Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 Looks like psc developes with very different speeds in different cases. And like pointed out earlier, new diagnostic methods have made the time of dx much earlier in many cases and new medications and procedures (UDCA and dilatations) have made the progress slower. I would say, that 10 years as a prognosis is old information. And even that is a average. We know, that for some people the desease developes quite fast. That means there must be some people, where the desease takes much longer time to develope. Looks like the disease also sometimes developes faster and sometimes slower in the same person. Or like Barb writes, one can almost see a remission or a quiescent disease in the developement of the desease. Why? I believe, that this is something that all PSC patients would like to know more about. Best greetings UC/small duct PSC '83, large duct psc 97 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 I don’t know about remission but I can tell you that my son is totally asymptomatic. He was dx’d because his LFT’s were found to be elevated during routine lab work. We likely wouldn’t have known for another 20 years about his PSC. I doubt, though, that remission is what his doctor would call his condition. His PSC is progressing very slowly as it often does. From: [mailto: ] On Behalf Of Barb Henshaw Sent: Tuesday, May 01, 2007 1:24 AM To: Subject: RE: Re: How long have we got? -----Original Message----- From: pscsupport@... Most liver clinics would agree that 40% or more of PSC patients are now diagnosed with asymptomatic PSC. Question - isn’t this a misnomer of sorts? Wouldn’t you have to have some sort of symptom (sign) in order to be diagnosed? They just don’t pick some guy off the street and say, hey, lets check for PSC. I would think there truly wouldn’t be any asymptomatic patients. What makes a doctor even look for PSC, if there isn’t some sort of symptom? The bloody disease never goes into remission! About a year ago I started a pretty big uproar over my use of the word “remission”, but now several doctors are using the term. I believe even Dr Lindor did in a study that was posted a week or so ago. PSC can and sometimes does go into remission. Barb in Texas _._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 I'm not sure I would use the term " remission " ..asymptomatic seems more suitable to me. In many cases, PSC first appears during routine blood tests...no one presenting without symptoms asks to be checked for PSC. I started flunking blood tests for life insurance, and two years later, I finally had my diagnosis. I went without any symptoms other than elevated enzymes for six years. I wasn't in remission...the PSC was always there. I was just fortunate enough to have nothing besides terrible blood tests to show for it. So, asymptomatic, yes. Remission, no. Tom PSC 1999 UC/Crohns 2005 > > I don't know about remission but I can tell you that my son is totally > asymptomatic. He was dx'd because his LFT's were found to be elevated > during routine lab work. We likely wouldn't have known for another 20 years > about his PSC. I doubt, though, that remission is what his doctor would > call his condition. His PSC is progressing very slowly as it often does. > > > > _____ > > From: [mailto: ] On > Behalf Of Barb Henshaw > Sent: Tuesday, May 01, 2007 1:24 AM > To: > Subject: RE: Re: How long have we got? > > > > -----Original Message----- > From: pscsupport@... > Most liver clinics would agree that 40% or more of PSC patients are now > diagnosed with asymptomatic PSC. > > Question - isn't this a misnomer of sorts? Wouldn't you have to have some > sort of symptom (sign) in order to be diagnosed? They just don't pick some > guy off the street and say, hey, lets check for PSC. I would think there > truly wouldn't be any asymptomatic patients. What makes a doctor even look > for PSC, if there isn't some sort of symptom? > > > > The bloody disease never goes into remission! > > About a year ago I started a pretty big uproar over my use of the word > " remission " , but now several doctors are using the term. I believe even Dr > Lindor did in a study that was posted a week or so ago. PSC can and > sometimes does go into remission. > > > > Barb in Texas > > > > _._,___ > Quote Link to comment Share on other sites More sharing options...
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