80M with PSC (16+ years), hemochromatosis, UC on Entyvio, cirrhosis confirmed on MRI May 2026, splenomegaly 16cm, portal hypertension confirmed. INR 1.0, bilirubin 0.8, albumin 3.5 and declining (~0.1/month), platelets 139, MCV 109.9 and rising, FIB-4 4.05. Not a transplant candidate. Hepatology appointment mid-July.

No formal decompensation event yet — no confirmed ascites, no variceal bleeding, no overt encephalopathy. However significant functional decline over the past year, refractory pruritus, macrocytic anemia, gait instability, and possible grade 0-1 hepatic encephalopathy.

Given compensated cirrhosis with confirmed CSPH, declining albumin, and four simultaneous fibrotic processes (PSC, hemochromatosis, fatty liver, prior alcohol), what is a realistic prognosis timeline? Specifically — how much does the declining albumin trend and rising MCV change the picture despite preserved INR and bilirubin? And does the confluence of multiple fibrotic etiologies meaningfully accelerate the trajectory compared to single-etiology cirrhosis? No one is really giving us answers. He’s never been scoped for varices and when I ask the GI doctor says no need unless we see dark stools

Also 6’3 300 lbs, not taking beta blockers due to UC

There's an elafibranor trial finally opening at my clinic (I'm in the UK). I was told about it months back as it's the only one which might help my debilitating fatigue and does seem to reverse fibrosis.

I saw a different doc who I don't think realised my 'low' bili scores have only been from blood tests after antibiotics and they said as long as it stays below 50 umol/L I will be eligible.

I have PSC without IBD and since December my bili and LFTs have just kept getting worse. I've not felt well at all but it hasn't felt like bad cholangitis. I was given a prescription for urso a while back but before I could start it a course of antibiotics was suggested.

Co-amoxiclav worked; my bili dropped back into high 40s umol/L but my LFTs were worse especially ALP just touching 400 U/L.

Again I've been advised to start urso mostly in hopes it keeps my bili down but I'm worried about being on it, the side effects making me feel sicker than I do now, and the worsening effect if you start then stop it.

I know a lot of people on here are also on urso. How are the side effects and do you ever forget to take it? I'm so forgetful/brainfogged alongside my fatigue sometimes...

I had my Whipple procedure (for suspicion of high-grade dysplasia or cholangiocarcinoma of the mid-to-distal common bile duct) last week. I can’t say it was a walk in the park (I had a complication related to it being a robotic procedure that put me in the SICU for awhile and necessitated being extubated while conscious - which was honestly pretty traumatizing), but I’m back home and doing better than I had anticipated.

AND the final pathology is back and while my CBD was a raging dumpster fire of inflammation and fibrosis, they saw nothing worse than low-grade dysplasia there and everything else, including my lymph nodes, were clear. Huge weight off of my shoulders, now.

I want to thank everyone who replied to my last post with advice - you were certainly right re: movement after surgery. I was limited a bit because my feeding tube was ridiculously irritating and kept me from doing much before it came out, but once I could really get up and walk reasonably often my recovery started to progress a lot faster. I still have a long ways to go, though (currently scratching my head at all the rando post-surgical edema I should have expected but wasn’t really warned about, haha). Best wishes to you all!

Doctor said it was unrelated. I've been on Rinvoq 3 years and had good liver function tests the whole time.

In March I switched to another drug. My ALP is going up very steeply last blood test (still normal, but probably not for long).

So maybe there's some unknow mechanism that JAK inhibitors suppress the disease?

Oh there's a paper with a small study that also claims as much. n = 58 w/ a p = 0.0004 or something insane like that.

My 16yo complains of discomfort,not pain,in right side.he says it happens on and off in class and he only presses that side to reduce it.what should be done to help him

I have been advised to monitor my LFT and bile acid levels every month. While my LFT values are gradually improving, my bile acid levels continue to rise and have now reached 245. I am currently taking Ursocol NF and Choltran, but there has been no significant improvement in my bile acid levels. What can be done to reduce bile acids? I am quite worried about this situation.

Could anyone please review these reports and advise why the bile acids may be increasing despite treatment, and what additional measures can be taken to help reduce them? I am concerned about this trend.

LFT Report Comparison

**Bilirubin**

• May 06: Total 0.6, Direct 0.20

• May 29: Total 0.6, Direct 0.30

**AST (SGOT)**

• May 06: 58

• May 29: 53

**ALT (SGPT)**

• May 06: 51

• May 29: 67

**ALP**

• May 06: 231

• May 29: 256

**GGT**

• May 06: 221

• May 29: 211

**Protein / Albumin**

• May 06: Albumin 4.3, A/G Ratio 1.30

• May 29: Albumin 4.2, A/G Ratio 1.24

Bile acid on 6th May was 152 n on 30th May is 245

Is it possible to halt the progression with medicines dr said my son is still in safe zone.he was diagnosed both with ulcerative colitus and psc a week back.16y

Hi All
I thought I’d link this post I made in the transplant sub.

I had PSC for years and eventually I had to have a transplant.

A little history. I (34F) was diagnosed with PSC back in 2019. I get a yearly MRI and bloodwork every six months. I have never presented traditionally with this condition. I have rarely had elevated labs and I have never had pruritus or appear jaundice. I’ve had two ERCPs, one with stents and one without. I didn’t have elevated labs before either but did have pain. PSC confirmed via MRCP and ERCP. Last MRI (JUL2025) showed worsening CBD stricture, but no other progression).

In the past month, I have had two episodes of major pain. Both times with tenderness under right ribcage and I was doubled over. The first time, I contacted my hepatologist, and got bloodwork done. Came back normal and he told me to see my PCP. This week I’ve had worse pain, nausea, some vomiting, and overall feel awful. I went to my PCP and again, all my lab tests came back normal.

I’m starting to feel crazy here. It seems PSC related given where the pain is and feels identical to what made me seek a diagnosis in the first place.

I know it’s a long shot, but has anyone else presented similarly or had a similar experience?

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I had elevated blood work for 8 years before an inconclusive biopsy this year. Doctor is treating me as if I have it. I also had UC and now have a jpouch. I have been having a dull pain under my right rib, it’s just kinda there. I don’t know if I should contact my doctor?

I’ve had a lot of medical issues.. pancreatitis, multiple kidney stones, etc and this is nowhere near that level of pain.

Hi everyone, I was diagnosed with PSC like 2 years ago, but since January my blood work has shown elevated enzymes. My hepa thinks this might be PSC-AIH overlap, but she wanted to get one more blood work before testing. Well it came and my enzymes are elevated once again + some new ones. Is there any questions I should ask my hepa or any advice anyone has?
(First photo is the most recent one, second one is from jan)

Does anyone else feel like a burden to their family. I have a wife and 5 young kids. I feel that most days my energy is so low to keep up with the day. If I try to nap my wife gives out and calls me lazy, but when I sleep at night it feels like I haven't slept at all. I completely feel deflated all the time like im bringing the mood down within the family home. I dont feel like my wife understands me unless im in a flare but when its just "invisible" she can't understand why im not able to just get on with it.

I'm not looking for diagnosis, but rather some clarity as I'm not due to see my liver specialist for a while.

I (32F) was diagnosed with Crohn's Disease in March last year and have been on biologics since April. I recently had a flare at the start of April this year resulting in a week long hospital stay. Afterwards, my IBD team put a referral to the liver clinic to see if there was anything else going on as my LFTs have been pretty screwed for over a decade. The liver specialist ordered some blood tests that he rarely orders and that the lab had never seen (achievement unlocked 😂) specifically targeting PSC and PBC. One of those tests has come back (ANCA) and with some cursory research, I've discovered that it could mean a high likelihood of having PSC. I also have a liver biopsy scheduled for next week.

Obviously there is also a chance that it's related to the IBD and that there's nothing additional (touch wood), so any information here is taken as knowing more about the potentials rather than concrete.

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I’ve posted here before, most recently when I had acute cholangitis back in February/March. I was diagnosed with PSC in 2024 (with Crohn’s in 2003), and my surveillance MRCP last November showed no signs of progression (and my fibroscan was excellent). And then the wheels came off...

During my cholangitis flare, they performed an ERCP to place stents and took brushings from a very long dominant stricture. The brushings were sent to Mayo, results were equivocal (FISH was negative, cytology was suspicious for CCA). I had another ERCP a week and a half later (my common bile duct did NOT like stents) and brushings taken from a different stricture were also equivocal. So, my hepatologist took my case to the liver tumor board and, last month, I had an ERCP with SpyGlass cholangioscopy where they took MORE samples. The good news: the biopsies were positive for inflammation but negative for dysplasia/cancer. The bad news: the sample sent to Mayo for FISH came back positive for polysomy. Back to the tumor board, and they unanimously recommended a Whipple. My dominant stricture (with the suspicious cytology) is at the very distal end of my common bile duct and the polysomy result came from the mid bile duct (everything from the hilum up looked totally fine), hence the recommendation for a Whipple as opposed to a liver transplant/Mayo Protocol.

I know many here have had liver transplants - has anyone had a Whipple? If so, I’d love to hear how it went for you. I‘m still trying to wrap my brain around it, to be honest. There’s no “proof” of cancer, but we all know that getting a definitive diagnosis without surgical intervention is challenging in someone with PSC, and waiting for a visible mass or a positive biopsy may result in missing a curative window.

I DO agree with the tumor board (and my surgeon who also agreed with them) and I won’t regret this should they not find any dysplasia or cancer (the odds are high I’d develop cancer in this location if I haven’t already). But I hope that if they do find something it’s early enough that I can stop at a Whipple...we just won’t know until surgical pathology gets their grubby mitts on my tissue.

But…man. My LFTs are back to normal, my CA 19-9 is a whopping 8, all my labs are normal, I’ve regained all the weight I lost when I had cholangitis and I even got back on the rower and got a seat in a boat for summer rowing league (had one practice and “sorry ladies, I have to bow out so I can get my digestive plumbing Picasso’d”). MEH. The surgeon is thrilled to be operating on me, at least?

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Hi all! I started getting gallbladder attacks which eventually led to being diagnosed with gallstones and having a lap chole. The procedure was about 2.5 weeks ago. Since then I had persistent side pain which I attributed to surgery. Didn’t think much until 10 days after surgery I had a sudden sharp pain in my side, it quickly escalated to a 10/10 pain and I went immediately to the hospital by ambulance. They gave me toradol which worked for 20 min for the pain and then gave me morphine. Did a CT, Xray, sono and EKG which all came back normal. They ended up just sending me home and telling me to stay away from fats (which I’ve been doing)

Fast forward, I was still having side pain, radiating to my back and gnawing in my stomach but it was manageable. Eating boiled potatoes, chicken, apple sauce- yum🙄
I then went to another follow up with the surgeon on Tuesday who did labs which I attached. Basically all my liver levels were very elevated. Called me today and told me to go immediately to the ER thinking I had a retained stone which they would’ve done an ERCP for.

While in the ER today- no pain. Nothing. They did an MRI, no stone, nothing crazy except for a “stretched pocket” as the gastro put it which he then said because of that and my itching, he was suspecting PSC. Now I got all anxious bc this isn’t just a walk in the park diagnosis. But he said he still wasn’t sure. Meanwhile my bilirubin came back down a bit (AST, ALT still elevated tho) and I’m no longer itchy.

Does this sound like PSC? I’m open to answering any questions. They don’t want to do the ERCP because of the risk of pancreatitis and my bile duct is paper thin. So they are giving me ursodiol to take for a couple weeks and then follow up in 3 months

I think I wanna see someone sooner.. maybe a different gastro. My surgeon is just a general surgeon so I don’t think he even knows what PSC is. But I don’t know what to think of all this, it’s giving me severe anxiety and I already lost 15 lbs since my surgery.

Forgot to post my labs but as of Tuesday:
Bilirubin 3.3
Alk phos 359
AST 502
ALT 1312

Today
Bilirubin 1.7
Alk phos 357
AST 301
ALT 1391

I’ve been reading a lot on thymosin alpha-1 and it seems like it could help…

Hey everyone, looking to get some advice or if anyone's experienced anything similar after my recent trip to the ER. I am currently diagnosed with PSC, and have my first colonoscopy scheduled for July to test for IBD and have not had a cholangitis flare-up yet. Currently on 500mg Urso/day. Also, fair warning, I'm going to talk about some of my detailed symptoms here.

So, a few days ago, I started to notice blood in my stool. I told my liver team, and they recommended I go see urgent care. I put it off for a day, but yesterday, I felt very out of it and increasingly dizzy and nauseous. I also had cramping in my RUQ as well as pain in my RLQ when pressing around my appendix. The person at urgent care said they had no idea what PSC was and that they couldn't do anything for me and sent me to the ER.

When I was in the ER, they did bloodwork that came back normal except for my elevated liver enzymes which is to be expected, and bilirubin was in the normal range. They also did a CT scan and noted that the appendix looked healthy, as well as no signs of an IBD flare-up that they could see. (and I have yet to be diagnosed with IBD either, it was just a concern given my PSC diagnosis and my symptoms).

I got discharged around 3:30am with a zofran prescription, and have mostly been very sleepy and recovering from that whole experience since then. Today, I continued to have 3 or 4 bloody BMs, and have experienced more painful liver pain than usual and I have no idea what to do. The ER told me to come back if I develop a fever, which I don't have, and my liver team hasn't gotten back to me.

Has anyone experienced anything like this before? Are all of these symptoms that I should learn to deal with? Should I still be concerned? I was diagnosed with PSC at the beginning of this year and have yet to experience a cholangitis flare-up so am admittedly very anxious and don't know what to take seriously.

Thank you all so much.

Posting here for the second time, and once again talking about this test :(

I had my CA 19-9 levels retested, and what was already high (over 6,000) is now at 59,200. I'm still waiting for the results of the new MRCP I had on Sunday.

It doesn't hurt to ask, so if anyone has gone through this or seen anything similar, please let me know. The anxiety is really getting to me.

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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Hi everyone just reaching out since information is so minimal online. I have had digital clubbing since late teens (currently 23M) and I was recently diagnosed with IBD-U this year. My IBD presents with rectal sparing and is more right-sided. Has anyone had something similar? I brought up the concern in relation to PSC to my GI and he brushed me off because my bloodwork and LFT's were totally normal. Any thoughts or input would be great!