Hi! I’m getting my very first ERCP in early December, and I’m wondering if people have stories, advice, or things they wish they knew in advance before their ERCP(s)? I’m open to hearing anything!

I got an infection in late August and am still feeling pretty shitty despite having cleared the infection itself. Major knee pain and general malaise are still persisting, and was just looking for something hopeful to hold on to!

Hi all - I appreciate reading everyone’s experiences so I wanted to post my own to get some thoughts.

I (29M) was diagnosed in June of this after getting yearly bloodwork for UC and having elevated Alk Phos, AST and ALT. Scans revealed a clear diagnosis of PSC.

I had a cholangitis attack in late July and had my first ERCP while I was in the hospital, and had my second ERCP at the end of the September which resulted in the removal of a blockage. After that ERCP, the endoscopist noted that the smaller left lobe of my liver is not in very good shape, but the larger right lobe is not too bad. The endoscopist even said I would not be getting a liver transplant with my liver in this condition. But nonetheless, a diagnosis of cirrhosis has been confirmed by every doctor who has looked at scans of my liver, and the primary hepatologist Im seeing had me go through the transplant evaluation process. I’ll also note that I had grade 3 varices in my esophagus that have been banded.

From my bloodwork during the evaluation, I had a MELD of just 7 (the highest it’s ever been was 10)! Crazy low and seemingly indicates that my liver function is as normal as a healthy person despite the cirrhosis. My bilirubin is only 1.3 and I have no itching or jaundice. INR and creatinine or also both in the normal range. My ALT and AST, however, are both 4x high, and my Alk Phos is 800+.

The transplant surgeon I saw said he thinks my case is borderline for being listed given the cirrhosis, portal hypertension and potential for cancer deeper in the bile ducts, but it’s weird to hear that given the fact that my MELD is so low and I physically feel fine. The hepatologist who suggested I go through with the evaluations seems to think I will get listed, last I talked to him. On the one I don’t want to be listed because it would be great to be told I’m healthy enough to not need one, but on the other hand, since PSC is not going anywhere and there already some concerning signs, I don’t want things to linger too long. I guess I’m just looking for some perspective regarding what to make of these symptoms and hear other people’s experiences with the transplant process, especially if you went through evaluations and weren’t listed. Many thanks

I'm in nearing the final evaluation stages as a living donor for my father, who has PSC and now cirrhosis. If there is anyone in this group who has done this, or knows someone who has that would be willing to chat about it, I would love to hear about the experience.

Just looking for shared experiences not advice- has anyone had PSC mainly in their bile ducts ? I had a recent appointment with my doctor and although healthy my bile ducts aren’t doing well and my jaundice is extremely concerning my consultant is now in talks with the transplant specialist hospital for me to do my assessment to get out on the list. I’ve had numerous repeat infections, jaundice (severe) I still have it and also lots of other symptoms weight loss, malnutrition, pain. Just hoping to find out if anyone has had a liver transplant got the same or similar reasons?

So I was initially diagnosed in 7/2019. I didn't really follow up because I was kicked off disability and went to working full time right after diagnosis. Covid happened, I had a family, and I am finally here. The specialist I saw painted a pretty grim picture, despite my alkaline phosphatase being 148 when last checked about 6 months ago. It has never been above 350 while monitored. She specifically stated, even with drastic lifestyle changes, the only real relief is a liver transplant. Is this true? Where can I find reliable information to help me on a proper path? As in, is there anything I can do to help my PSC not progress or help my chances at least?

My backstory. I was diagnosed with UC in 2005. I had my colon removed in 2019. I have an ileostomy that is permanent. I also saw a drop in my numbers upon total removal of my rectum or maybe it is my use of energy drinks for my former business. In short, I feel pretty good but may have some fatigue...though with using sleep apnea and just life, being tired is always a thing---two toddlers and I am 42. I rarely drink if ever and never smoked short of some experimenting in my 20s

I get that this is a ticking time bomb for all diagnosed with it. I get that I might do everything right and still not do well. I just want to give myself the best chance, you know? It sounds like that might mean looking for a doctor that specializes in PSC, no? Please, any time and help appreciated.

Heya,

Just wondering if any of you have ever had cholangitis (or something) that was just suuper low grade, didn't cause huge amounts of the obvious symptoms, but you just feel generally crappy for an extended period of time.

I've been dealing with increased tiredness for a couple weeks now, 2 or 3 nights of minorly elevated temperatures, and general mild aches and pains. I've not had any directly obvious symptoms such as actual liver pains, major fevers, obvious jaundice, etc. In addition, my blood test from last week was pretty much the same as all my others. I just feel.....uggh.

I'm debating whether to break out the Cipro, but also avoiding cause it makes me feel super gross. I've reached out to my specialist, but she's off on conference leave until next week.

Good information on the differences between PBC and PSC. Important to ensure an accurate diagnosis with a hepatologist if your fortunate enough to be near one. I remember wishing for PBC before we realized all the treatments used weren't working, such as Ursodil. Had to go through additional testing and after 2 years it was confirmed PSC.

https://pscpartners.org/patients-caregivers/education/psc-pbc.html

I’ve seen ads for Dose and Symbi drinks etc. Anyone tried and do they help?

What helps get better blood work?

iam 26 years old i was diagnosed with PSC 4 years ago iam I have severe anxiety about this disease Are there people who have been diagnosed for years without a transplant or problems?

Had a liver biopsy two days ago. I'm still under investigation so I haven't got a formal diagnosis yet.

I must say the liver biopsy wasn't that bad at all. No sedation, just local anaesthetic. I don't think the pain was too bad, and now I'm just feeling a little bit sore but definitely manageable.

One thing that got me a bit confused though. She wanted me to practice on my breathing first, being able to stop at her cue. We did it a couple of times, but when she actually did the biopsy she never told me to stop breathing. Did she forget? Or maybe thought it wasn't necessary for whatever reason? Anyway, I guess if something went wrong I should have noticed it by now.

The doctor is scheduled to call me back in five weeks, so the worst part now is waiting. It's been three months already since they discovered my elevated liver enzymes and the uncertainty of what's wrong with me is quite tough to go through, as I'm sure you all know.

Hello,

Given the theory that PSC/UC are related to, or caused by, GI issues, I have a question:

Does anyone with PSC/UC/IBD have any experience with taking the lactoferrin supplement?

Thanks in advance.

Diagnosed PSC in 2017, currently on transplant list. Got a call but the liver ended up not being viable. Been getting infections routinely so I have a picc line and taking antibiotics until post transplant. Possibly due to the clot in my portal vein. Nice to see this reddit group!

I just had a phone call with my doctor, and now I'm confused.

Many moons ago, my liver values were elevated, but they returned to normal by themselves. Two years later, they went up again, and I was diagnosed with PSC, put on ursofalk, and the ALP and ALAT quickly stabilised. Since then, I have done several MRI and one liver biopsy. The MRI noted slightly enlarged ducts, while the biopsy showed maybesome mild inflammation in something I have forgotten, but nothing clear, possibly nothing.

Two weeks ago, I did a blood test after experiencing my first pain in the liver area (and on the left side as well). The result was not good, the ALP and ALAT were at a new personal high, and I immediately started with Ursofalk again after having taken a break during my pregnancy.

Yesterday, I had another blood test, and the ALP is down to half of what it was two weeks ago, ALAT is within the normal range. The pain has subsidised, and I'm not quite as ridiculously tired.

Thing is, as we all know, PSC isn't a great disease, and it feels a bit heavy to wait for things to get worse. A doctor friend of mine told me about an ongoing study, where the effect of statins are tested. The preliminary results were really interesting, and since it is a well known medication with a huge potential upside and a very small downside, I wanted to see if this would be an option for me.

Apparently not? Apparently, the lack of findings from the MRI and biopsy casts doubts on my diagnosis. My doctor also said that most of her PSC patients don't show much, if any, improvement with ursofalk, and eventually stop taking it, whereas I respond really well to it. She said that there are other diseases, like PBC, but they have been able to rule that out when they tested me for its markers.

She said many more things, but the thing that is stuck in my head is that I might not have PSC. There's clearly something with the ducts, but what is it? They don't know. I certainly don't know. They used to think it was PSC, so I thought so too and I've been going back and forth between denial and sad acceptance, but now... They are not so sure, and I don't know what to think.

Nobody wants PSC, so I should be relieved, but I also can't quite believe it. It feels like another round of denial. Like, can it really be true? Something is going on with the ducts, but maybe, maybe it's not an inflammation? But what could it be otherwise? My head is spinning and I don't know what to think.

https://today.ucsd.edu/story/scientists-discover-a-new-signaling-pathway-and-design-a-novel-drug-for-liver-fibrosis

After discovering the signaling pathway, the scientists designed a short piece of RNA to prove the pathway behaved the way they thought it did. This RNA, called an antisense oligonucleotide (ASO), was so effective that it not only proved the viability of the pathway but also prevented liver fibrosis — too much collagen in the liver — without causing any side effects. The scientists are currently discussing licensing the ASO as a therapeutic with various pharmaceutical and biotech companies.

Olefsky and his team identified a much less common disease called primary sclerosing cholangitis, or PSC. It's relatively rare, often fatal, and until now there were no good treatments.  When the scientists tested their ASO on a mouse model of PSC, they found that their ASO almost completely blocked the development of the disease. “Getting FDA approval for PSC would be easier than getting it for MASH,” said Olefsky, “so we’re currently talking to biotech and pharma partners about licensing the ASO for PSC.” 

Can we get a hotline to these people?

Im currently in a phase where i don’t have working meds for my UC, im currently on prednisone and have been for 2 months but recently i got my bloodwork back and my GAMMA-GT was 950 and the rest were elevated 4~9x their normal values.

My calprotectine was 2300 aswell.

The doctors suggested me RINVOQ but i did not want to take it due to the side effects i saw.

Now they will put me on another JAK med.

Does anyone have negative experiences with JAK medication, and has someone had high liver values in their blood, im also taking ursochol for my liver. If anyone has tips on how to improve my liver please let me know because im quite sick because of it lots of pain and throwing up

Hey Everyone,

Recently diagnosed.

Wondering what percentage of people diagnosed with PSC eventually need a transplant? Do we have reliable data on that?

I understand that there are other health complications as well, and don’t mean to minimize. Just knowing that the internet can often be full of some of the hardest and more intense outcomes, I am trying to get a sense for how things plan out across averages.

Hello. I have my second ERCP for stent placements coming up on Wednesday. I’m incredibly nervous since last time I had this done I developed severe pancreatitis and was hospitalized for a week after.

Posting for some positive vibes and encouragement!

Hi Everyone, I was diagnosed with PSC + UC 3 years ago. Been doing well then turn jaundice this January and had my first ERCP. I felt amazing after my ERCP however I recently had another cholangitis attack, Horrible Upper Chest pain, slightly jaundice eyes, pale stools, dark urine etc. I went to A&E and the only prescribed me Painkillers, they had mentioned that my bile duct and gotten worse however they let me go home.

It's been a week since I gotten ill and I'm still experiencing slightly jaundice eyes, dark urine and pale stool. Is this common to still have some lasting symptoms and how long did it take for your symptoms to go?

Hey Everyone,

I’ve recently been diagnosed with PSC (Primary Sclerosing Cholangitis) in Vancouver, Canada, and I’m hoping to hear from others who have experience with this condition.

Seven years ago, I went to the hospital with abdominal pain. My liver enzymes were elevated (ALT, ALP, GGT all in the 100’s), but the doctors didn’t follow up with any further tests. They said I was healthy, so I didn’t think much of it. Since then, I’ve had that same pain 2-3 more times, along with some mild digestive discomfort.

This summer, I had another painful episode, which led to more tests. An MRI and follow-up with a gastroenterologist confirmed PSC. The doctor was cautious about telling me the name of the condition, even warning me not to look it up right away to avoid getting too scared.

I’ve since had a colonoscopy that ruled out UC or IBD (though I do have hemorrhoids). It still doesn’t fully explain my digestive issues, so I’m not sure if they’re connected or just separate.

For now, my gastroenterologist is advising me to monitor things with blood work every six months, an MRI every year, and a colonoscopy every two years. He’s also recommending that I focus on maintaining good overall health—keeping my weight in check, avoiding alcohol, etc. (I don’t drink or do drugs, so I guess that’s something I don’t have to change.)

Currently, I’m living abroad in Germany for a few months, and it could be longer. I’m trying to figure out how to proceed. I’ve read about treatments, specialty clinics, and doctors that others with PSC have sought out. I’m aware that I’m in the early stages and that my liver is still healthy for now.

From what I’ve gathered, not everyone’s condition progresses to the point of needing a transplant or developing complications, though there’s no way to know what my trajectory will be.

So I wanted to reach out to the community here because, honestly, my mental health has taken a hit since the diagnosis.

What would you do if you were in my position? What wouldn’t you do? What questions should I be asking my doctors? What are the important next steps?

I run my own business and had plans to work in various cities around the world. Now I’m wondering if frequent travel and being away from specialists could pose a risk with PSC. Should I push for treatments now, or is it better to wait and monitor my condition to get a better sense of progression?

I know some of you have faced far tougher challenges with this disease. I really appreciate your generosity in sharing your stories. Apologies if my questions seem naive—this is all still very new to me, and I’m trying to learn as much as I can.

Thanks for any advice you can offer.

I was diagnosed with PSC and Crohn's in spring of 2023. Had AIH for the last 12 years. Gallbladder removed in 2022. Currently on Imuran and Entyvio.

Over the last few months I've had consistent symptoms. Night sweats, hemorrhoids, blood in BM (usually just on tp), weight loss, random/infrequent but mild abdominal pain.

Lab work, MRI, MRCP, CT scan, colonoscopy with biopsy,etc etc. No strictures on any imaging, no elevated enzymes in labs, no inflammation on biopsy or colonoscopy, nothing. Weeks of multiple scams and appts for the last few months and nothing is showing up. I'm kinda feeling better right now but weight is still not improving, but not declining. Almost like I'm getting better so they can't figure it out, but I'm not getting better.

My GI and Hep are working together. I'm very happy with their attentiveness and willingness to keep looking but it's rough not getting answers.

Anyone had something similar and have ideas of where to look or other tests to ask for?

First off hello everyone, first post on here. I'm 35m and have been dealing with this for about a decade. PSC sucks but I've been completely blessed and have had minimal complications over the past few years, just discomfort here and there and maybe some mild depression at times, as looking at the abyss does that. I start this post knowing this is probably taboo and I'm not trying to be political in any way shape or form. With that out of the way, I'm starring at a transplant probably very soon "hopefully". I go to Mayo next week for my evaluation. I'm terrified mind you. Currently I'm not feeling terrible, but I'm to the point where I'm anemic and my hands are getting tingly, probably due to my swollen spleen. I've been dropping weight which is no bueno too. Things are starting to happen fast...However, I am not up to date on my vaccinations. But that particular one worries me. There's over a handful of people I know personally that have had terrible side effects and a couple who are constantly sick with the vid, fully vaccinated mind you, and not terribly old. What are the chances of me not having to get it? I have already had it twice and it was a mild but no big deal. I also have a history of heart disease on both sides of the family. Do you think I will be denied or delayed due to not wanting to go down the jab road? Thanks for the replies and understanding all.

I’ve been admitted frequently with infections they have finally got a hold of it now with antibiotics which I need to take a 6 week course but I’m just wondering how do you all cope with that daunting feeling when being discharged and then feeling kind of lost and hoping and praying you don’t have to come back 😭😭 I’m so scared right now I don’t want to have to come back here it’s so lonely and horrible.

How long after diagnosis, and how high were your ALP and ALAT when the pain started? Did it go away when/if your liver values normalised?

For context, I stopped Ursofalk during my pregnancy. Had the baby in March, and in June, my test results were still good despite not taking any medication. Started feeling increasingly fatigued, then some pain about two weeks ago, hoped it was just.. Random pain. Food related maybe, I don't know. Did a blood test today, and the result is not great. Will start with Ursofalk again tonight, but I'm afraid it's about to go downhill from here on.

I've started exercising more recently and have been taking whey protein with almond milk. Does anyone know if whey protein is damaging to the liver?

My partner was diagnosed with psc at 14, he did not need a transplant until he was 28.

He lived 5 years without any problems before psc made its ugly return.

Since then he has had PTLD (cancer from transplant), same time psc has come back ten fold.

It's now going towards a 2nd transplant 7 months after finishing chemo but it seems chemo has destroyed whatever is left of his immune system and so his getting any old infection every other week ontop of colangitis.

The aim is to get him to 2025 before having a transplant to ensure the effects of chemo go.

Has anyone had any similar circumstances? Any advice? We both feel very in the dark

I'm finding it hard to find stories of people who have been diagnosed with PSC after colon cancer. Most of my BASIC-level searches to date usually mention cancer as a future concern, so I feel like a bit of an outlier right now.

Anyone else out there with a similar trifecta have a story to share with a newbie? My trifecta is a little more than three diagnoses at this point: UC, colon cancer, then Crohn's after j-pouch surgery, and now PSC.

Just got the call, that i will probably have tomorrow my first liver transplantation.

its been arround ~12 Years since diagnosis of PSC but i had it probably already since 17 years but its hard to pinpoint it earl stage with many unrelated symptoms.

My Meld score is only 15 but i have hefty itching, zirhosis, yellow skin/eyes, some flare up, cant sleep normal, random fevers, sometimes nosebleeds, already small veins going arround the liver and showing up in esophagus, sweating attacks.

tomorrow i will get another call if the organ is healthy and ready to be transplanted.

i hope for a good recovery and will update this post after i am out of ICU.

i hope i will be able to update this post 🫶

Edit1: i just wanted to say thank you to this PSC sub and all members. I was here reading and sometimes writing (with another Account) since my diagnosis. This sub always helped me to have a somewhat healthy opinion towards PSC and that the diagnosis will not be instantly the end.

Also to see that other people can live with it.

And i am also amazed that so many poeple replied so fast, when its usually really silent here.

And to all new diagnosed ones, its not that bad as it sounds, for me the diagnosis hit me more than to hear i will need a transplantation. In between ihad some years without any symptoms, and some years with weeks long hospital stays. Depending on your progressione, which can be very slow or fast of be slow for 10 years and fast for 1,2 years, you can still finish your school, learn a job, have a family. Dont give up. 🙂

My specialist is 90% certain I have this, evolved from autoimmune hepatitis and will do a biopsy next year to confirm.

I have IBD and had my bowel removed. This led to a huge improvement in my LFT's and Gamma GT scores.

My question is, how bad is this disease? I already have a number of autoimmune diseases and fibromyalgia, what can I expect if I have this too? I googled for 2 minutes, got freaked out and decided to ask actual people as opposed to medical journals I cannot understand and fear mongering!

Thanks all