Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Dave and to all others who replied, Thank you for your thoughts. I can tell that I have found a valuable resource and support in this group. Suzanne is on asacol and ursodiol as well as purinethol. She was on sulfasalazine for awhile, but that gave her awful hives. They took her off of that and did not replace it with another 5-ASA, until the bledding returned, that is when they started her on the asacol. She has been on the purinethol from the beginning. She also was on prednisone for awhile (while on the sulfasalazine). They increased the sulfasalazine at the same time that they introduced the ursodiol and started slowly decreasing the predisone, so it took awhile to determine that the hives were from the sulfa and not the ursodiol. I think the prednisone was preventing the hives initially. She also was on an enema cortizone for two weeks prior to starting the asacol. The problem with the asacol is that it seems like she isn't digesting it well, there are whole pills in her stools every day, but since she takes nine pills a day I am assuming that something is getting put to use. I know (have read) that it can be a long process to get the UC under control. When we first got these diagnoses I was so focused on the PSC in terms of learning about it, that I didn't spend much time learning about the UC. It seemed to me that the PSC was much more threatening. I guess now I am just beginning to focus on the UC as well. I am confused about the medications though. Initially the Drs. told me that there was really no medication or treatment for the PSC, but when he put her on the ursodiol he said it was for the liver. Can someone clarify for me what the ursodiol is for? I am also a bit unclear as to what the 6-MP medications are for - I know they call it immunomodulator therapy, but I am unclear as to whether that is just for the UC, or if that will help with the PSC as well. Again, I thank you all for this group . . . and your understanding. LINDA Hello ; Welcome to the group. It is very sad to hear of another teen affected by this disease, and to know that another parent is going through this difficult time. If it is any consolation, my wife Judy and I also experienced the same emotions when our son was diagnosed. Everyone has their own coping mechanisms ... I have found it particularly helpful to read as much as I can. There's a huge amount of research being done on inflammatory bowel diseases and autoimmune diseases, and it is quite a challenge to keep up with it all. I wake up every morning and think ... " today I will find another few pieces of the PSC puzzle ... some of these pieces may come in handy in the future " . Try to keep your spirits up, and think positive, and be thankful for every day of wellness. I do hope that your daughter's UC can soon be brought under control. Is your daughter on medications, such as asacol and/or ursodiol? Our son has responded very well to these medications, and his recent colonscopy (1 year after initial diagnosis) has shown that his UC is now pretty quiescent. We are thinking about giving him " probiotics " based on what we have heard from other members of the support group, and from what we have read in the literature. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) PRIMARY SCLEROSING CHOLANGITIS LITERATURE http://home.insightbb.com/~rhodesdavid/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Hello ; According to MedlinePlus, 6-mercaptopurine (6-MP) [Purinethol] is used for several autoimmune disease, but PSC is not listed amongst these. " Mercaptopurine also is used to treat many types of autoimmune diseases such as systemic lupus erythematosus, rheumatoid arthritis, acute idiopathic polyneuritis, acute idiopathic nephrotic syndrome, psoriatic arthritis, erythroid aplasia, or myelofibrosis; idiopathic hemolytic anemia; macroglobulinemia; idiopathic thrombocytopenia purpura; idiopathic pulmonary hemosiderosis; multiple sclerosis; myasthenia gravis; uveitis; and ulcerative colitis. " It is widely used in UC and Crohn's as an " immunosuppressive " agent that does not have the same side-effects of steroids. It seems to be especially useful for those UC patients not responding to 5- aminosalicylic acid alone: ______________ Aliment Pharmacol Ther. 2002 Jul;16 Suppl 4:21-4. Review article: maintenance of remission in ulcerative colitis. Kamm MA. St Mark's Hospital, London, UK. kamm@... Seventy percent of patients with ulcerative colitis can expect to experience a relapse over a 12 month period. Sulfasalazine was the first drug demonstrated to reduce this relapse rate to 21 percent. Subsequent studies have demonstrated that 5-aminosalicylic acid (5- ASA) is the main active component, and preparations containing only 5- ASA have similar efficacy to sulfasalazine. 5-ASA is readily absorbed from the small intestine; to achieve high a colonic lumenal concentration therefore requires special release formulation. A variety of 5-ASA preparations is available, differing in their release mechanism, efficacy and side effect profile. Most patients can be maintained in remission using oral 5-ASA medication. For patients with distal or left sided disease the use of rectal 5-ASA is also of proven benefit in maintaining remission. Some patients with frequent or severe relapses require stronger immunosuppression, and in these patients azathioprine or 6-mercaptopurine (6-MP) are of proven benefit. Azathioprine is also invaluable for maintaining remission in patients who have been treated with cyclosporin for a fulminant acute episode of colitis. The exciting spectre of natural bacterial therapies (probiotics) deserves further exploration. PMID: 12047255 _____________________ Ursodiol does several things: it seems to protect liver cells againsts toxic bile acids, preventing cell death (apoptosis); and it increases bile transport processes, as reviewed in the following paper: Hepatology. 2002 Sep;36(3):525-31. Ursodeoxycholic acid in cholestatic liver disease: mechanisms of action and therapeutic use revisited. Paumgartner G, Beuers U. Department of Medicine II, Klinikum Grosshadern, University of Munich, Munich, Germany. Gustav.Paumgartner@... Ursodeoxycholic acid (UCDA) is increasingly used for the treatment of cholestatic liver diseases. Experimental evidence suggests three major mechanisms of action: (1) protection of cholangiocytes against cytotoxicity of hydrophobic bile acids, resulting from modulation of the composition of mixed phospholipid-rich micelles, reduction of bile acid cytotoxicity of bile and, possibly, decrease of the concentration of hydrophobic bile acids in the cholangiocytes; (2) stimulation of hepatobiliary secretion, putatively via Ca(2+)- and protein kinase C-alpha-dependent mechanisms and/or activation of p38 (MAPK) and extracellular signal-regulated kinases (Erk) resulting in insertion of transporter molecules (e.g., bile salt export pump, BSEP, and conjugate export pump, MRP2) into the canalicular membrane of the hepatocyte and, possibly, activation of inserted carriers; (3) protection of hepatocytes against bile acid-induced apoptosis, involving inhibition of mitochondrial membrane permeability transition (MMPT), and possibly, stimulation of a survival pathway. In primary biliary cirrhosis, UDCA (13-15 mg/kg/d) improves serum liver chemistries, may delay disease progression to severe fibrosis or cirrhosis, and may prolong transplant-free survival. In primary sclerosing cholangitis, UDCA (13-20 mg/kg/d) improves serum liver chemistries and surrogate markers of prognosis, but effects on disease progression must be further evaluated. Anticholestatic effects of UDCA have also been reported in intrahepatic cholestasis of pregnancy, liver disease of cystic fibrosis, progressive familial intrahepatic cholestasis, and chronic graft-versus-host disease. Future efforts will focus on definition of additional clinical uses of UDCA, on optimized dosage regimens, as well as on further elucidation of mechanisms of action of UDCA at the molecular level. Publication Types: Review Review Literature PMID: 12198643 _______________________ In addition, it seems to protect against colon cancer: Pardi DS, Loftus EV Jr, Kremers WK, Keach J, Lindor KD 2003 Ursodeoxycholic acid as a chemopreventive agent in patients with ulcerative colitis and primary sclerosing cholangitis. Gastroenterology 124: 889-893. and against hepatobiliary malignancies: Brandsaeter B, Isoniemi H, Broome U, Olausson M, Backman L, Hansen B, Schrumpf E, Oksanen A, zon BG, Hockerstedt K, Makisalo H, Kirkegaard P, Friman S, Bjoro K 2004 Liver transplantation for primary sclerosing cholangitis; predictors and consequences of hepatobiliary malignancy. J. Hepatol. 40: 815-822. Best regards, Dave (father of (19); PSC 07/03; UC 08/03) PRIMARY SCLEROSING CHOLANGITIS LITERATURE http://home.insightbb.com/~rhodesdavid/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 The problem with the asacol is that it seems like she isn't digesting it well, there are whole pills in her stools every day, but since she takes nine pills a day I am assuming that something is getting put to use. ***You could try PENTASA or COLAZAL. I tryed both because of the same issue with Asacol. Both of these meds are for UC. I beleive they are micro-granules. I never noted any capsules in my stool. Just my experience with them. Andi Quote Link to comment Share on other sites More sharing options...
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