Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Diagnosis is a definitely scary time - as Dawn said. The 10 years is the " standard " rule of thumb for diagnosis to transplant. However, it's quite possible that he's had PSC for some time already. My hep guessed I had had PSC for 10 years before I was diagnosed in 2000; I know I had symptoms for a couple of years - just didn't know what it was. There are a couple of people here who were diagnosed over 30 years ago and still doing quite well. My personal experience is that I've been symptom-free (normal LFTs, no URQ pain, no jaundice or itching) since balloon dilatation and stenting of my CBD in 2001, followed by gallbladder removal 4 months later. Almost everyone here takes high dose Urso (Actigall, Ursodiol, Urso-250, etc.) at 20-30 mg/kg. That's the first thing I'd ask. I take 2100 mg for my 180 (or so) pounds. I highly recommend http://www.pscpartners.org/ and the FAQs on http://www.psc-literature.org/ - and excellent starting place for questions. Feel free to ask questions - someone here will have the answer. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of trinaldi1 My husband is 34 and has had UC for 16 years, which has been well controlled. He was just diagnosed with PSC, after having " attacks " after having his gall bladder removed and elevated liver enzymes. So much of what I have read on the internet says he will die in 10 years without a liver transplant. Is this accurate? Have we received a death sentence? Or can people live for years with this?.. Quote Link to comment Share on other sites More sharing options...
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