Guest guest Posted March 30, 2008 Report Share Posted March 30, 2008 My husband has PSC, Crohn's disease, and Spondyloarthropathy (arthritis). Although he was officially diagnosed with PSC two years ago we believe he had it at the onset of the Crohn's 3 1/2 years ago. He really hasn't had any symptoms of the PSC until recently and even then the only symptoms are yellow eyes and high billirubin levels. The other liver panel numbers are not above normal although they are elevated and trending upward from his baseline. The doctors are worried and are not sure if it is related to the 6MP dose that he takes for the Crohn's and arthritis or if it is the PSC. He had an ultrasound and it showed his gallbladder is distended and the duct leading to the liver is narrowed and the main bile duct is dialated as well as other ducts in the liver. When he was first diagnosed none of that was happening. I really don't know what all that means in terms of disease progression. I found this site while I was trying to research PSC and so I was hoping that there are others out there that can maybe relate to this for me. I am a worried about my husband and we have two young daughters, so I was really hoping to connect with others who also have to deal with this. Is there anyone that has had these symptoms or similar symptoms that can tell me how it worked out for them. If it was a disease progression for them or something else. His doctor is waiting on doing an ERCP because he doesn't think that he wants to disrupt the liver until he absolutely has to. My husband isn't a person that reads other people's blogs but he was very interested when I showed him this group. We are looking forward to asking others in the same situation questions and learning new information. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 I had similar findings in 2001 (common bile duct stenosis and " beading " , jaundice, URQ pain, distended gallbladder). My CBD was dilated and stented at Mayo, Rochester in the spring of 2001 (stent removed 2 weeks later). In the fall of 2001, my gallbladder was removed ( " 3X normal size, clearly diseased " ). Although I never experienced pruritis or fatigue, I've been symptom free since (no elevated LFTs, jaundice, URQ pain, etc.). I can't say that dilatation, stenting and cholecystectomy are the reasons (many others have had similar procedures) - just what I've observed. I'm also on high-dose URSO, sulfasalazine, milk thistle, SAMe. Welcome - and keep asking those great questions! Arne 56 - UC 1977, PSC 2000 Alive and well in Minnesota ---- megasam2 megasam2@...> wrote: ============= ....He had an ultrasound and it showed his gallbladder is distended and the duct leading to the liver is narrowed and the main bile duct is dialated as well as other ducts in the liver. When he was first diagnosed none of that was happening. I really don't know what all that means in terms of disease progression... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 I am curious if any one has experienced dizziness on urso.i am having the room spin x 2 days at least 5x a day whether i am laying down or standing?//I'm 2 weeks into taking 1500mg a day Re: New Member with questions I had similar findings in 2001 (common bile duct stenosis and "beading", jaundice, URQ pain, distended gallbladder) . My CBD was dilated and stented at Mayo, Rochester in the spring of 2001 (stent removed 2 weeks later). In the fall of 2001, my gallbladder was removed ("3X normal size, clearly diseased").Although I never experienced pruritis or fatigue, I've been symptom free since (no elevated LFTs, jaundice, URQ pain, etc.). I can't say that dilatation, stenting and cholecystectomy are the reasons (many others have had similar procedures) - just what I've observed. I'm also on high-dose URSO, sulfasalazine, milk thistle, SAMe.Welcome - and keep asking those great questions!Arne56 - UC 1977, PSC 2000Alive and well in Minnesota---- megasam2 <megasam2 (AT) yahoo (DOT) com> wrote: ============ =...He had an ultrasound and it showed his gallbladder is distended and the duct leading to the liver is narrowed and the main bile duct is dialated as well as other ducts in the liver. When he was first diagnosed none of that was happening. I really don't know what all that means in terms of disease progression. .. No Cost - Get a month of Blockbuster Total Access now. Sweet deal for Yahoo! users and friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 I am curious if any one has experienced dizziness on urso.i am having the room spin x 2 days at least 5x a day whether i am laying down or standing?//I'm 2 weeks into taking 1500mg a day Re: New Member with questions I had similar findings in 2001 (common bile duct stenosis and "beading", jaundice, URQ pain, distended gallbladder) . My CBD was dilated and stented at Mayo, Rochester in the spring of 2001 (stent removed 2 weeks later). In the fall of 2001, my gallbladder was removed ("3X normal size, clearly diseased").Although I never experienced pruritis or fatigue, I've been symptom free since (no elevated LFTs, jaundice, URQ pain, etc.). I can't say that dilatation, stenting and cholecystectomy are the reasons (many others have had similar procedures) - just what I've observed. I'm also on high-dose URSO, sulfasalazine, milk thistle, SAMe.Welcome - and keep asking those great questions!Arne56 - UC 1977, PSC 2000Alive and well in Minnesota---- megasam2 <megasam2 (AT) yahoo (DOT) com> wrote: ============ =...He had an ultrasound and it showed his gallbladder is distended and the duct leading to the liver is narrowed and the main bile duct is dialated as well as other ducts in the liver. When he was first diagnosed none of that was happening. I really don't know what all that means in terms of disease progression. .. No Cost - Get a month of Blockbuster Total Access now. Sweet deal for Yahoo! users and friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2008 Report Share Posted March 31, 2008 I am curious if any one has experienced dizziness on urso.i am having the room spin x 2 days at least 5x a day whether i am laying down or standing?//I'm 2 weeks into taking 1500mg a day Re: New Member with questions I had similar findings in 2001 (common bile duct stenosis and "beading", jaundice, URQ pain, distended gallbladder) . My CBD was dilated and stented at Mayo, Rochester in the spring of 2001 (stent removed 2 weeks later). In the fall of 2001, my gallbladder was removed ("3X normal size, clearly diseased").Although I never experienced pruritis or fatigue, I've been symptom free since (no elevated LFTs, jaundice, URQ pain, etc.). I can't say that dilatation, stenting and cholecystectomy are the reasons (many others have had similar procedures) - just what I've observed. I'm also on high-dose URSO, sulfasalazine, milk thistle, SAMe.Welcome - and keep asking those great questions!Arne56 - UC 1977, PSC 2000Alive and well in Minnesota---- megasam2 <megasam2 (AT) yahoo (DOT) com> wrote: ============ =...He had an ultrasound and it showed his gallbladder is distended and the duct leading to the liver is narrowed and the main bile duct is dialated as well as other ducts in the liver. When he was first diagnosed none of that was happening. I really don't know what all that means in terms of disease progression. .. No Cost - Get a month of Blockbuster Total Access now. Sweet deal for Yahoo! users and friends. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Hi Pam, I had problems with the 1500mg of Urso, but it manifest in terrible headaches (almost migrane like). While I did not have dizziness, I had plenty of nauseas from the headaches, so I did have my doctor change the meds to a different manufacturer, and have since had no problems. He mentioned that even though the compounds are similar, some people have reactions to one and not the other - but offered no further explanation. I hope that you are able to get it resolved quickly because we already have enough to deal with, and the last thing we need is our meds giving us problems. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Hi Pam, I had problems with the 1500mg of Urso, but it manifest in terrible headaches (almost migrane like). While I did not have dizziness, I had plenty of nauseas from the headaches, so I did have my doctor change the meds to a different manufacturer, and have since had no problems. He mentioned that even though the compounds are similar, some people have reactions to one and not the other - but offered no further explanation. I hope that you are able to get it resolved quickly because we already have enough to deal with, and the last thing we need is our meds giving us problems. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Hi Pam, I had problems with the 1500mg of Urso, but it manifest in terrible headaches (almost migrane like). While I did not have dizziness, I had plenty of nauseas from the headaches, so I did have my doctor change the meds to a different manufacturer, and have since had no problems. He mentioned that even though the compounds are similar, some people have reactions to one and not the other - but offered no further explanation. I hope that you are able to get it resolved quickly because we already have enough to deal with, and the last thing we need is our meds giving us problems. Take care. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Thank you so much!! I will talk with my doc about changing my pills if it turns out that I do not have an inner ear problem.There was a day that i had a terrible pain going thru my rt eye when i turnhed my head.There is also a slight nausea Re: New Member with questions Hi Pam,I had problems with the 1500mg of Urso, but it manifest in terribleheadaches (almost migrane like). While I did not have dizziness, Ihad plenty of nauseas from the headaches, so I did have my doctorchange the meds to a different manufacturer, and have since had noproblems. He mentioned that even though the compounds are similar,some people have reactions to one and not the other - but offered nofurther explanation.I hope that you are able to get it resolved quickly because we alreadyhave enough to deal with, and the last thing we need is our medsgiving us problems. Take care. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Thank you so much!! I will talk with my doc about changing my pills if it turns out that I do not have an inner ear problem.There was a day that i had a terrible pain going thru my rt eye when i turnhed my head.There is also a slight nausea Re: New Member with questions Hi Pam,I had problems with the 1500mg of Urso, but it manifest in terribleheadaches (almost migrane like). While I did not have dizziness, Ihad plenty of nauseas from the headaches, so I did have my doctorchange the meds to a different manufacturer, and have since had noproblems. He mentioned that even though the compounds are similar,some people have reactions to one and not the other - but offered nofurther explanation.I hope that you are able to get it resolved quickly because we alreadyhave enough to deal with, and the last thing we need is our medsgiving us problems. Take care. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2008 Report Share Posted April 1, 2008 Thank you so much!! I will talk with my doc about changing my pills if it turns out that I do not have an inner ear problem.There was a day that i had a terrible pain going thru my rt eye when i turnhed my head.There is also a slight nausea Re: New Member with questions Hi Pam,I had problems with the 1500mg of Urso, but it manifest in terribleheadaches (almost migrane like). While I did not have dizziness, Ihad plenty of nauseas from the headaches, so I did have my doctorchange the meds to a different manufacturer, and have since had noproblems. He mentioned that even though the compounds are similar,some people have reactions to one and not the other - but offered nofurther explanation.I hope that you are able to get it resolved quickly because we alreadyhave enough to deal with, and the last thing we need is our medsgiving us problems. Take care. You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. Quote Link to comment Share on other sites More sharing options...
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