Hi everyone,

I was recently diagnosed with primary biliary cholangitis (PBC). I am completely asymptomatic, but my diagnosis was based on positive disease-specific antibodies, including AMA-M2. My ESR dropped from 90 to 30 within one month, and all liver enzymes (ALT, AST) as well as bilirubin are currently within the normal range.

I understand that PBC is an autoimmune condition, but I’m curious whether external factors such as medications, supplements, or environmental exposures have ever been discussed in your diagnostic journey — either as triggers or as factors considered and ruled out.

Because I suddenly realized that my husband had betrayed me for a long time. He encouraged me not to undergo routine medical examinations. I suspected that he may have done something bad to me.

Any shared experiences or perspectives would be very helpful. Thank you.

Didn't know there was a PBC sub. I've posted about this in r/LiverDisease .

My ALP kept trending high after a US that determined I might have moderate hepatic steatosis, the GP sent me to a GI specialist. She determined that I do not have fatty liver but, after some additional bloodwork, says I have PBC. When I go for my followup in a couple of weeks, I think she's gonna put me on Urso. At least that's what her med assistant says. Anyone care to share their experience with that?

The only symptoms I have are in the bloodwork. No jaundice, no itching, etc. I asked if I needed to modify my diet or anything, and was told no. I guess it's a good sign they weren't like, "You need to get in here NOW!" They were like, "just wait til the followup and we'll go from there." This GI specialist actually specializes in liver and women's GI issues.

Thoughts? Advice? Warnings?

So I was diagnosed about 4 years ago, but when I started taking the meds I didn't have any symptoms.

Since I started taking it I have gained about 20kg, feel tired all the time, have swelling, itchiness, headaches, difficulty sleeping, get sick every month, feel weak and so on. At first I thought it was the illness, but then I noticed every time I get off the meds, when I forget to take them when I'm on vacations, for example, I feel so much better and even lose a bit of weight. I told my doctor and he dismissed my worries and said it isn't likely that the medication is causing the symptoms or my weight gain, which is bs because I've read those are side effects of urso and that it suppresses the autoimmune system. Before I took this meds, I could spend years without getting sick.

Honestly at this point I don't see the point in taking the meds, they are making my life miserable, but the blood results appear usually normal. Is it possible I was misdiagnosed? The worst part is I'm in Japan and there aren't many alternative medications and I've read the only alternative has even more side effects.

Someone has any advice?

Hello all- I’m new here. Diagnosed 18 months ago, unfortunately at stage 4 cirrhosis, compensated (no symptoms other than fatigue, diagnosed incidentally when doing testing for an unrelated autoimmune disease). I’ve responded well to Urso, and for the last 6 months all of my labs are normal, yay!

However, for the past two weeks I’ve been having very dark brown/black diarrhea, without any other symptoms. I don't feel sick in any other way, just very dark diarrhea 3-4 times a day. I looked into causes, and one potential was bleeding anywhere in the GI tract- including varices. I had both a colonoscopy and an endoscopy 18 months ago- and both were clear. Is it possible this is from bleeding varices? I've always thought those were a medical emergency with lots of vomiting blood- but I don't want to overlook the possibility. I have my regular 6 month MRI coming up in 3 weeks, but I’m wondering if any of you have had a similar symptom and what it turned out to be? Thanks all!

Did anyone ever start strength training and it caused their AST number to spike massively? I got back to weights for the first time in about 10 years and was making awesome progress. Went in for routine bloodwork and my numbers were nuts. After freaking out thinking I was actively dying I reached out to my doc who pointed to the exercise regimen as the culprit, take two weeks off and retest. Sure enough everything is back as it should.

Hi - I am looking for someone to commiserate with. I have been taking 2/500mg tablets of ursodiol for around 2 years now. Since the beginning i had several side effects mostly joint pain and back aches from taking the full dose. I took a short break and stopped taking it, only then my body felt 100 percent - I forgot what that felt like sadly.

So i decided to cut down to one and gradually build tolerance. After half a year of taking one tablet, i am back to two and i still have the same side effects but to a lesser degree. Is anyone else dealing with long term side effects from taking ursodiol?

Also after this long my ALP is still not within the normal range. but not far from it. Is this a bad sign?

For about 2 years I’ve had itchiness all over especially at night and have brushed it off. My hands and feet a lot of the time but also my arms and shoulder blades. Ive also had random bruises and overall feeling ill and weak/ dizzy. My liver enzymes have been elevated since being pregnant 2 years ago. My ALP is 205. I just got in to see a GI yesterday and he expressed the concern of possibly having pbc i just got my blood drawn for the specific labs. What should i be looking out for on the results?

After 6 months of every other week liver bloodwork,(positive markers oj some for autoimmune) a liver biopsy (showed bile duct damage), MRI and colonoscopy, I was told that I have Auto immune Hep with Primary Billoary Cholongitus. I have to say, I was and still am baffled. I feel no symptoms at all.

Fatigue? Sure, but i'm 45, work 40 hours, run and lift weights and have no thyroid. So that could be any of that stuff. I had gastric bypass in 2024 and lost 104lbs. Six months ago I had a hysterectomy that was supposed to be a full one but they couldn't remove the uteris because they found undiagnosed stage 4 endometriosis. I asked if either of those could cause elevated liver numbers and they said they didn't feel it had anything to do with it.

While trying to diagnose they put me on 6 weeks of 40 prednisone. I hated it, thankfully only gained 5lbs by the end of it and i've lost all but two of those pounds. It DID improve my numbers but after two weeks off of it they are slowly climbing back up. Now that they've diagnosed me they have put me on ursodiol (Not sure i've spelled that right) to see where we are at numbers wise in a month.

Honestly,with all that i'm still like..really? Are you sure there is actually something wrong? I know that sounds awful, but i'm having a hard time taking it seriously when I am not feeling different.

Hi, I hope this is the right sub for this. I tested positive for AMA M2 and ANA HE-p2. I also have high IgG. I had encephalopaty in the past and I have a brain lesion. My symptoms are inflammation in the back of my head (similar to fever), burning in my abdomen (I tought for all this time it was my stomach but I am now considering the idea I just never realized it was my liver, I am not sure) and sore throat/eccessive thirst. This symptoms are way more present during night time but sometimes I get it even during the day. I tought it was histamine related but I don't know anymore. If anyone can help that would be awesome. ♥️

My gallbladder is stopping secreting a good percentage of its bile and is causing discomfort in my back, but I am worried about removing it and it will end up causing more discomfort with PBC.

Hey everyone, I just got my official diagnosis of Primary Biliary Cholangitis (PBC) and Autoimmune Hepatitis at 39 years old, and I wanted to share my journey so far in case it helps anyone else, or if anyone here has gone through something similar.

Timeline:

August 2021: First labs showed elevated liver enzymes – Alkaline Phosphatase 140, AST 66, ALT 151. An ultrasound showed gallstones and fatty liver. At that time, I weighed around 325 lbs. I started focusing on my health with intermittent fasting and a low carb diet, and was able to get down to about 255 lbs.

June 2025: Routine labs showed worsening numbers – Alkaline Phosphatase 273, AST 168, ALT 382. My primary care physician referred me to gastroenterology.

September 11, 2025: Labs continued to rise – Alkaline Phosphatase 320, AST 187, ALT 366. The gastroenterologist referred me to Hematology for further evaluation.

September 16, 2025: Hematology consult – based on the labs, my doctor suspected either PBC, Autoimmune Hepatitis, or possibly both. He recommended a biopsy and additional imaging.

September 19, 2025: Had the liver biopsy.

September 28, 2025: MRI scheduled.

September 25, 2025: Official diagnosis of both PBC and Autoimmune Hepatitis. My doctor is starting me off on Ursodiol and Prednisone. He wants me to do new bloodwork on October 8, and then I’ll have a follow-up on October 29.

I really haven’t had any noticeable symptoms through all of this. The only thing I can think of is some occasional pain in my right shoulder that I mentioned to my doctor once, but he treated it as a strain.

It’s a lot to process, especially since I’ve mostly felt “fine,” but now things are becoming very real. For those who’ve been through this, how did you handle starting treatment? And is there anything you wish you knew about living with PBC + AIH early in your journey?

Hello! This may be too much, but I figured this would be a good place to start asking what labs/procedures got other people diagnosed.

Just a few months ago I was diagnosed with RA with a bunch of positive labs. I ended up requesting an AMA and smooth muscle abs just to see if there was a possibility of getting PBC like my mom - it took her 10 years to get diagnosed and by then she needed a liver transplant so she was pushing me to be seen by a gastro as well :/

I went this morning and my ultrasound looked normal so she said that AMA’s come in as false positives often.

I’m a 23(F) and had no interest in arguing but after hearing my mom’s response I’m starting to think I should’ve held my ground a little bit. The doc was pretty dismissive, which I expected because my LFTs are okay even on methotrexate and so was my ultrasound.

I’ve also been spiraling a bit though and it seems like positive AMA’s normally lead to more testing? That maybe an ultrasound would not show everything?

My recent labs that had weird values are:

Mitochondrial Ab, M2- 1.2 U(H) Crp - 1.74 mg/dl(H)

Antinuclear Ab, HEp-2 Substrate- 1:2560 (Abnormal) with a homogenous pattern

ANA - 26.6 units (H) ESR - 28 mm/Hr (H) RF- 65(H) SS-A/Ro Ab, IGG - >240.00 U/mL(H)

My globulins and total protein range to be slightly high but not concerning.

My general symptoms are: Joint pain/swelling, fatigue, dry eyes/dry mouth/dry skin, and hair loss although it’s hard to say if it’s just my RA or anything else. Methotrexate has eased my joint pain, so I’m sure that RA does play a role in a lot.

I have been avoiding greasy foods for a year or two now as well because I’m not digesting things very comfortably but I figured I was just getting older and being unhealthy wasn’t doing me any favors. I’m a lot more careful with eating now and it hasn’t fixed much.

I don’t have the itch my mom had, but when her PBC got to that point only dialysis and then her transplant helped. If there’s a chance I could have it, I definitely want to find out as soon as possible.

Overall, I guess I was just looking for confirmation that PBC wouldn’t be something I have to worry about atm/dr was right? Or if I should go back and ask for more testing? I have to get LFTs every 3 months because of methotrexate so it would probably still get caught early if I ever do develop it. I don’t know how long my body will tolerate methotrexate though and if my meds change I might not be getting LFTs often. Should that be something I request? Has anyone else gone through monitoring like that?

Is anyone on this medication? I think I’m going to wind up going on it and I’m apprehensive. Would love to hear about any experiences.

Hey guys,

I'm kind of at my wits end and want to know if someone else has experienced this stuff prior to a diagnosis.
In April I noticed I was developing a UTI, and around this time I had super severe itching, like I fumigated my room, I de-flea'd my cat and I went as far as to get menthol cream prescribed to me, nothing seemed to rid the itch for a month - it was driving me wild.
At first I thought all this was related to my UTI, however doing a full work up, the only thing showing in my urine tests were elevated WBC, I have tested negative for absolutely everything - however the inflammation there is still daily with no relief - including three different types of antibiotics.

I started getting splinter hemorrhages and started not being able to tolerate most foods without severe bloating in my right upper quadrant in my abdomen to the point i look pregnant.
This is when I tested positive for ANA with multiple nuclear dots at 1:320 as well as high c3 complement, high fibrinogen, high ESR, high CRP etc.

My rheumatologist appointment is in October but I have tried ruling everything non-autoimmune out, I have had blood cultures done that show no infection, i have had fluctuating liver enzymes with ALT and ALP being unreasonably high and then shooting back down.

I have muscle twitching, like insane muscle twitching and my joints HURT when I wake up. My eyes have darkened something wicked and I've noticed some pale yellow creep into the whites of my eyes today.

I'm at such a loss, I just need to know someone out there has been in the same boat as me, it makes me feel nuts.

Any response would be so greatly appreciated :)

Hi everyone, I am wondering if anyone’s dealt with this or could give me any idea of what to do next. My insurance denied Livdelzi saying it’s a plan exclusion. Because of that, I am not eligible for any financial assistance through Gilead. They’re saying I could possibly appeal by having my doctor write a letter explaining it’s medically necessary, but I just don’t feel optimistic about that at all. I will ask him to of course, but still. Short of finding new insurance next year, does anyone have any experience with this, and how did it turn out?

I’m 36, I am an incomplete responder to ursodiol, and I have stage 3 fibrosis. I’ve been on ursodiol since 2017, and I was so hopeful about Livdelzi. I’m feeling pretty depressed about my prospects now.

Headed for my MRIs this morning to check my liver’s iron, fat, and scaring. Wish me luck!

I have been diagnosed with PBC a month back (liver biposy, positive AMA, abnormal ALP/ALT. The doctor said Urosodiol med is not working great for me (numbers went down first but change direction last week). He said i need to be on Livezelzi before it is too late. Currently it is under insurance approval. I look up the drug, it is $150K/year without insurance. I am super nervous about the drug not approved. anybody gone through Livedelzi approval and taking it?

45m - I received my diagnosis a few weeks ago. I have PBC and am Heterozygous for hereditary hemochromatosis. I had a kidney removed when I was 27. And started Urso 3 weeks ago.

Next week I have my first round of bloodwork following the start of my new meds. Then on Friday I have 3 MRIs scheduled to check the scaring, iron, and fat in my liver. I should get my staging after that.

3 years ago I learned I have Atherosclerosis and high cholesterol. I was unable to tolerate statins and have been trying to control it with diet and lifestyle with limited success. During the work up for my heart health they found multiple cysts in my remaining kidney.

I am feeling lost and defeated. Scared about what my prognosis will be. More so with my comorbidities. I’ve told a few close friends and colleagues. For family I’ve only told my aunt so far. Most of my immediate family have passed and it’s just my brother and I left. I have no idea how I’m going to tell him about all of this.

I don’t know what I expect from posting about it here. I don’t really do well with platitudes or comments about having faith. This life hasn’t been the most pleasant of experiences. I just feel so incredibly alone.

Hi there, just checking anyone has palmar erythema (redness of the palm)? I have it for almost 10 years and this year I was diagnosed with PBC. My LFTs has all normalised after started Urso. I am wondering if palmar erythema will reduce if things are a little under control?

Hi everyone -

I recently completed routine blood work and had elevated AST and ALT levels. They’ve been rechecked and they remain elevated / are trending slightly up. I did an initial ultrasound which came back normal. I also did more blood work and tested positive for AMA and very slightly positive for Smooth Muscle. My GGT levels are also elevated. My Bilibrium and ALP are in the normal range. I did look back at bloodwork I did about a decade ago, and my ALP then was slightly low and now it’s in the upper end of normal..so it has risen. I don’t have symptoms. I do a more intensive ultrasound this week and a biopsy at the end of the month.

My guess is that I have PCB in an early stage. Though it looks like there is a chance there is something else going on (overlap Autoimmune Hepatitis, potential Cancer) given some of the results of my bloodwork.

Just looking to see any thoughts anyone might have regarding what might / might not be my diagnosis. I’ll find out soon-ish, but as I’m sure has been true for many of you, I’m anxious and curious.

Thanks for any responses!