r/PSC

Some people with small-duct PSC have a rapid improvement in their liver blood tests after starting UDCA, and their ALP and GGT levels return to the normal range. In others, ALP and GGT remain elevated despite taking UDCA.

Is the long-term prognosis different between these two groups? Does normalization of ALP and GGT suggest a lower risk of disease progression, worsening fibrosis, or progression from small-duct PSC to large-duct PSC?

As far as I know, unlike in PBC, UDCA has not been clearly proven to slow the progression of PSC or improve long-term outcomes. So, does normalization of liver enzymes indicate a better prognosis, or does it only show that the blood test results have improved?

I would be interested to hear about other people’s experiences or any studies on this topic.

Hi everyone. I’m in the process of being diagnosed. I have high ALT, AST and GGT but normal ALP and bilirubin. I do not feel any symptoms so far other than fatigue - although I also have hashimotos, so it’s hard to say whether the fatigue comes from it or maybe PSC. I’m struggling to accept the possible diagnosis, so I’m trying to understand what comes ahead. I’d like to know for you who got diagnosed without any symptoms when did you start feeling them? I saw common ones are itching, lack of appetite, abdominal pain, etc.

Hello,

I'm kind of stuck in a situation where I'm fine living with my new liver since 10 years ago, but unfortunately, I was diagnosed with ulcerative colitis 2 years ago. They say I might have had it since my PSC diagnosis, but it decided to show itself just now :'D

Now my problem is that my UC is showing an atypical pattern, with the inflammation being mostly in the right colon. I've been trying all kinds of biologics since then, but I feel like it's just staying the same. Since it's on the right side, I don't have any major symptoms at least. The doctor told me that this is common for PSC associated UC, and I was wondering if anybody here has experienced the same? What did your doctors do?

I also came across a study that came out this month where they gave children with treatment-resistant PSC associated UC Vancomycin, and the cohort that had right-sided inflammation showed better results than the cohort that had left-sided inflammation (the "normal" UC type). And I think about talking with my doctors about this "option". (https://www.sciencedirect.com/science/article/pii/S159086582600753X?via%3Dihub)

I just recently got my diagnosis and while my symptoms are bad but not terrible yet I am trying to understand what will happen over the course of the next couple of years. One thing I don't really get is the sarcopenia (muscle loss) aspect.

Have any of you dealt with that specifically? For some reason it's more worrying to me than many of the other mid-stage symptoms. I live an averagely active life, I guess, but looking at the recommendations for PSC patients - 5x cardio, 2x resistance training every week - I wouldn't even know when to do that. Is such a strict and intense exercise regime really necessary to even make a dent into the muscle loss I'll apparently be facing? What even is causing the sarcopenia with PSC?

Apologies if this is a dumb question, I'm very overwhelmed by this turn of events in my life and am trying to understand what I need to adjust asap and what is less burning.

I had a clinic appointment and the doc did a physical exam for ascites, said "maybe" and then put me down for an urgent ultrasound.

I know I need to wait it out but it would be my first sign of decompensation and the not knowing is so hard. I have suspected cirrhosis so all they've told me in the past is just watch for jaundice, swelling and encephalopathy.

I'm 33F, coeliac and have splenomegaly and so abdominal distension can happen for so many reasons; a crumb of gluten, hormones, weight gain. I started urso 2 months ago and I feel like it's helped my fat digestion, too. My extremities aren't swollen but I do have abdomen distension no matter how empty my stomach is or what I eat or how many times I go to the toilet. My abdomen doesn't feel super hard or anything though.

While I wait I wondered if any of you have experienced ascites (early on) and what it was like if caught early on?

EDIT/UPDATE: my bloods came back and kidney function & albumin all good. Still need to have ultrasound but seems like a false physical observation.

I'm curious about other immune mediated diseases and autoimmune diseases in relation to PSC.

I've got PSC, UC and inflammatory arthritis. If you don't mind sharing, let me know what other diseases you have besides PSC.

Hi! I’m a 19 yo in Canada with PSC, and I really want to be put on vanco. However the last time I mentioned it she shut it down completely saying there’s no evidence. I really want to be proactive since I was not with my IBD and ended up getting dysplasia and needed a total colectomy. I really just want to be able to finish my degree without any more surgeries or complications:(

Hello. I'm a doctor in Germany. Recently, my little brother (29yo) came to me with heavily elevated GGT and an Hb of 8. I called my colleagues from internal medicine and they had him stay for gastro- and colonoscopy as well as other tests.

Everything right now looks like he will have PSC. Elevated GGT and AP (normal bilirubin and liver enzymes), the colonoscopy showed pancolitis (histology says it's looking more like colitis ulcerosa than Crohn's unfortunately). Ultrasound of his liver was almost normal, they couldn't really decide if he has no or very mild fibrosis (F0-1).

The MRCP will be done tomorrow.

I'm honestly freaking out. I'm worrying so much that I cry a lot. I can't focus on anything anymore my mind always drifts to my little brother having a terminal disease. I don't know how I can tell my mom. She will not be able to handle it. She loves us so much but she has depression herself and is constantly overworked. I think she'll break when she hears that my little brother might need a liver transplant in the future.

Please, I just need some reassurance. I know that the diagnosis is not 100% there yet, but when I talk to my colleagues and go through his findings, it's almost certain that he'll have PSC.

My mind can't take it. My heart can take it even less.

For those who are in Oral vanco, wich brand do you use ?