Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Dear Ricky & Don; Welcome! Sorry your diagnosis brings you here, but glad that you found the group. I am not a PSCer myself, but rather my son, , is. He was diagnosed with PSC and UC last summer. He is currently on medium-dose ursodiol and asacol and is symptom-free and enjoying his first year at College. To try to answer some of your questions, I believe the group was started on Dec 11, 1998, and currently has 666 members. Some of the major PSC research groups nationwide and worldwide are as follows (I apologize if I have missed any significant ones!): Dr. K.D. Lindor, Dr. W.R. Kim, and Dr. P. Angulo: Division of Gastroenterology and Hepatology, Mayo Clinic and Foundation, Rochester, Minnesota, USA. Dr. R.H. Wiesner: Liver Transplant Center, Mayo Clinic, 200 First Street SW, Rochester, MN 55905, USA. Dr. J. Neuberger: Liver Unit, Queen Hospital, Birmingham, United Kingdom. Dr. M.M. Kaplan: Department of Medicine Tufts-New England Medical Center and Tupper Research Institute, Boston, MA 02111, USA. Dr. R. Poupon: Service d'Hepatologie, Hopital Saint-Antoine, Assistance Publique-Hopitaux de Paris, 75571 cedex 12, Paris, France. Dr. R.W. Chapman: Department of Hepatology and Gastroenterology, Oxford Radcliffe Hospital, Oxford OX3 9DU, UK. Dr. U. Broome: Department of Gastroenterology and Hepatology, Karolinska Institute, Huddinge University Hospital, Sweden. Dr. E. Schrumpf and Dr. K.M. Boberg: Medical Department, Rikshospitalet, Oslo, 0027, Norway. Dr. G.A. Kullak-Ublick and Dr. G. Paumgartner: Department of Internal Medicine II, Klinikum Grosshadern, University of Munich, Germany. Dr. U. Leuschner: Medical Clinic II, Johann Wolfgang Goethe Universitat, furt am Main, Germany. You can find abstracts of many of their research papers at the following web site: http://home.insightbb.com/~rhodesdavid/ There are a couple of links posted there (on the www Resources page) on " Diet and Liver Disease " and " Diet & Your Liver " . You might also try the following booklet (if you have Adobe Acrobat Reader) available from the Falk Foundation: Information for Patients with Liver Diseases including Guidelines for Nutrition, Author: S.-D. Müller, (80 pages) http://www.falkfoundation.com/pdf/F80e.pdf Sorry I can't answer your question about " After your stents were taken out, how long a period have you had without cholangitis attacks, strictures, or other problems? " ... I will leave that in the capable hands of other members of the group who have personal experience with this. 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 April 6, 2004 Report Share Posted April 6, 2004 Ricky, Welcome but as we all say sorry you have to be here. It is great you have found such a wonderful hep to help you through all this. Having such a relationship is pure gold and will serve you well. Let me take a stab at some of your questions. > 1. I know that there is no time line for disease progression, but I would love to hear about some of your personal experiences. After your stents were taken out, how long a period have you had without cholangitis attacks, strictures, or other problems? Am I lucky to have had seven asymptomatic months or could this last for a long time? A: I followed a sinilar course after initial diagnosis with frequent ERCP procedures with stent replacements. After my first round of ERCP procedures I went about 10 months without intervention. I am now in the middle of my second " quiet " period and am ERCP now for about 6 months. I know specifically, that Arne, another member has been stent free for 2+ years. I am sure some go even longer. Really depends I think on the agressiveness of your doctor and the progression of your disease. > > 2. How long has this support group been in existence, and how many members do you have? A: Founded in 1998 and there are 600 registered members. Not all are active and many of us come and go depending on what else is going on in our life. (I am sure Maureen could attest to that one!) > > 3. Where are some of the main centers nationwide and worldwide where research is being done on PSC? A: There are many centers throughout the country but most research seems to originate from the Mayo clinic with other centers participating as well. PSC is a rare disease with not much media sizzle, Hep. C gets most of the attention. Most studies focus on the use of URSO in treatment and one major multi-center study with high dose Urso is currently underway. Several of us (including myself) are enrolled in this study. Other studies tend to focus on autoimmune issues. Lots of research goes on in general regarding liver disease that can apply to many different diseases and treatments. > > 4. Do you have any dietary suggestions? I have been working with a nutritionist to balance my diet, mainly to cut down my fat intake, which helps a lot. It has also helped to eat three smaller meals and add a morning and afternoon healthy snack. Diet has not been much of a factor for me since my Ulcerative Colitis is under good control. So perhaps others can answer that one. > Let us know where you are from and we can give you better info about centers and doctors in your area. Hope you have a good long stretch without needing stents. in Seattle UC 1991, PSC 2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2004 Report Share Posted April 6, 2004 Hello Jackie; Welcome to the group. I am so sorry to hear about your son's PSC diagnosis, but it sounds like you have made great progress in getting this under control. With regard to your question .. " whether you noticed any sorts of symptoms / trends earlier in your child's life " .... I should first point out that our son is an only child, so we have no siblings to compare him with. However, he did have a very bad reaction to a DPT vaccination at a few months of age. He got very sick afterwards with colitis, and what was presumed to be menengitis. Eventually he came back to health after treatment with antibiotics. We look back now and wonder ... did the DPT shot compromise his immune system? .... I guess we will never know? Neither my wife Judy, nor I, have PSC or IBD, and there seems to be no immediate history of these diseases in our families. Hope this answers your question? 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 April 7, 2004 Report Share Posted April 7, 2004 Thanks to the members who answered my questions. I appreciate all your input and knowledge. , I will check out those links that you suggested. Ricky PSC/4-04 Quote Link to comment Share on other sites More sharing options...
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