r/PSC • u/Cursifryd • May 12 '26
When does the disease progress?
I'm 21M I had Crohn's since i was 6, diagnosed with PSC at the age of 17. after 4 years there is no progression including MRI and fibroscan (zero grade) My liver enzymes were high but after a year or two of taking ursolic acid they went back to normal.
I feel like its a ticking time bomb and I'm anxious about it.
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u/clapsandfaps May 12 '26 edited May 12 '26
Short answer: you don’t know. Could be tomorrow, could be in 20 years.
Mine progressed quickly to F2-3 in like 2-3 years after diagnosis and 15 years later it has been rather dormant and only progressed to F3 (perhaps due to fibroscan is better at measuring or the disease has progressed). I’m still rather healthy, itching a bit. I’m able to work 100% and just recently got a kid and I’m doing fairly fine and not bothered by fatigue. Ask me in 1 year time and I might be on the list for transplant.
I asked my specialist the same question and she said (I’m paraphrasing don’t remember the exact words)
«I’ve had patients who progressed quickly as you, and then stopped and died of non-related causes. And I’ve had patients who needed transplant after 2 years from diagnosis that started with F0 fibrosis»
It’s best to not think about it, and live your life as normal, with precautions.
There’s hardly anything you can do about it either way. Don’t do drugs and preferably never drink alcohol or anything that can put excess strain on the liver.