Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Nikki, I am almost completely blocked up in the bile ducts and I take 1200 mg of urso daily. I have felt better since I've been on it and it lessened my URQ twitches. I've had no problems and would have been having a lot of them by now without my bile being thinned out. Glad to meet you, but hate to see new members. Tim L UC/PSC for 25 yrs + Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2002 Report Share Posted July 5, 2002 Nikki - this stated contraindication almost certainly does not apply to us (PSC patients). Ursodiol/Actigall thins the bile, making bile passage through strictures easier. Check out the FAQs on http://www..com/faq.html ( " our " website). It explains the use of Ursodiol/Actigall in PSC. .... and, from http://www.gicare.com/pated/ursodiol.htm " Gastroenterologists have been using ursodiol for years to treat primary biliary cirrhosis and primary sclerosing cholangitis because the drug lowers the abnormally elevated blood liver enzymes. It is assumed that this, in turn, results in less liver damage. Since the drug has a very good safety profile, physicians have been comfortable using it long-term. Data is coming into the medical literature that, indeed, there is significant benefit. People with these liver problems do seem to live longer and do not come to a liver transplant as soon as those who do not use it. Dissolving gallstones is almost never done anymore because laparoscopic gallbladder removal has become so easy. Dissolving gallstones takes a long time and, in many people, they may return when the drug is stopped. Still, for some who just don't want surgery or where surgery is considered too dangerous, it can be used. " The best available information is that Ursodiol/Actigall improves LFTs, MAY increase time to transplant and probably reduces incidence of colon cancer. It is about the only medication used to treat PSC, not just the symptoms. I've been taking it for about 2 years now, and high dosage for about a year. Any other questions? That's what we're here for - someone will have the answer. Welcome, and take care. Arne 51 - UC 1977 - PSC 2000 Alive and (mostly) well in Minnesota -----Original Message----- From: carnation28904 Hi everyone, my name is Nikki. I was diagnosed with PSC in December of last year however, the disease had been going on a few years before that, just didn't know it. Anyway, the question that I have is, if you read in any drug book, pharmacy pamphlets, etc. it states that there is a contradiction with people who have bile duct obstructions (which several of us do, I'm quite sure)and taking Urso. The doctors have prescribed that med for me but to be honest it scares me to take it, knowing that this contraindication is there. Have any of you had any problems from this specific medication? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2002 Report Share Posted July 6, 2002 Arne: Thanks for the info. on Urso, it makes me feel some better about the medication. How long have you had PSC? I was diagnosed in December 2001 and that is when I got my first stent put in. They went back in February (my doc will usually only leave them in for two months) and I had spontaneously passed it. I got my second one on June 14th of this year and this time, I had to stay overnight in the hospital. I have been having a few problems since then and I'm waiting to see what they are going to do (another regular stent, an inter-outer stent, etc. I'm 32 and have a son that will be 12 and a daughter that will be 2 years old next month so I have to hang in there and not give up. I was placed on the transplant list in May of this year, guess it's better to be on it than not on it! Hope you are doing well, take care and write anytime. Nikki --- A & J Myrabo wrote: > Nikki - this stated contraindication almost > certainly does not apply to us > (PSC patients). Ursodiol/Actigall thins the bile, > making bile passage > through strictures easier. Check out the FAQs on > http://www..com/faq.html ( " our " website). > It explains the use of > Ursodiol/Actigall in PSC. > > ... and, from > http://www.gicare.com/pated/ursodiol.htm > > " Gastroenterologists have been using ursodiol for > years to treat primary > biliary cirrhosis and primary sclerosing cholangitis > because the drug lowers > the abnormally elevated blood liver enzymes. It is > assumed that this, in > turn, results in less liver damage. Since the drug > has a very good safety > profile, physicians have been comfortable using it > long-term. Data is coming > into the medical literature that, indeed, there is > significant benefit. > People with these liver problems do seem to live > longer and do not come to a > liver transplant as soon as those who do not use it. > Dissolving gallstones > is almost never done anymore because laparoscopic > gallbladder removal has > become so easy. Dissolving gallstones takes a long > time and, in many people, > they may return when the drug is stopped. Still, for > some who just don't > want surgery or where surgery is considered too > dangerous, it can be used. " > > > The best available information is that > Ursodiol/Actigall improves LFTs, MAY > increase time to transplant and probably reduces > incidence of colon cancer. > It is about the only medication used to treat PSC, > not just the symptoms. > > I've been taking it for about 2 years now, and high > dosage for about a year. > > Any other questions? That's what we're here for - > someone will have the > answer. Welcome, and take care. > > > Arne > 51 - UC 1977 - PSC 2000 > Alive and (mostly) well in Minnesota > > -----Original Message----- > From: carnation28904 > > > Hi everyone, my name is Nikki. I was diagnosed with > PSC in December > of last year however, the disease had been going on > a few years > before that, just didn't know it. Anyway, the > question that I have > is, if you read in any drug book, pharmacy > pamphlets, etc. it states > that there is a contradiction with people who have > bile duct > obstructions (which several of us do, I'm quite > sure)and taking > Urso. The doctors have prescribed that med for me > but to be honest > it scares me to take it, knowing that this > contraindication is there. > Have any of you had any problems from this specific > medication? > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 .... How long have you had PSC? Nikki Since March, 2001. I had my first ERCP then, but they were unable to dilate my common bile duct (CBD) at that hospital. I was symptom free for about a year before my next cholangitis attack. I was sent to Mayo that time, where they dilated my CBD and installed a stent. The stent apparently blocked my gall bladder duct, so it was removed 2 weeks later. There definitely was a problem with the gall bladder (enlarged), so that got removed a couple months later (one day surgery). I've been symptom free for about a year now. The ERCPs showed mostly CBD strictures - not much involvement with the intrahepatic ducts (yet). I've even done some traveling, but it's a little scary. In another 6 weeks I'm going to spend 8 days in the Boundary Waters; 4 days from " extraction " at the farthest point. I do have a lot of hope - there's a tremendous amount of research going on and promising developments. I just need to hang on for the next development. Arne 51 - UC 1977 - PSC 2000 Alive and (mostly) well in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2002 Report Share Posted July 7, 2002 Nikki.. Welcome to the group....and you will see after reading here a very short time that most all PSCers are on Urso....it helps to thin the bile which is helpful with psc.... hope to see more from you and learn more about you.. take care and talk soon Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
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