I get the sense that one of the big questions that we all seem to have, at least those with new diagnoses, is how fast will the disease/liver damage progress.
I have looked at several of the “PSC Prognostication Calculators out there like the Mayo Clinic one, and the UK one, but they are lacking in utility.
So, my basic question for those that have had this disease is whether so far I am progressing rapidly, slowly, or normally … I know that past progression isn’t necessarily a sign of the future and all the other caveats. I get the sense that so far I am progressing relatively rapidly.
I have had UC for 37 years, and Type 1 diabetes for 24 years.
In 2016 my Alk Phos started being slightly elevated, so with the UC history, they did a MRCP and found fatty liver but no signs of PSC.
Did another MRCP, which showed signs of PSC, and then the Fibroscan scores showed stage 3 Fibrosis (12.8 kPa) and late fatty liver (400 dB/m). My liver blood tests are all still normal other than the Alk Phos, which is always slightly elevated.
My newbie sense is that this has progressed rather quickly over the last 5 years … from no signs to stage 3 Fibrosis in 5 years.
What are the thoughts of those who have been dealing with this for longer than I have been as to this rate of progression relatively speaking … fast? Slow? Normal?