Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 Dear Group, I know that Dr. Gene Whitington is one of the doctors involved with research for PSC. I believe he diagnosed the disease in the 's son which led to the establishment of the foundation. I recently had a phone call from an old friend that is a pharmaceutical rep for Remicade. He knows of our son's PSC and told me Dr. Whitington is a strong believer in the postive results of remicade and PSC. I missed this year's PSC conference because we were moving from NY to TX, but hope to make it to ville. Can anyone give me the bottom line on the research findings of this drug for PSC? I am not a frequent poster, but keep up daily with the group. A friend asked me why I torture myself reading the post everyday. I told her I think deep down I'm going to open up a message one day and there will be a huge breakthrough in getting closer to a cure. I'm a very impatient person, especially when it comes to my children and their well being. Thanks, Terry ( 's mom, diagnosed 3/2000 age 25 ).See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2007 Report Share Posted June 27, 2007 We see Dr. Whittington out of Chldrens Memorial in Chicago and I believe Gene and are brothers. My son, Tyler is 9 and has Ulcerative colitis and PSC. We could not get the colitis under control, so they did suggest Remicaid infusions. We were hesitant because it is known to cause a type of cancer but the cancer normally occurs with those with Chrons and PSC not UC and PSC. It can also cause TB, I believe and it is made from mouse antibodies not human. Dr. Whittington said that despite the bad possibilities, it is a great drug to treat both of Tylers diseases and he and Dr. Brown (GI doctor) were insisting on it. However, miraculously after his most recent colonoscopy, the colitis is healing as a result of several drugs he is on (Prednisone, 6MP, Alo purinol and Azacol), he is also on Urso for the PSC. So, he did ot have to have the infusions after all. Both Dr, Brown and Dr. whittington are involved in a study to ascertain the correlation between PSC and UC. They have been outstanding and voluntarily call to see how Tyler is doing. I am very impressed with the explanations and time they spend with Tyler. And that is our story... Ostos jterry05@... jterry05@... Sent by: 06/27/2007 12:20 PM Please respond to To cc Subject Dr. Whitington Dear Group, I know that Dr. Gene Whitington is one of the doctors involved with research for PSC. I believe he diagnosed the disease in the 's son which led to the establishment of the foundation. I recently had a phone call from an old friend that is a pharmaceutical rep for Remicade. He knows of our son's PSC and told me Dr. Whitington is a strong believer in the postive results of remicade and PSC. I missed this year's PSC conference because we were moving from NY to TX, but hope to make it to ville. Can anyone give me the bottom line on the research findings of this drug for PSC? I am not a frequent poster, but keep up daily with the group. A friend asked me why I torture myself reading the post everyday. I told her I think deep down I'm going to open up a message one day and there will be a huge breakthrough in getting closer to a cure. I'm a very impatient person, especially when it comes to my children and their well being. Thanks, Terry ( 's mom, diagnosed 3/2000 age 25 ). See what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 Hi ; According to this recent paper, the efficacy of infliximab (remicade) in PSC is " unknown " : ___________________ Curr Treat Options Gastroenterol. 2007 Jun;10(3):178-84. Efficacy of infliximab for extraintestinal manifestations of inflammatory bowel disease. Siemanowski B, Regueiro M Regueiro, MD Division of Gastroenterology, Hepatology, and Nutrition, University of Pittsburgh Medical Center, 200 Lothrop Street, PUH-C Wing Mezzanine Level, Pittsburgh, PA 15213, USA. mdr7@.... Crohn's disease (CD) and ulcerative colitis (UC), collectively referred to as inflammatory bowel disease (IBD), are associated with extraintestinal manifestations (EIMs) in approximately 40% of patients. Infliximab, a chimeric monoclonal antibody to tumor necrosis factor-alpha, is effective for induction and maintenance of remission of CD and UC. The role of infliximab for EIMs related to IBD has been less studied, but it is likely as effective. The EIMs may run a course that parallels IBD activity or may present separately. The EIMs that parallel intestinal inflammation (eg, peripheral arthritis, pyoderma gangrenosum, erythema nodosum, and episcleritis) generally respond to infliximab. Therefore, treating patients with IBD who have one of these EIMs will more often than not improve the EIM. The EIMs that run a separate course from IBD are more difficult to treat. Ankylosing spondylitis (AS), uveitis, and primary sclerosing cholangitis (PSC) have variable responses to IBD medications. Infliximab is efficacious for uveitis and is approved by the US Food and Drug Administration for treatment of AS. The efficacy of infliximab for PSC is unknown. The dosing schedule of infliximab for IBD patients with EIMs should be induction doses with 5 mg/kg at 0, 2, and 6 weeks followed by every 8 weeks. Whether long-term infliximab therapy is necessary to maintain remission of EIMs, as in the case of IBD, has not been established. PMID: 17547856. ________________ There was a report that another tumor necrosis factor-alpha inhibitor, etanercept (enbrel), was ineffective in PSC in a small pilot trial: ________________ Dig Dis Sci. 2004 Jan;49(1):1-4. A pilot study of etanercept in the treatment of primary sclerosing cholangitis. Epstein MP, Kaplan MM. Division of Gastroenterology, Tufts New England Medical Center, Boston, Massachusetts 02111, USA. There is no effective medical treatment for primary sclerosing cholangitis (PSC), a chronic cholestatic liver disease that usually progresses to cirrhosis and liver failure. The aim of this study was to determine the safety and efficacy of etanercept, an inhibitor of tumor necrosis factor, in the treatment of PSC. Ten patients with clinically active PSC were studied. All had elevated serum alkaline phosphatase levels, cholangiograms that were diagnostic of PSC, and liver histology consistent with PSC. Five patients had elevated serum bilirubin levels, five had pruritus, eight had failed to respond to ursodiol and/or methotrexate, and six had rapidly recurring dominant bile duct strictures. Patients were to receive etanercept, 25 mg subcutaneously twice weekly, for 6 months if there were no side effects and for 1 year if there was evidence of efficacy after 6 months. Biochemical tests of liver function did not improve in any patient. Mean serum bilirubin levels increased significantly, from 2.0 to 3.6 mg/dl (P = 0.026). Two of the five patients with pruritus had resolution of pruritus during treatment with etanercept, recurrence when etanercept was stopped, and resolution when it was restarted, although there was little change in liver enzymes or bilirubin levels. There was no decrease in the rate of stricture formation and there were no side effects. Etanercept, at the dosage used, was well tolerated but not effective in the treatment of PSC. It may be helpful in treating pruritus due to cholestasis. PMID: 14992426. ________________ But it is now known that etanercept is NOT very effective in IBD: ________________ Curr Treat Options Gastroenterol. 2007 Jun;10(3):195-207. Current and Future Anti-TNF Therapy for Inflammatory Bowel Disease. Osterman MT, Lichtenstein GR R. Lichtenstein, MD Hospital of the University of Pennsylvania, University of Pennsylvania School of Medicine, Division of Gastroenterology, 3rd Floor Ravdin Building, 3400 Spruce Street, Philadelphia, PA 19104-4283, USA. grl@.... Anti-tumor necrosis factor-alpha (anti-TNF) therapy has become a very important modality in the treatment of patients with inflammatory bowel disease. A number of anti-TNF medications have been investigated for this purpose, many via randomized controlled trials. Infliximab, the most studied of these agents, has shown impressive efficacy in the treatment of luminal and fistulizing Crohn's disease, as well as ulcerative colitis. Adalimumab and certolizumab have shown similar efficacy in Crohn's disease but have not yet been studied in ulcerative colitis. Less impressive results were seen in randomized controlled trials involving CDP-571, etanercept, or onercept for patients with Crohn's disease. Thalidomide and CNI-1493 have been evaluated only preliminarily in small, open-label pilot studies in patients with Crohn's disease. The future of anti-TNF therapy in inflammatory bowel disease is very bright, as exciting new developments continue to be made at a rapid pace. PMID: 17547858. ________________ So, would etanercept be expected to be useful for PSC? There definitely needs to be a controlled clinical trial of infliximab (remicade) in PSC. I heard from Gene Whittington last July that such a trial was planned as part of the STOPSC initiative: https://web.emmes.com/study/psc/index.html Best regards, Dave > Can anyone give me the bottom line on the research findings of this drug for PSC? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2007 Report Share Posted June 28, 2007 I work at the University of Florida in Gainesville and my son who was diagnosed with PSC and UC in June 2005 and later informed that there may be an overlap with AIH sees a doctor at Shands. Another doctor who is in the school of medicine and was formally from Mayo in MN was recruiting people for a study (which was a joint study with folks from Mayo) using infliximab (remicade) about a year ago. I had a chat with her and got the forms which required that to get on the study, he had to stop taking one of his current medications (ursadiol or asacol, can't remember which). I discussed with my son's doctor and he told me that since my son is doing well on his current medication, he wouldn't change it and so I listened to his advice and we never got on the study. I don't know if that is a wrong decision but it is difficult to make decisions on these issues sometimes. Rita (Florida) Quote Link to comment Share on other sites More sharing options...
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