Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 I was diagnosed in Aug. 06 with PSC and mild UC. I was immediately started on 1500 mg. of Urso Forte. From the second day I started to get diarrhea and it never stopped. Two weeks ago I had to stop the Urso because the abdominal pains were so bad. Because of the escalation of pain and cramping, my doctor believes that the UC is now triggered so he put me on Asacol. I am careful with my diet, I went on the internet for a diet to use during flare-ups. It seems to be getting a bit better. I have an appointment with the GI doc on Oct. 16, which was supposed to be about another ERCP but now a set back. I cannot risk all this diarrhea and flare ups of UC with Urso but I know it is the only game in town. Anyone else have this or any comments? Thanks, Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Marsha, We were warned of diarrhea from Urso when upping Noah to the high dose of 30 mg/kg. We were lucky and did not see it, but Noah was under UC control with Asacol and Imuran already, so maybe that kept him from flaring. Mom of Noah (9) UC, PSC, Osteopenia ‘05 www.caringbridge.org/visit/noahwmartens I was diagnosed in Aug. 06 with PSC and mild UC. I was immediately started on 1500 mg. of Urso Forte. From the second day I started to get diarrhea and it never stopped. Two weeks ago I had to stop the Urso because the abdominal pains were so bad. Because of the escalation of pain and cramping, my doctor believes that the UC is now triggered so he put me on Asacol. I am careful with my diet, I went on the internet for a diet to use during flare-ups. It seems to be getting a bit better. I have an appointment with the GI doc on Oct. 16, which was supposed to be about another ERCP but now a set back. I cannot risk all this diarrhea and flare ups of UC with Urso but I know it is the only game in town. Anyone else have this or any comments? Thanks, Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Marsha, We were warned of diarrhea from Urso when upping Noah to the high dose of 30 mg/kg. We were lucky and did not see it, but Noah was under UC control with Asacol and Imuran already, so maybe that kept him from flaring. Mom of Noah (9) UC, PSC, Osteopenia ‘05 www.caringbridge.org/visit/noahwmartens I was diagnosed in Aug. 06 with PSC and mild UC. I was immediately started on 1500 mg. of Urso Forte. From the second day I started to get diarrhea and it never stopped. Two weeks ago I had to stop the Urso because the abdominal pains were so bad. Because of the escalation of pain and cramping, my doctor believes that the UC is now triggered so he put me on Asacol. I am careful with my diet, I went on the internet for a diet to use during flare-ups. It seems to be getting a bit better. I have an appointment with the GI doc on Oct. 16, which was supposed to be about another ERCP but now a set back. I cannot risk all this diarrhea and flare ups of UC with Urso but I know it is the only game in town. Anyone else have this or any comments? Thanks, Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Dear Marsha, I had the exact same trouble with Urso, which I tolerated for a month before I called the doc. He told me that about 1% of people have this complication and he simply increased my dose of Azulfadine to counteract it. In my case, he didn't believe I should stop the Urso because my bile ducts were getting increasingly worse at a more rapid rate than ever before. Later, we did decrease the Urso dose from 1250 mg. twice per day, to 750 mg. twice per day and increased my Azulf. from 1000 mg. to 1500 mg. twice per day. He'd rather I have a higher dose of Urso, but he doesn't think we can raise the dose of Azulf. any higher so... Hopefully, you can find a combination of Asacol and Urso that works, so you can continue the Urso. Best of luck, (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Dear Marsha, I had the exact same trouble with Urso, which I tolerated for a month before I called the doc. He told me that about 1% of people have this complication and he simply increased my dose of Azulfadine to counteract it. In my case, he didn't believe I should stop the Urso because my bile ducts were getting increasingly worse at a more rapid rate than ever before. Later, we did decrease the Urso dose from 1250 mg. twice per day, to 750 mg. twice per day and increased my Azulf. from 1000 mg. to 1500 mg. twice per day. He'd rather I have a higher dose of Urso, but he doesn't think we can raise the dose of Azulf. any higher so... Hopefully, you can find a combination of Asacol and Urso that works, so you can continue the Urso. Best of luck, (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Dear Marsha, I had the exact same trouble with Urso, which I tolerated for a month before I called the doc. He told me that about 1% of people have this complication and he simply increased my dose of Azulfadine to counteract it. In my case, he didn't believe I should stop the Urso because my bile ducts were getting increasingly worse at a more rapid rate than ever before. Later, we did decrease the Urso dose from 1250 mg. twice per day, to 750 mg. twice per day and increased my Azulf. from 1000 mg. to 1500 mg. twice per day. He'd rather I have a higher dose of Urso, but he doesn't think we can raise the dose of Azulf. any higher so... Hopefully, you can find a combination of Asacol and Urso that works, so you can continue the Urso. Best of luck, (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 mmenolan wrote: > > I was diagnosed in Aug. 06 with PSC and mild UC. I was immediately > started on 1500 mg. of Urso Forte. From the second day I started to > get diarrhea and it never stopped. ..... > ...... Anyone else have this or any comments? > Most folks tolerate urso really well, but I'm not one of them. :-) Urso gave me lots of abdominal pain, diarrhea, nausea, and horrible night terrors (something I'd never had before). We stopped the Urso and all those things went away. Then the drs. tried actigall (basically the same drug, but slightly different formulation), and it all started right back up again. We hoped that the side-effects might ease up as I continued the medicine, but instead they became more and more intense. Like you, the last thing I wanted was to bring on major flare-ups of my Crohn's. So we discontinued all Urso/Actigall. I realize that I'm not a typical patient, but the one thing that has eased my LFTs has been biliary stents and having the occasional ERCP to stretch the ducts. I think that's why researchers have had such a hard time nailing down exactly what relief can be proved to be directly caused by urso. My experience with urso was 5 years ago but my disease progression does not seem to have been any faster than it might have been with the urso. I guess what I'm saying is, don't panic or worry unnecessarily because you can't tolerate this particular medicine. Find the silver lining ... for me, it means that many fewer pills to swallow each day (and I do hate swallowing pills!!). Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 mmenolan wrote: > > I was diagnosed in Aug. 06 with PSC and mild UC. I was immediately > started on 1500 mg. of Urso Forte. From the second day I started to > get diarrhea and it never stopped. ..... > ...... Anyone else have this or any comments? > Most folks tolerate urso really well, but I'm not one of them. :-) Urso gave me lots of abdominal pain, diarrhea, nausea, and horrible night terrors (something I'd never had before). We stopped the Urso and all those things went away. Then the drs. tried actigall (basically the same drug, but slightly different formulation), and it all started right back up again. We hoped that the side-effects might ease up as I continued the medicine, but instead they became more and more intense. Like you, the last thing I wanted was to bring on major flare-ups of my Crohn's. So we discontinued all Urso/Actigall. I realize that I'm not a typical patient, but the one thing that has eased my LFTs has been biliary stents and having the occasional ERCP to stretch the ducts. I think that's why researchers have had such a hard time nailing down exactly what relief can be proved to be directly caused by urso. My experience with urso was 5 years ago but my disease progression does not seem to have been any faster than it might have been with the urso. I guess what I'm saying is, don't panic or worry unnecessarily because you can't tolerate this particular medicine. Find the silver lining ... for me, it means that many fewer pills to swallow each day (and I do hate swallowing pills!!). Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 MO425@... wrote: > > Hopefully, you can find a combination of Asacol and Urso that works, so > you can continue the Urso. > When they put me on Urso, I was already taking 8 asacol a day (and had been for nearly 7 years at that point). If the asacol was helping, then I hate to think how severe the side-effects might have been without it! , it's good to have you back! Your trip sounds like an absolute dream vacation. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 MO425@... wrote: > > Hopefully, you can find a combination of Asacol and Urso that works, so > you can continue the Urso. > When they put me on Urso, I was already taking 8 asacol a day (and had been for nearly 7 years at that point). If the asacol was helping, then I hate to think how severe the side-effects might have been without it! , it's good to have you back! Your trip sounds like an absolute dream vacation. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
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