Diagnosed last month after about 6 years of thinking I only had a skin issue causing itching (prurigo nodularis). I’ve heard that a lot of people with PSC also report issues sleeping, so I’m wondering what does that actually look like for you? Any luck remedying it?

I also have diabetes Insipidus which means I don’t concentrate urine without meds, so I have been getting up to pee at least once a night for 20 years. But in the last couple years it’s to the point where I wake up every 2 hours on an average night. Good night of sleep means I sleep deeply for those 2 hours and bad night of sleep is more restless.

My therapist asked if I wanted to be referred to a psychiatrist for sleep meds & for some reason I am hesitant. Maybe I am pessimistic that it will ever get better & don’t want to be dependent on yet another medication. Would love to hear your experiences.

Hi. My daughter had very high liver labs and very active UC. She is 15 now. A little over a year ago, she started taking Oral Vancomycin. 1500mg a day. Two 250mg capsules from ANI three times daily.

Well, within a month, her UC went into remission. Within a couple months all her liver labs normalized. Needless to say, as a single father whose has raised her full time, I can't express enough how massive the blessing this was. She has grown and thrived and lived a normal life since.

However, my pharmacy Osco just notified me they will no longer procure the ANI brand (because it costs too much). I am going to try to seek out other PHarmacies. While I know there are other brands that have worked, I also have heard there are some that don't. Things have been going so well, I am very concerned about switching. I don't want to switch what is working so well.

Are there any in this community that have experience in this? What are the known brands of Oral Vanco that are effective just in case I have no choice?

Is anyone on the liver transplant list? How long have you been on it?

Anyone on it? Thoughts?

I now have suspected PSC after liver doctors treated me for 6 months with wrong meds for AIH even though I had 2 liver biopsies that were negative for AIH. They made me take Tacrilimus and Mycrophenolate for all this time and my bloods never went down. I kept arguing with them that the meds were not working but did they listen.. No! During my illness I have been plagued with chronic diarrhoea
Then a lady doctor phoned me to tell me she suspected that I had PSC after all this time on the wrong meds.
I have started on URSO and am also looking for information on Vancomycin has anybody taken this and would it help with chronic diarrhoea?

Hello -- I was diagnosed a few years ago and have been lucky enough not to have experienced any symptoms until now. Over the past few months I've had dull pains in my upper abdomen from time to time. A few times it felt severe, but would go away within an hour.

I did an MRCP last month, and when I checked in about results (since I don't see my hepatologist for several months from now) the nurse wrote "there might be a small stone in the common bile duct" & if I have fever or too much pain, I'll have to go to the ER to rule out cholangitis.

I was wondering if anyone has experienced having a stone in the common bile duct -- what should I be looking out for? It seems kind of weird to me that it's a situation of just waiting until things get bad enough that I have to go to the ER. This disease is still new to me, so any advice or explanation is very welcome. Thank you!

Hi everyone, as the title says, how do you cope with fatigue? I’ve actually been diagnosed for 7 years now, and you’d think I’d have come to terms with the condition by now. I think that works well as long as the symptoms are still manageable. I’ve had severe upper abdominal pain, as well as itching and bouts of fatigue, which I was usually able to fully recover from within 3 to 4 weeks. However, I’ve now been stuck in a period of fatigue for about 3 months that I can’t really seem to shake off. There are phases when I’m okay, but somehow I just can’t seem to get back to the energy level I had at the beginning of the year. For the last 3 weeks, I’ve been happy just to manage the bare essentials—like getting up, cooking meals, and so on. I’m a father of two young children, a homeowner (and I love working on my house, of course), and I work full-time. I’m well aware that certainly not everything can be explained by PSC and that other external factors are at play here, but I’m sure there are more people like me who find themselves in a similar situation. How long do these phases last for you? Do you eventually get your energy levels back, or do they just keep getting lower and lower? How do you deal with this?

I’m currently being treated by a gastroenterologist (who’s basically become like a family doctor to me) and a hepatologist. So far, everything has gone very well in terms of the available treatment options, though when it comes to fatigue, I feel like neither doctor has the right expertise. I’ve now been referred to a liver center at a university hospital and to a neurologist, but unfortunately, the wheels of the healthcare system turn very slowly here, so I’ll probably have to wait forever for an appointment since my case isn’t “urgent” enough.

Aside from all the doctors’ opinions, I’d just like to hear from people who have the same problem—what they’ve tried and how they manage their lives with fatigue as a symptom.  I’m lucky to have a wife who fully supports me, as well as a family and circle of friends who have always helped me in critical situations. However, I do feel like I’m a burden to them, especially during the periods of severe fatigue.

Hello,

the question above. I have tried to search the forum but did not find all that much. Background is the complex medical history of my wife (I wrote about it about three months ago).

All the bloodwork is in range and has been for one year now. No medication at all.

Did you experience similar episodes?

Thank you!

Hi everyone,My 25-year-old brother was recently told he likely has Primary Sclerosing Cholangitis (PSC). His doctor said he needs an MRCP (MRI) to confirm the diagnosis. As well as Autoimmune hepatitis.

We’re trying to stay positive, but naturally we’re scared. Most of what comes up on Google is worst-case scenarios, so I’d really appreciate hearing from people who have actually lived with PSC or have a loved one with it especially in a similar age.

A few questions:
How old were you when you were diagnosed?
What were your first symptoms?
How quickly has your disease progressed?
Have you been able to work, travel, and live a relatively normal life?
How often do you need MRIs, blood work, or procedures?
Has anyone here needed a liver transplant? If so, how long after diagnosis, and how has life been since?
Is there anything you wish you had known when you were first diagnosed?
Any advice for family members on how we can best support him?
Is this terminal ?

We’re hoping for honest experiences—the good, the bad, and everything in between. I know everyone’s journey is different, but hearing from people who have been through this would mean a lot.

Thank you all.

I’ve been on ursafalk (ursadiol) since diagnosis well over a decade ago. My new dr wants me to go off it. No longer recommended he tells me. Anyways my ggt went through the roof.
Has anyone else had this? It appears ursadiol only masks the ggt level measured and doesn’t really affect the actually real ggt level… it just makes it look good.

Has anyone else heard this? Or had this happen?

Itching… I was diagnosed in 2017 and put on Ursodiol the same year. I have suffered from severe itching since diagnosis. I tried all known medications for itching. 3 weeks ago my liver doctor decided to stop the Ursodiol to see if this would make any difference. As of now the itching is about 85% reduced. I was told sometimes the itching will return so I will see. Hope this helps someone.

Complicated. I have chronic pancreatitis, a cysts, a fistula from one bursting, a clot near my liver, ulcerative colitis and vasculitis. These have only just come up in last few weeks, conveniently after I saw rheumatologist, they stay raised, they burn, they itch, worse at night. Have an appt with gastroenterology, but nothing about these. How do I go about it? All symptoms fit with it and pictures I’ve seen online. Also I know my body, they were going to discharge me before finding my two cysts. I insisted I stayed in. They found them, so I feel I am right about this. I know the whole don’t google things but I couldn’t know bugger all if it wasn’t for that and I wouldn’t know what direction to steer them in. Plus, I had a blood test to see about a type of arthritis, and it came back raised for vasculitis, no blood in urine or anything. Bled from rectum. Have proctitis. All fits. I feel I’m right…. Any advice ???

Hi all, just got the news today that I need a transplant. Its mostly due to recurring cholangitis and I have small stones in the intraheptic ducts which cannot be reached with an ercp. My bloods aren't crazy and I don't get jaundice. I get the extreme pain. They want to do the transplant before it develops and I get severely ill. Has anyone ever jad a transplant without being on "deaths door" i always taught you would need to be really really sick before transplant.

Hey everyone, just wanting to see if anyone has been in a similar boat and can offer any insight or advice. I was diagnosed with PSC in 2023 which was pretty asymptomatic until this year. I’ve been hospitalized twice now this year with cholecystitis and cholangitis with liver enzymes skyrocketing during active infection/inflammation.

I also have rheumatoid arthritis (diagnosed 2016) and ulcerative colitis (diagnosed 2024). I was finally stabilized on Etanercept q5d dosing for my RA but with the UC diagnosis they stopped that and switched me over to adalimumab q2w about 4 months ago and I am doing terrible with both UC and RA. I’ve been on high dose pred pretty much since starting as I have been in a flare since, and had a few corticosteroid injections for joint seizing. I need to figure this out because I’ve lost 45lbs in 4 months since starting this new biologic and the weight keeps dropping and I don’t have much left to give.

Rinvoq would be my next option for treatment trial however it is metabolized through the liver and my LFTs have been all over the place depending on degree of cholangitis, masses were also discovered in my most recent MRCP so also waiting for next steps on that.

Has anyone been on Rinvoq while dealing with active PSC symptoms? I’m considering if ursodiol is something I could consider to manage LFTs while on the drug. Really just looking for somebody who’s been through anything similar as well so I can take it to my doctor with research.

Hey everyone. Kind of looking for some positivity so I don’t spiral. My 4 year old has been diagnosed with Autoimmune hepatitis, irritable bowl disease (they still don’t know which and it’s early onset) and PSC. Last year they did a liver biopsy and she was at stage 4 liver fibrosis before starting a low dose of azathioprine and prednisolone. They started her on sulfasalazine a few weeks ago and up until then has only had minor symptoms such as upset stomach. We found out all of this because she had blood in her stool when she was almost 3. She just started vancomycin today and will be starting ursodiol in a few days to weeks.

This is such a stressful experience and I try hard not to think much about it, just take it day by day and still live our lives, but I do think about what her future may look like and I’m so so scared. Especially with her being so young. In the beginning I blamed myself and kept wondering what I did to cause this but I know that’s not a healthy mindset. I’m grateful she hasn’t had severe life changing symptoms and I’m holding onto that. So if anyone has any positive stories or insight, please share. She has another liver biopsy and colonoscopy in August and praying for good news. Her labs go up and down quite a bit it feels like.

I have PSC and Crohn’s , I am on meds for both and I don’t have any symptoms currently.

My only symptom is sleep i have to sleep at least 12h or 16h a day , I really am crying because I don’t want to sleep I want to go out I want to go to the gym , I want to be normal again and I don’t know how 🫩🫩

Please I desperately need advice

Sorry for the long post but my doctor appts are widesread and I'm trying to understand how bad my case is as my case is going on for about 5 months now. My pcp did cmp just for followup blood work and my alt was 141 and ast was 96. He assumed mild fatty liver and asked me to go low carb/low sugar. 3 month followup he ordered a fibrosure plus test and I was showing positive for cirrhosis with no fat a in early February of 2026 which kicked off an ultrasound which showed slightly nodular contour and heterogeneous echotexture and everything else was normal. The ultrasound impressions says cirrhotic morphology. I got referred to a hepatologist and his 1st test was a fibroscan which measured 24kpa and a cap of 174. At this time, I have no symptoms and am able to do high intensity cardio exercises so I am panicking at this point. He assumed I had cirrhosis at this point and ordered a biopsy. It shows vague signs of cirrhosis but shows bile duct proliferation and portal tracts had mild lymphocytic inflammation which he said is classic for psc. He ordered an MRI/MRCP to rule out large duct psc.

The MRI/MRCP results show a normal bile ducts and a homogeneous appearance of the parenchyma. The other organs report normal except my liver and spleen are somewhat enlarged. I have had an enlarged spleen in the past and they said you may just have an oversized spleen. I have not seen my hepatologist to go over this yet (appt is mid-august), but his notes on my report says "confirmed small-duct psc". So I get this part as it is common with small-duct psc findings, but the report of a homogeneous parenchyma and the radiologist last impressions was the rest of the exam is within normal limits seems to indicate that it may not be cirrhosis yet. I posted part of the report below.

Has anyone had seemingly conflicting results with this disease? Or any insights in these findings from more experienced folks?

PSC and Liver section of the report:

IMPRESSION:

1. NO EVIDENCE OF INTRAHEPATIC OR EXTRAHEPATIC BILIARY DUCTAL DILATATION OR EVIDENCE OF BILIARY STRICTURE.
2. MILD HEPATIC AND SPLENIC ENLARGEMENT. NO SUSPICIOUS HEPATIC OR SPLENIC LESIONS ARE DEMONSTRATED.
3. THE REMAINDER OF THE EXAM IS WITHIN NORMAL LIMITS.

There signal throughout the liver and homogeneous enhancement is demonstrated with no suspicious cystic or solid lesions seen throughout the hepatic parenchyma. A Riedel's lobe morphology of the liver is noted.

Thank you for any information to help me navigate this as the doctor visits are far out and they dont tell you much.

I know these numbers seem low, at least for what I can use doctor google on during the weekend, results just came in and my doctor hasn’t had a chance to review. But guessing this has really just sprung up in the last 6 months it’s not in a big hurry but also not going in a good direction.

Hello everyone, I hope this finds you well. I just wanted to inquire if anyone else has been prescribed GLP1s as a part of their care plan? My doctor recently prescribed me, tirzepatide for its general anti-inflammatories and other benefits, but we did discuss potential side effect issues that may arise, specifically biliary, and gallbladder risks.

I was curious if anyone here is actively on the medication and if you found that the benefits outweigh the risks for your journey? Also, if there’s been any negative experience with side effects, I would love to hear those so I know what to look out for.

Hi friends,

I wish I could be here sharing a story that brings good vibes to everyone, but I think it’s important to share our struggles too.

I’m 36F, and as I mentioned in my previous posts, I had some tests come back with abnormal results (Ca 19-9 and MRCP). I was diagnosed with PSC only about 3 months ago, and earlier this week, I received the news that I also have cirrhosis and cholangiocarcinoma.

I feel like I barely had time to process and wrap my head around the initial diagnosis, and now I’m already starting oncology treatment.

These past few days have been incredibly tough—lots of crying, lots of fear. But I’m sharing this with you all in the hope that I can come back here in a while and tell you that everything turned out okay, and hopefully bring some hope to anyone else going through this. Please keep me in your thoughts/prayers. ❤️

I dont know if this helps at all, I just wanted to show that you can still have adventures despite PSC or a liver transplant, which is something I worried about for years when I was sick.

My grandpa just got diagnosed with PSC and the doctors couldn’t tell him much other than his liver is failing and that he’s had it for about probably 2 decades. They can’t even give a prognosis. He is very fatigued and is struggling with severe jaundice. Does anyone know what this could mean?