Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 In general, Urso is well tolerated by most patients. There are some who cannot tolerate it. If I remember, Andi and Cheryl (ID) do not. It sounds like you need to see the Dr. sooner - it may seem hard to believe, but it CAN get worse. From http://www.drugs.com/MTM/ursodiol.html Other, less serious side effects may be more likely to occur. Continue to take ursodiol and talk to your doctor if you experience . nausea or upset stomach, . diarrhea, or . headache. Arne 54 - UC 9/77 - PSC 4/00 Alive and (mostly) well in Minnesota -----Original Message----- From: [mailto: ] On Behalf Of llduq@... , Geoff and others, I don't remember hearing that Urso can cause problems with UC. What kind of information is available on this or is it more antecdotal information? I looked at the PSC Literature and posted what I could find. None of these talk about Urso complicating UC. Anyway - any specific informatino would be helpful. Thanks for listening. LINDA (Mom of Suzanne, 16; UC 1/04, PSC 3/04) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Dear ; I am sorry to hear about Suzanne's continuing UC problems. Urosdiol can have some side-effects in some patients, including: Ursodiol ( Gastroenterology Patient Education) http://www.gicare.com/pated/ursodiol.htm Minor: - diarrhea - nausea - vomiting - gas - metallic taste - constipation - rash - headache - muscle aches Major: - severe itching - severe muscle or joint pain - persistent cough Actigall Datasheet (Medsafe) http://www.medsafe.govt.nz/Profs/Datasheet/a/Actigallcap.htm Adverse effects Gastrointestinal Actigall given in doses of 8-10 mg/kg/day rarely causes diarrhoea (<1%). One study in which a placebo control was not used was associated with a 6% incidence of mild, transient diarrhoea not requiring termination of therapy or lowering of Actigall dose. One patient with ulcerative colitis in the Actigall studies developed diarrhoea on therapy. Actigall [ursodiol] (MedlinePlus Drug Information (NLM/NIH)) http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699047.html What side effects can this medication cause? Side effects from ursodiol can occur. Tell your doctor if any of these symptoms are severe or do not go away: - diarrhea - constipation - upset stomach - indigestion - dizziness - vomiting - cough - sore throat - runny nose - back pain - muscle and joint pain - hair loss It might be good to talk with Suzanne's GI to determine if Suzanne's urgency is due to the taking of ursodiol or to a true UC flare. I'm not sure whether any tests can be done to prove that ursodiol is the cause, other than to stop the medication and see if the symptoms disappear? But only Suzanne's doctor could make that call. Best regards, Dave (father of (20); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Hi , I found the following article earlier tonight: Ursodiol for Hepatobiliary Disorders http://www.annals.org/cgi/content/full/121/3/207 It says: " Otherwise, ursodiol has been exceptionally well tolerated in patients with primary sclerosing cholangitis, with few gastrointestinal adverse effects even in those patients whose primary sclerosing cholangitis was associated with ulcerative colitis. " I guess I'm one of the few that had adverse gastrointestinal effects. I tried twice within two weeks and each time I developed symptoms of cramps, bleeding, and diaheria within a day or two but both times stopped before the symptoms got worse. I'm pretty sure it was related to Ursodiol because each time I stopped taking it the symptoms went away. My doctor and pharmasist both warned that it was tough on the stomach. I also wasn't on any medication for colitis at the time which may have made a difference. Anyways good luck and if you find out any more info I'd be interested to know. Geoff >From: llduq@... >Reply-To: >To: >Subject: Ursodil & UC >Date: Thu, 09 Jun 2005 02:12:13 +0000 > >, Geoff and others, >I don't remember hearing that Urso can cause problems with UC. What kind of >information is available on this or is it more antecdotal information? I >looked at the PSC Literature and posted what I could find. None of these >talk about Urso complicating UC. > >This has my attention because Suzanne is in her fifth week of a flare up >with UC. Actually the flare up has lasted longer, she has been on cort >enema for four - going into her fifth week. We are seeing a doctor in two >weeks. If there is any specific literature on UC and Urso I would like to >be able to share it with the doctor. > >I am becoming very frustrated and dismayed with all of this. Her liver >enzymes have been maintained in the normal range, but the UC is getting >worse. She is going to the bathroom on an average of 8 times a day (bowel >movements) and each one is with such urgency that she has not always made >it. I want to help her and cannot. Also, I just found out that she took my >husband's business car (a jeep with his business name plastered all over >it) for a joy ride with some of her teen friends. I want to help her and >strangle her ... I want her to have a normal teen age life, but I don't >want her to get in trouble. I " m not asking too much am I? > >Anyway - any specific informatino would be helpful. Thanks for listening. >LINDA >(Mom of Suzanne, 16; UC 1/04, PSC 3/04) > >Cancer prevention in inflammatory bowel disease and the chemoprophylactic >potential of 5-aminosalicylic acid. >Bernstein CN, Eaden J, Steinhart AH, Munkholm P, Gordon PH. > > " Recent data have suggested some potential preventative benefit of using >ursodeoxycholic acid in patients with ulcerative colitis and primary >sclerosing cholangitis. " >- >Ursodeoxycholic acid as a chemopreventive agent in patients with ulcerative >colitis and primary sclerosing cholangitis. >Pardi DS, Loftus EV Jr, Kremers WK, Keach J, Lindor KD. > > " In addition, a recent report suggests that it also may decrease the risk >for developing colorectal dysplasia in patients with ulcerative colitis >(UC) and primary sclerosing cholangitis (PSC). " >- >Intestinal absorption of ursodeoxycholic acid in children and adolescents >with inflammatory bowel disease. >Fujisawa T, Kimura A, Ushijima K, Nakashima E, Inoue T, Yamashita Y, Kato >H. > > " Malabsorption of ursodeoxycholic acid was not observed in any patients >with ulcerative colitis. " > >----------------------------------------------------- >Geoff,My daughter(18) can't take Urso,because it causes more uc >problems for her. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2005 Report Share Posted June 8, 2005 Geoff, , Arne & others, Thank you for these quick replies. After reading what Geoff wrote (below), and finding similar comments in the literature that suggest no adverse effects, I am inclined to think that Urso is not impacting her UC negatively. She has been on it for over a year - I can't say that there was any correlation between starting Urso and a flare up. I am, however, still going to mention it to the Dr. I will definitely (and always will) share any new information that I may get from the Dr. That's the power of the group, sharing information. We are meeting with the Dr. in two weeks because she is going to be out of town. Suzanne's Dr. is at Children's of Pgh, and I have always felt comfortable calling the office anytime, someone is always on call. So, if her symptoms to increase significantly I will not hesitate to call and see someone else. On another note - one of the things that Dr. Harpavat wants to talk about is this group and writing the article about her work with bone density. I think it's great because it gives me a chance to strengthen my relationship with her. LINDA (Mom of Suzanne, 16; UC 1/04, PSC 3/04) ------------------------------------------------------ I tried twice within two weeks and each time I developed symptoms of cramps, bleeding, and diaheria within a day or two but both times stopped before the symptoms got worse. Anyways good luck and if you find out any more info I'd be interested to know. Geoff Hi , I found the following article earlier tonight: Ursodiol for Hepatobiliary Disorders http://www.annals.org/cgi/content/full/121/3/207 It says: " Otherwise, ursodiol has been exceptionally well tolerated in patients with primary sclerosing cholangitis, with few gastrointestinal adverse effects even in those patients whose primary sclerosing cholangitis was associated with ulcerative colitis. " I guess I'm one of the few that had adverse gastrointestinal effects. I tried twice within two weeks and each time I developed symptoms of cramps, bleeding, and diaheria within a day or two but both times stopped before the symptoms got worse. I'm pretty sure it was related to Ursodiol because each time I stopped taking it the symptoms went away. My doctor and pharmasist both warned that it was tough on the stomach. I also wasn't on any medication for colitis at the time which may have made a difference. Anyways good luck and if you find out any more info I'd be interested to know. Geoff >From: llduq@... >Reply-To: >To: >Subject: Ursodil & UC >Date: Thu, 09 Jun 2005 02:12:13 +0000 > >, Geoff and others, >I don't remember hearing that Urso can cause problems with UC. What kind of >information is available on this or is it more antecdotal information? I >looked at the PSC Literature and posted what I could find. None of these >talk about Urso complicating UC. > >This has my attention because Suzanne is in her fifth week of a flare up >with UC. Actually the flare up has lasted longer, she has been on cort >enema for four - going into her fifth week. We are seeing a doctor in two >weeks. If there is any specific literature on UC and Urso I would like to >be able to share it with the doctor. > >I am becoming very frustrated and dismayed with all of this. Her liver >enzymes have been maintained in the normal range, but the UC is getting >worse. She is going to the bathroom on an average of 8 times a day (bowel >movements) and each one is with such urgency that she has not always made >it. I want to help her and cannot. Also, I just found out that she took my >husband's business car (a jeep with his business name plastered all over >it) for a joy ride with some of her teen friends. I want to help her and >strangle her ... I want her to have a normal teen age life, but I don't >want her to get in trouble. I " m not asking too much am I? > >Anyway - any specific informatino would be helpful. Thanks for listening. >LINDA >(Mom of Suzanne, 16; UC 1/04, PSC 3/04) > >Cancer prevention in inflammatory bowel disease and the chemoprophylactic >potential of 5-aminosalicylic acid. >Bernstein CN, Eaden J, Steinhart AH, Munkholm P, Gordon PH. > > " Recent data have suggested some potential preventative benefit of using >ursodeoxycholic acid in patients with ulcerative colitis and primary >sclerosing cholangitis. " >- >Ursodeoxycholic acid as a chemopreventive agent in patients with ulcerative >colitis and primary sclerosing cholangitis. >Pardi DS, Loftus EV Jr, Kremers WK, Keach J, Lindor KD. > > " In addition, a recent report suggests that it also may decrease the risk >for developing colorectal dysplasia in patients with ulcerative colitis >(UC) and primary sclerosing cholangitis (PSC). " >- >Intestinal absorption of ursodeoxycholic acid in children and adolescents >with inflammatory bowel disease. >Fujisawa T, Kimura A, Ushijima K, Nakashima E, Inoue T, Yamashita Y, Kato >H. > > " Malabsorption of ursodeoxycholic acid was not observed in any patients >with ulcerative colitis. " > >----------------------------------------------------- >Geoff,My daughter(18) can't take Urso,because it causes more uc >problems for her. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Dear , My son also has urgency and hits the BR 8 times a day. He takes 1,250mg of urso and even though he has been on asacol, prednisone and imuran, nothing has controlled his UC which is why he is having a colectomy. I , too, wondered about the Urso but my son's GI keeps telling me that it is not the Urso. Lee > , Geoff and others, > I don't remember hearing that Urso can cause problems with UC. What > kind of information is available on this or is it more antecdotal > information? I looked at the PSC Literature and posted what I could > find. None of these talk about Urso complicating UC. > > This has my attention because Suzanne is in her fifth week of a flare > up with UC. Actually the flare up has lasted longer, she has been on > cort enema for four - going into her fifth week. We are seeing a > doctor in two weeks. If there is any specific literature on UC and > Urso I would like to be able to share it with the doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Mom of Suzanne I don't know about the literature, but I too have had this problem. I was told by my hep. that it is the first time he has seen it and is likely a set of bad luck (UC, J pouch and Chronic Pouchitis). He is a young man so don't know that this is super significant, although he sees quite a number of PSCers. You don't have to pour over the literature to find the possibility however. The PDR (Physicians Desk Reference) is a 4000+ page reference book used in medical settings. Under URSO and the side effects in the gastro section, it notes in the top three within this area, and you guessed it, diarrhea.. As I understand it, for this to appear in the PDR it had to be reported by some " subjects " when the original trails for the drug were being conducted. I gather it is a rare complication. I could tolerate lower doses (those now proven NOT to change the course of PSC) but not the high dose regimen. All the Best jd, 44 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 ston City, IL krmpotich@... Ursodil & UC > , Geoff and others, > I don't remember hearing that Urso can cause problems with UC. What kind of information is available on this or is it more antecdotal information? I looked at the PSC Literature and posted what I could find. None of these talk about Urso complicating UC. > > This has my attention because Suzanne is in her fifth week of a flare up with UC. Actually the flare up has lasted longer, she has been on cort enema for four - going into her fifth week. We are seeing a doctor in two weeks. If there is any specific literature on UC and Urso I would like to be able to share it with the doctor. > > I am becoming very frustrated and dismayed with all of this. Her liver enzymes have been maintained in the normal range, but the UC is getting worse. She is going to the bathroom on an average of 8 times a day (bowel movements) and each one is with such urgency that she has not always made it. I want to help her and cannot. Also, I just found out that she took my husband's business car (a jeep with his business name plastered all over it) for a joy ride with some of her teen friends. I want to help her and strangle her ... I want her to have a normal teen age life, but I don't want her to get in trouble. I " m not asking too much am I? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Geoff We are in the same boat... except my Hep was suprised, not warning of this side effect, and my long time RPh. said what the -ell is this being prescribed for and what is it! All the Best jd, 44 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 ston City, IL krmpotich@... > even in those patients whose primary sclerosing cholangitis was associated > with ulcerative colitis. " > > I guess I'm one of the few that had adverse gastrointestinal effects. I > tried twice within two weeks and each time I developed symptoms of cramps, > bleeding, and diaheria within a day or two but both times stopped before the > symptoms got worse. I'm pretty sure it was related to Ursodiol because each > time I stopped taking it the symptoms went away. My doctor and pharmasist > both warned that it was tough on the stomach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Lee It is correct that it is rare. It is not correct that it doesn't happen. It can happen, to be sure. I tested it several times and there was a definite cause and effect. I'm sure you have seen my recent posts on this topic. My experience was so clear and extreme, even without a bumb colon in place, the only logical option was to not take URSO. All the Best jd, 44 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 ston City, IL krmpotich@... Re: Ursodil & UC > Dear , > My son also has urgency and hits the BR 8 times a day. He takes 1,250mg > of urso and even though he has been on asacol, prednisone and imuran, > nothing has controlled his UC which is why he is having a colectomy. I > , too, wondered about the Urso but my son's GI keeps telling me that it > is not the Urso. > Lee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 JD, I guess it is too late to test it now. On the other hand his frequency was extreme before the urso too which is probably why his GI doesn't blame the urso. Still, I guess it is in the back of my mind that maybe the reason the asacol , imuran and prednisone didn't work is because of the urso. However, I suppose it is more likely that his colon was already so damaged that the drugs were never absorbed right as evidenced by undigested pills. Lee > Lee > > It is correct that it is rare. It is not correct that it doesn't > happen. It > can happen, to be sure. I tested it several times and there was a > definite > cause and effect. I'm sure you have seen my recent posts on this > topic. My > experience was so clear and extreme, even without a bumb colon in > place, the > only logical option was to not take URSO. > > All the Best > > jd, 44 > UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 > ston City, IL > krmpotich@... > > > Re: Ursodil & UC > > > > Dear , > > My son also has urgency and hits the BR 8 times a day. He takes > 1,250mg > > of urso and even though he has been on asacol, prednisone and > imuran, > > nothing has controlled his UC which is why he is having a > colectomy. I > > , too, wondered about the Urso but my son's GI keeps telling me > that it > > is not the Urso. > > Lee > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2005 Report Share Posted June 9, 2005 Lee I think in your situation you are precisly right. What I would add is that removal of the colon should restore some large measure of health perhaps as early as while still in the hospital, but he may still not be able to tolerate the URSO post colon. Keep us all posted as to how it goes. All the Best jd, 44 UC 1973, Jpouch 2000, Chronic Pouchitis 2001, PSC 2004, Stage 3 ston City, IL krmpotich@... Re: Ursodil & UC JD, I guess it is too late to test it now. On the other hand his frequency was extreme before the urso too which is probably why his GI doesn't blame the urso. Still, I guess it is in the back of my mind that maybe the reason the asacol , imuran and prednisone didn't work is because of the urso. However, I suppose it is more likely that his colon was already so damaged that the drugs were never absorbed right as evidenced by undigested pills. Lee Quote Link to comment Share on other sites More sharing options...
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