Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 That would be good news for me - I've been taking it since late 1977. Unfortunately, my first PSC symptoms occurred in 1999. Hmmmmm. I'm a bit skeptical, at least for my situation. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Barb Henshaw Contrary to the title of this story (this isn't a new drug, I've been taking it for well over 14 years, and know Arne is also taking it, not to mention others.) I wonder too if alcoholics would/could benefit from it (mainly because if they were health conscience enough to take it, they would probably quit drinking). Still...if it could help anyone, prolong time to transplant, or prevent the need altogether, that's a very good thing! Barb in Texas New drug may heal liver Clara Pirani, Medical reporter September 25, 2006 SCIENTISTS have discovered a drug that they predict could prevent liver disease, even in alcoholics. Tests on the drug, which is already used to treat inflammatory bowel disease, found that it prevented scarring of the liver and even reversed liver damage. Day, a liver specialist from Newcastle University in Britain who led the research, said sulphasalazine could provide an alternative to liver transplants.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 That would be good news for me - I've been taking it since late 1977. Unfortunately, my first PSC symptoms occurred in 1999. Hmmmmm. I'm a bit skeptical, at least for my situation. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Barb Henshaw Contrary to the title of this story (this isn't a new drug, I've been taking it for well over 14 years, and know Arne is also taking it, not to mention others.) I wonder too if alcoholics would/could benefit from it (mainly because if they were health conscience enough to take it, they would probably quit drinking). Still...if it could help anyone, prolong time to transplant, or prevent the need altogether, that's a very good thing! Barb in Texas New drug may heal liver Clara Pirani, Medical reporter September 25, 2006 SCIENTISTS have discovered a drug that they predict could prevent liver disease, even in alcoholics. Tests on the drug, which is already used to treat inflammatory bowel disease, found that it prevented scarring of the liver and even reversed liver damage. Day, a liver specialist from Newcastle University in Britain who led the research, said sulphasalazine could provide an alternative to liver transplants.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 That would be good news for me - I've been taking it since late 1977. Unfortunately, my first PSC symptoms occurred in 1999. Hmmmmm. I'm a bit skeptical, at least for my situation. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Barb Henshaw Contrary to the title of this story (this isn't a new drug, I've been taking it for well over 14 years, and know Arne is also taking it, not to mention others.) I wonder too if alcoholics would/could benefit from it (mainly because if they were health conscience enough to take it, they would probably quit drinking). Still...if it could help anyone, prolong time to transplant, or prevent the need altogether, that's a very good thing! Barb in Texas New drug may heal liver Clara Pirani, Medical reporter September 25, 2006 SCIENTISTS have discovered a drug that they predict could prevent liver disease, even in alcoholics. Tests on the drug, which is already used to treat inflammatory bowel disease, found that it prevented scarring of the liver and even reversed liver damage. Day, a liver specialist from Newcastle University in Britain who led the research, said sulphasalazine could provide an alternative to liver transplants.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Hi Barb, Arne and Martha; I was also somewhat skeptical about this until I read the following recent article: _______________________ http://www.springerlink.com/content/mw785237424m537v/fulltext.pdf J Gastroenterol 2006; 41: 388–392 Letters to the editor Therapeutic benefit of sulfasalazine for patients with primary sclerosing cholangitis To the Editor: No satisfactory treatment has been established for patients with primary sclerosing cholangitis (PSC), other than liver transplantation.1,2 Here we describe patients with PSC associated with ulcerative colitis (UC) having biochemical and/or histological improvement of their liver disease following administration of sulfasalazine (SASP). There was a case report describing that the combination therapy with SASP and ursodeoxycholic acid (UDCA) was useful for three PSC children.3 However, some of our adult cases were improved with treatment with SASP alone. This is the first report describing the possible therapeutic benefit of SASP alone for adult PSC patients. A patient (male, 18 years old) was first admitted to our hospital in May 2000 for further evaluation of his previously detected chronic liver disease. Elevation of serum alanine aminotransferase (ALT; 385IU/l) and serum biliary enzyme levels, such as alkaline phosphatase (ALP; 578IU/l) and gamma-glutamyl transpeptidase (386IU/l), was found. Endoscopic retrograde cholangiopancreatography (ERCP) and liver biopsy revealed multifocal strictures of the intra- and extrahepatic bile ducts, and an onion skin-like appearance formed by fibrous obliteration of small bile ducts, with inflammation of the portal area. He also suffered from lower abdominal pain, chronic diarrhea, and bloody stool, and colonoscopic examination showed chronic inflammation of the entire colon. Based on these results, he was diagnosed as having PSC associated with UC. He was treated daily with 3g SASP alone. Two months after beginning treatment, the bloody stool disappeared, and the diarrhea improved after increasing the dose of SASP to 4.5 g/day. In addition to improvement of the clinical signs of UC, his ALT and hepatobiliary enzyme levels normalized within 2 months of the start of SASP. He became asymptomatic even after tapering the dose of SASP to 2g/day. Two years after beginning SASP, liver biopsy and colonoscopy were performed, and remission of UC and disappearance of the onion skin- like lesion and inflammation of the portal area (Fig. 1) were observed. We have treated 33 patients with PSC [mean age, 37 years; 19 (57.6%) were inflammatory bowel disease (IBD) associated, and 10 of the 19 patients with IBD were treated with SASP]. Hepatobiliary enzymes were normalized in 6 of 10 PSC cases (60%) by treatment with SASP alone (4/5) or SASP + UDCA (2/3), and even ERCP findings were significantly improved in 2 cases. Our retrospective investigation suggests that SASP is more effective to normalize hepatobiliary enzymes compared with other treatments. Interestingly, SASP was much more effective than oral 5-aminosalicylates (mesalazine, 5-ASA), which was used for IBD patients with PSC (Table 1). The mechanism of therapeutic action of SASP for PSC is not clear. One hypothesis is that SASP improves inflammation of the colonic mucosa, which then results in a decrease in translocation of bacteria and toxins into the portal tract. This hypothesis, however, is inconsistent with our observation because oral 5-ASA was ineffective. The majority of SASP passes directly into the colon and is digested by bacterial enzymes into sulfapyridine and 5- ASA.4 5-ASA is antiinflammatory5,6 and is the primary therapeutic compound in SASP, whereas sulfapyridine has been said to be of no value for treatment of bowel inflammation. However, sulfapyridine is effective for rheumatoid arthritis and possesses antibacterial activity, and the action of this component might be an alternative explanation of the observed efficacy. A large randomized and controlled study is warranted to clarify the efficacy of SASP in patients with PSC. Shinichiro Tada, Hirotoshi Ebinuma, Hidetsugu Saito, Toshifumi Hibi Department of Internal Medicine, School of Medicine, Keio University 35 Shinanomachi, Shinjuku-ku, Tokyo, 160-8582, Japan References 1. Chen W, Gluud C. Bile acids for primary sclerosing cholangitis. Cochrane Database Syst Rev 2003; CD003626. 2. Chen W, Gluud C. Glucocorticosteroids for primary sclerosing cholangitis. Cochrane Database Syst Rev 2004; CD004036. 3. Kozaiwa K, Tajiri H, Sawada A, Tada K, Etani Y, Miki K, Okada S. Three paediatric cases of primary sclerosing cholangitis treated with ursodeoxycholic acid and sulphasalazine. J Gastroenterol Hepatol 1998; 13:825–9. 4. Peppercorn MA, Goldman P. The role of intestinal bacteria in the metabolism of salicylazosulfapyridine. J Pharmacol Exp Ther 1972; 181:555. 5. s C, Lipman M, Fabry S, Moscovitch-Lopatin M, Almawi W, Keresztes S, et al. 5-Aminosalicylic acid abrogates T-cell proliferation by blocking interleukin-2 production in peripheral blood mononuclear cells. J Pharmacol Exp Ther 1995;272:399–406. 6. Ahnfelt-Ronne I, Nielsen OH, Christensen A, Langholz E, Binder V, Riis P. Clinical evidence supporting the radical scavenger mechanism of 5-aminosalicylic acid. Gastroenterology 1990;98:1162–9. Received: October 27, 2005 / Accepted: December 28, 2005 Reprint requests to: H. Saito DOI 10.1007/s00-x (Please see the full text .pdf file for Table 1 and Fig. 1) _______________________ I agree .... it's not exactly a new drug! What suprises me the most is that with all of the patients with PSC/IBD treated with sulfasalazine (sulphasalazine) how come this has not been noticed until now? Best regards, Dave (father of (21); PSC 07/03; UC 08/03) > I'm a bit skeptical, at least for my situation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2006 Report Share Posted September 25, 2006 Hi Barb, Arne and Martha; I was also somewhat skeptical about this until I read the following recent article: _______________________ http://www.springerlink.com/content/mw785237424m537v/fulltext.pdf J Gastroenterol 2006; 41: 388–392 Letters to the editor Therapeutic benefit of sulfasalazine for patients with primary sclerosing cholangitis To the Editor: No satisfactory treatment has been established for patients with primary sclerosing cholangitis (PSC), other than liver transplantation.1,2 Here we describe patients with PSC associated with ulcerative colitis (UC) having biochemical and/or histological improvement of their liver disease following administration of sulfasalazine (SASP). There was a case report describing that the combination therapy with SASP and ursodeoxycholic acid (UDCA) was useful for three PSC children.3 However, some of our adult cases were improved with treatment with SASP alone. This is the first report describing the possible therapeutic benefit of SASP alone for adult PSC patients. A patient (male, 18 years old) was first admitted to our hospital in May 2000 for further evaluation of his previously detected chronic liver disease. Elevation of serum alanine aminotransferase (ALT; 385IU/l) and serum biliary enzyme levels, such as alkaline phosphatase (ALP; 578IU/l) and gamma-glutamyl transpeptidase (386IU/l), was found. Endoscopic retrograde cholangiopancreatography (ERCP) and liver biopsy revealed multifocal strictures of the intra- and extrahepatic bile ducts, and an onion skin-like appearance formed by fibrous obliteration of small bile ducts, with inflammation of the portal area. He also suffered from lower abdominal pain, chronic diarrhea, and bloody stool, and colonoscopic examination showed chronic inflammation of the entire colon. Based on these results, he was diagnosed as having PSC associated with UC. He was treated daily with 3g SASP alone. Two months after beginning treatment, the bloody stool disappeared, and the diarrhea improved after increasing the dose of SASP to 4.5 g/day. In addition to improvement of the clinical signs of UC, his ALT and hepatobiliary enzyme levels normalized within 2 months of the start of SASP. He became asymptomatic even after tapering the dose of SASP to 2g/day. Two years after beginning SASP, liver biopsy and colonoscopy were performed, and remission of UC and disappearance of the onion skin- like lesion and inflammation of the portal area (Fig. 1) were observed. We have treated 33 patients with PSC [mean age, 37 years; 19 (57.6%) were inflammatory bowel disease (IBD) associated, and 10 of the 19 patients with IBD were treated with SASP]. Hepatobiliary enzymes were normalized in 6 of 10 PSC cases (60%) by treatment with SASP alone (4/5) or SASP + UDCA (2/3), and even ERCP findings were significantly improved in 2 cases. Our retrospective investigation suggests that SASP is more effective to normalize hepatobiliary enzymes compared with other treatments. Interestingly, SASP was much more effective than oral 5-aminosalicylates (mesalazine, 5-ASA), which was used for IBD patients with PSC (Table 1). The mechanism of therapeutic action of SASP for PSC is not clear. One hypothesis is that SASP improves inflammation of the colonic mucosa, which then results in a decrease in translocation of bacteria and toxins into the portal tract. This hypothesis, however, is inconsistent with our observation because oral 5-ASA was ineffective. The majority of SASP passes directly into the colon and is digested by bacterial enzymes into sulfapyridine and 5- ASA.4 5-ASA is antiinflammatory5,6 and is the primary therapeutic compound in SASP, whereas sulfapyridine has been said to be of no value for treatment of bowel inflammation. However, sulfapyridine is effective for rheumatoid arthritis and possesses antibacterial activity, and the action of this component might be an alternative explanation of the observed efficacy. A large randomized and controlled study is warranted to clarify the efficacy of SASP in patients with PSC. Shinichiro Tada, Hirotoshi Ebinuma, Hidetsugu Saito, Toshifumi Hibi Department of Internal Medicine, School of Medicine, Keio University 35 Shinanomachi, Shinjuku-ku, Tokyo, 160-8582, Japan References 1. Chen W, Gluud C. Bile acids for primary sclerosing cholangitis. Cochrane Database Syst Rev 2003; CD003626. 2. Chen W, Gluud C. Glucocorticosteroids for primary sclerosing cholangitis. Cochrane Database Syst Rev 2004; CD004036. 3. Kozaiwa K, Tajiri H, Sawada A, Tada K, Etani Y, Miki K, Okada S. Three paediatric cases of primary sclerosing cholangitis treated with ursodeoxycholic acid and sulphasalazine. J Gastroenterol Hepatol 1998; 13:825–9. 4. Peppercorn MA, Goldman P. The role of intestinal bacteria in the metabolism of salicylazosulfapyridine. J Pharmacol Exp Ther 1972; 181:555. 5. s C, Lipman M, Fabry S, Moscovitch-Lopatin M, Almawi W, Keresztes S, et al. 5-Aminosalicylic acid abrogates T-cell proliferation by blocking interleukin-2 production in peripheral blood mononuclear cells. J Pharmacol Exp Ther 1995;272:399–406. 6. Ahnfelt-Ronne I, Nielsen OH, Christensen A, Langholz E, Binder V, Riis P. Clinical evidence supporting the radical scavenger mechanism of 5-aminosalicylic acid. Gastroenterology 1990;98:1162–9. Received: October 27, 2005 / Accepted: December 28, 2005 Reprint requests to: H. Saito DOI 10.1007/s00-x (Please see the full text .pdf file for Table 1 and Fig. 1) _______________________ I agree .... it's not exactly a new drug! What suprises me the most is that with all of the patients with PSC/IBD treated with sulfasalazine (sulphasalazine) how come this has not been noticed until now? Best regards, Dave (father of (21); PSC 07/03; UC 08/03) > I'm a bit skeptical, at least for my situation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 -----Original Message----- What surprises me the most is that with all of the patients with PSC/IBD treated with sulfasalazine (sulphasalazine) how come this has not been noticed until now? I haven’t said anything until now, because I knew I would be labeled a heretic. But…..here goes…… It seems to me that over and over again someone, somewhere is trying for the umpteenth time to prove that Actigal/URSO/whatever is the drug for PSCer’s. They study it, restudy it, up the dose, lower the dose, too many people/not enough people, and still after all this time, every single doctor says – “it hasn’t been proven to prolong life, prolong time to transplant or improve symptoms”. Still they keep trying to prove it does by yet again another study. They have been studying it for years! Ok, it helps protect against colon cancer, we got that, but it isn’t working for PSC. They (researchers/doctors) need to move on as this study of sulfasalazine shows. Look for new or older drugs that might actually work/help and have been overlooked because every one is so darn focused on Actigal! Whew, thanks a bunch for letting me unload that, I’ve been holding it in for a long time. I know people love their URSO, I’m not against it, take it, a lot or a little, morning or night, with or without food, love it, live it, but let’s keep looking for other meds at the same time! Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 I find this very interesting and wonder if it has anything to do with how well I did for so many years. I was prescribed Sulfasalazine in 1984 when I was first diagnosed with UC and PSC. I took that alone up until 2002 or 2003 when Urso was added. Maybe it was playing a role in keep things under control without anyone knowing it. Hmmm. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 I find this very interesting and wonder if it has anything to do with how well I did for so many years. I was prescribed Sulfasalazine in 1984 when I was first diagnosed with UC and PSC. I took that alone up until 2002 or 2003 when Urso was added. Maybe it was playing a role in keep things under control without anyone knowing it. Hmmm. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 I find this very interesting and wonder if it has anything to do with how well I did for so many years. I was prescribed Sulfasalazine in 1984 when I was first diagnosed with UC and PSC. I took that alone up until 2002 or 2003 when Urso was added. Maybe it was playing a role in keep things under control without anyone knowing it. Hmmm. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 What is the brand name for Sulfasalazine? MartiMO425@... wrote: I find this very interesting and wonder if it has anything to do with how well I did for so many years. I was prescribed Sulfasalazine in 1984 when I was first diagnosed with UC and PSC. I took that alone up until 2002 or 2003 when Urso was added. Maybe it was playing a role in keep things under control without anyone knowing it. Hmmm. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 2006 Report Share Posted September 26, 2006 What is the brand name for Sulfasalazine? MartiMO425@... wrote: I find this very interesting and wonder if it has anything to do with how well I did for so many years. I was prescribed Sulfasalazine in 1984 when I was first diagnosed with UC and PSC. I took that alone up until 2002 or 2003 when Urso was added. Maybe it was playing a role in keep things under control without anyone knowing it. Hmmm. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 I haven't posted in a long time, but I do keep up with all the posts. A year ago Aug. my transplant dr. at UW Madison, WI was all set to get me back on the list for a re-transplant after all my hospital visits. In the mean time they put me on sulfamethoxazole/TMP DS T, and adjusted all my other meds. When I went back 2 months later they couldn't believe how I had come around. I'm now back to my yearly checks and we are not talking about a re-transplant. This may not work for anyone else, but it has for me, and I hate to second guess my dr. Everyone is different. The only thing I suffer from now is the empty place in my heart since my husband died of colon cancer 2 yrs. ago. I keep thinking it should have me. Hope God knew what he was doing. Cy tx '99, psc return '01 Quote Link to comment Share on other sites More sharing options...
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