were randomized to high-dose (20 mg/kg daily) UDCA or placebo. Cholangiography and liver biopsy were performed at entry and after 2 years. Symptoms, clinical signs, and liver biochemical tests were recorded at 3 monthly intervals. RESULTS: High-dose UDCA did not influence symptoms, but there was a significant improvement in liver biochemistry (serum alkaline phosphatase, P = 0.03; gamma-glutamyl transferase, P = 0.01) and a significant reduction in progression in cholangiographic appearances (P = 0.015) and liver fibrosis as assessed by disease staging (P = 0.05). In the treatment group, a significant increase in total bile acids and saturation with UDCA >70% confirmed patient compliance. No significant side effects were reported. CONCLUSIONS: High-dose UDCA may be of clinical benefit in PSC, but trials with a larger number of participants and of longer duration are required to establish whether the effect of high-dose UDCA on liver biochemistry, histology, and cholangiography in patients with PSC is translated into improved long-term survival. Publication Types: Clinical Trial Randomized Controlled Trial PMID: 11606503 ______________________________________ Am J Gastroenterol. 2001 May;96(5):1558-62. High-dose ursodeoxycholic acid as a therapy for patients with primary sclerosing cholangitis. Harnois DM, Angulo P, nsen RA, Larusso NF, Lindor KD. Division of Gastroenterology and Hepatology, Mayo Clinic and Foundation, Rochester, Minnesota 55905, USA. OBJECTIVES: To assess the tolerability and efficacy of high-dose (25- 30 mg/kg per day) ursodeoxycholic acid (UDCA) in patients with primary sclerosing cholangitis (PSC). METHODS: Thirty patients with PSC were enrolled in this pilot study and treated for 1 yr. Changes in the Mayo risk score at 1 yr of treatment and projected survival at 4 yr were compared with that observed in patients randomized to placebo (n = 52) or UDCA (n = 53) at a dose of 13-15 mg/kg per day. RESULTS: A marked improvement in serum alkaline phosphatase activity (1265+/-172 vs 693+/-110 U/L, p < 0.001), AST (161+/-037 vs 77+/-13 U/L, p = 0.001), albumin (4.0+/-0.1 vs 4.2+/-0.1 g/dl, p = 0.03), and total bilirubin (1.6+/-0.3 vs 1.3+/-0.2 mg/dl, p = 0.1) occurred at 1 yr of therapy with high-dose UDCA. Changes in the Mayo risk score after 1 yr of treatment were significantly different among the three groups (p < 0.001), and these changes would be translated into a significantly different expected survival at 4 yr (p = 0.05). This expected survival at 4 yr was significantly different between placebo and the dose of 25-30 mg/kg per day (p = 0.04), but not between placebo and the dose of 13-15 mg/kg per day (p = 0.4). High-dose UDCA was well tolerated. CONCLUSIONS: UDCA at a dose of 25-30 mg/kg per day may be of benefit for patients with PSC, and this regimen deserves further evaluation in a long-term, randomized, placebo- controlled trial. PMID: 11374699 __________________________________ Best regards, Dave > > When you say " high dose " ursodiol, how many mg/day are you talking about? > Phoebe > Re: New to this > > > Hi Jim and Elaine; > > Welcome! I am so sorry to hear about Leanne's diagnosis of PSC, > colitis & diabetes. I think I know what you must be going through, as > our 18-year old son, , was diagnosed with PSC and ulcerative > colitis last summer. > > On the positive side, you have found the right support group to seek > advice and help, and you are very fortunate to be under the care of > Dr. Chapman at Radcliffe ... he is very highly regarded. Was > Leanne initially diagnosed because of elevated serum liver enzymes, > or other symptoms? As Dr. Chapman may have explained to you, the rate > of disease progression is highly variable in different patients and > it could be many, many years before Leanne experiences severe > symptoms from PSC. Some medications may be helpful. Our son was > initially diagnosed because of elevated serum liver enzymes. He is > currently asymptomatic, and since being placed on high-dose > ursodeoxycholic acid (ursodiol) his serum liver enzyme levels > (alanine aminotransferase (ALT), and aspartate aminotransferase > (AST)) have nearly normalized. Dr. Chapman is one of the main > proponents of high-dose urodiol in the treatment of PSC patients. > was also placed on Asacol (mesalamine; a 5-aminosalicyclic > acid (5-ASA) compound) for ulcerative colitis, and we believe that > this is helping him more efficiently assimilate food. Has Leanne also > been prescribed ursodiol and asacol? > > Like you I have been trying to find out all I can about PSC and what > the future may hold. I've put together a web site that gives links to > a large number of web sites and research abstracts, and this may save > you some time searching the internet? > > http://home.insightbb.com/~rhodesdavid/ > > If its any consolation, there have been many advances in the > understanding of the genetic basis of these diseases in the last few > years, and this is leading to new treatments. Perhaps 10 years from > now the medical advances will result in much more effective therapy? > It is this thought that keeps me going and avidly reading the > literature concerning the latest advances. > > If you have any questions please feel free to ask. > > Best regards, > > Dave > > (father of (18 yr); dx PSC 07/03; dx UC 08/03) > > > > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Hello Jim / Elaine, Sorry to hear about your daughter's diagnosis. I am a fellow sufferer ( psc / uc ) living in London. This can can quite overwhelming at first but the bottom line is that you cannot put your life on hold bacause of what might be. Your daughter still has her whole life ahead of her and I know of other sufferers that have lived with the complaint for 35 years before consideration for tx. You may find the following links useful for reference : http://www.medicinenet.com/Primary_Sclerosing_Cholangitis/index.htm http://www.gicare.com/pated/ecdlv35.htm Tony B ( uk) psc 98, uc 99 -- New to this Hi we are Jim & Elaine and our 18YR OLD daughter Leanne has been diagnosed with PSC,colitis & diabeties. So this is all new to us.We are trying to find out about psc and what the future holds for our daughter. She has been attending the Radcliffe Hospital Oxford under Doctor Chapman.Who we know is very good with psc patients. We hope that by joining this support group we will be able to gain information from other sufferers and carers. hope to hear from you soon Jim & Elaine Quote Link to comment Share on other sites More sharing options...
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