Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 a, Hi! I'm just curious. Do you know why they told you you'd need to be on URSO every day for the rest of your life? With all the studies being done that are doubting its efficacy, I'm just curious as to what their rationale was. I know a bunch of us are having some issues as we're being pulled off it, so I guess I'm hoping you'll have some info we can take back to our docs besides the fact that we're now itching up a storm! Thanks! Sandi in VA/Rochester p.s. I have no clue on the availability thing but I hope it gets straightened out for you soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Hi Sandi, My story is quite an unusual one. I was diagnosed with PSC last July just from ultrasounds and one ERCP where the result was " possible PSC " . In October (after joining this group in July) I noticed that I didn't have the symptoms that most peple were posting about. I then had a CT scan, MRI and bloodwork done through a clinic in Bologna specializing in PSC and other liver conditions. I was told that I did not have PSC but a very unusual rare liver condition where my liver constantly produces stones and sludge hence causing pain and scarring in bile ducts. I need the URSO to help my liver eliminate fats and other stuff I don't quite understand. I have been told that PSC may be an eventuality from this condition in the future...nobody seems to know. I'm sorry I don't have any new info for you and I hope the itching ceases soon. Regards, a > > > a, > > Hi! I'm just curious. Do you know why they told you you'd need to be on URSO every day for the rest of your life? With all the studies being done that are doubting its efficacy, I'm just curious as to what their rationale was. I know a bunch of us are having some issues as we're being pulled off it, so I guess I'm hoping you'll have some info we can take back to our docs besides the fact that we're now itching up a storm! > > Thanks! > > Sandi in VA/Rochester > > p.s. I have no clue on the availability thing but I hope it gets straightened out for you soon! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2009 Report Share Posted April 1, 2009 Hi Sandi, My story is quite an unusual one. I was diagnosed with PSC last July just from ultrasounds and one ERCP where the result was " possible PSC " . In October (after joining this group in July) I noticed that I didn't have the symptoms that most peple were posting about. I then had a CT scan, MRI and bloodwork done through a clinic in Bologna specializing in PSC and other liver conditions. I was told that I did not have PSC but a very unusual rare liver condition where my liver constantly produces stones and sludge hence causing pain and scarring in bile ducts. I need the URSO to help my liver eliminate fats and other stuff I don't quite understand. I have been told that PSC may be an eventuality from this condition in the future...nobody seems to know. I'm sorry I don't have any new info for you and I hope the itching ceases soon. Regards, a > > > a, > > Hi! I'm just curious. Do you know why they told you you'd need to be on URSO every day for the rest of your life? With all the studies being done that are doubting its efficacy, I'm just curious as to what their rationale was. I know a bunch of us are having some issues as we're being pulled off it, so I guess I'm hoping you'll have some info we can take back to our docs besides the fact that we're now itching up a storm! > > Thanks! > > Sandi in VA/Rochester > > p.s. I have no clue on the availability thing but I hope it gets straightened out for you soon! > Quote Link to comment Share on other sites More sharing options...
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