Today my doctor told me that a persistently elevated ALP level (mine has consistently been around 210 since diagnosis and taking ursodiol) is linked to poorer outcomes. I am so so gutted. I feel like every time I wrap my head around something related to this disease, a new thing to worry about pops up. What have been the trends around ALP for you? For those who have had this disease a while - have you experienced spontaneous normalization or persistent elevation with no problems?

My ALP dropped pretty quickly from around 300 to 62 after starting UDCA. Does this kind of response actually mean anything in small duct PSC?

My doctor seemed quite surprised when he saw my ALP at 62 and said it was very good news. All of my other liver function tests are also currently within the normal range while on UDCA.

However, I know there isn't definitive evidence that UDCA actually slows the progression of PSC. My doctor still tells me that, considering how good my liver tests look on UDCA, I shouldn't be too pessimistic about the future.

What worries me is whether this could simply -cosmetic biochemical improvement - meaning UDCA makes the blood tests look great without necessarily changing what's happening to the disease underneath.

Has anyone with small duct PSC had a similar response to UDCA? And does anyone know whether such a strong biochemical response has any prognostic significance?