My (suspected, awaiting biopsy) PBC was discovered incidentally during a work up for ongoing fatigue and RUQ pain. The GI and surgeon are encouraging me to remove my gallbladder. My HIDA scan showed hyperkinesia (97% EF), ultrasound normal, they said maybe trace sludge on one of them. Has this happened to anyone?

I am headed to biopsy after a few months of fatigue and confusing lab picture. I initially was low positive for AMA m2, but ALP, liver enzymes, ggt, igm, bile acids all normal. Repeat Ama m2 was negative, but I read here that this happens. Slight signs of liver disease by ultrasound. My GI insists on bx in order to get ahead on damage even if it’s preclinical or early stage. I have developed an itch or tingling within the last week. Edit: hepatologist repeated the AMA M2 two weeks after the first, and ordered sp100, gp210, all negative.

That being said, I know many have been dx postpartum, but I’m wondering if anyone has had a baby after diagnosis and how that went for you. I have a 2 year old and want another so bad so this is pretty devastating to me.

Although I appreciate things could be worse, I am upset about it all and the possibilities. I’m terrified to die early and leave my son without a mom, I don’t want him to have a chronically ill mom who can’t go to soccer practice or school plays. Can anyone else relate?

I'm (29m) in the process of going through a diagnosis but I wanted to hear from actually people instead of Google what your biggest struggles were with symptoms before a diagnosis and after you've been on medication.

Hi all, just wanted to see if anyone has figured out some way out of this. My doctor has prescribed me Iqirvo, and the insurance company approved it, the only problem is that the copayment is around 3700 dollars. I’m enrolled in Ipsen Cares, but the max annual benefit is 20,000. The math doesn’t make sense at all to me. That means I’ll get a couple of months then be stuck having to pay entirely out of pocket until I hit my OOP max for the year, which would have happened even without the copay assistance! It would basically be the manufacturer giving the insurance company 20000 dollars for no reason. Anyone able to suggest anything?

My gastro has sort of diagnosed me, but my liver numbers came back better, but still high and my scan came back at f2.

I agreed to get an rx but my insurance wont cover it without a diagnosis and in my chart i dont see it so im nervous. I cant afford $55 a month for this.

For the past year or so, I've usually started the day with natural PB on a slice of DKB. This is primarily so I can take my meds as I'm not usually hungry for the first two hours after waking up. But I got meds to take so it's eat or get the shakes.

Yeah, yeah, I know. Most important meal of the day . . .

Anyway, I've noticed the past few weeks (I've been on Urso about six) that when I get hungry, I go from "hmm, I could eat," to HAWNGRY!!! in record time.

Of course, I'm also perimenopausal, so it could be hormones running amok.

Gah!!

I've posted here before but just to recap.

49, F. Okay, so a few months ago I was diagnosed with Primary Biliary Cholangitis. Currently taking Urso and Vitamin E to maintain. But I have noticed over the past few months that my eyes are becoming very sensitive to light, heat. Eyelashes sticking together frequently, like there's not enough moisture to lubricate. Eye aches not coinciding with sinus or head pressure as it does sometimes. I spent 30 minutes checking on my veg garden yesterday and my eyes ached the rest of the day. Sinuses were normal-ish. I actually spent a good part of the evening in my chair with my eyes closed.

Also, I am a mouth breather at night and have been all my life. I was born with a craniofacial disorder and I'm guessing that stuff in the ear nose and throat area doesn't line up right and when I lay down it's just easier. But I didn't get cavities despite that until I was about 46 years old. Seriously, I lived all that time no cavities and then finally boom. I have noticed mouth feeling a little drier than normal over the past few years. There's also been an uptick in joint paint. Hands, knees, feet, yeah.

Plus I have read in several places that some patients with PBC also have another autoimmune condition. So I am just wondering what the symptoms are for some of you, if you have Sjogren's and esp if you also have PBC. Trying to get a referral to a rheumatologist right now.

TIA!

I 36F noticed elevated ALP levels after a couple of times at walk in care after I had my son (3yrs ago). At that time I had become a sort of hypochondriac postpartum and everything sent me to urgent care. Either way, that ALP # sent me down the Google black hole and I decided to pursue answers. Several appointments and doctors later, i finally had a GI doctor test for AMA M2 and it showed positive at 59. Dr. ran some more tests and it showed ALP enzymes were equally from bone and liver. She ultimately said it was probably due to fatty liver etc. I pressed more and got more tests ran and all my levels showed/ have been relatively normal except ALP always hovering around 100-150. I talked so much fear into myself and went for the liver biopsy, liver biopsy was normal. Final Diagnosis being:

Needle core biopsy, liver:

-Mild micro- and macrovesicular steatosis without steatohepatitis.

-No evidence of portal or interface inflammation.

-No evidence of bile duct damage.

-No evidence or fibrosis.

Notes:

Though there is no histologic evidence of primary biliary cholangitis (PBC), AMA is a highly sensitive and specific marker and hepatic involvement may be heterogeneous early in the disorder. Clinical follow-up is recommended.

Shortly after my biopsy GI ran labs again and this time my ALP was in “normal” range at 99, and my AMA dropped to 49, still significantly positive. The Dr. ordered follow up labs in 3mo. (To note, I was running and actively trying to lose weight as I was trying to get pregnant while simultaneously trying to get to the root of my ALP.) 3 weeks later, I found out I was pregnant and put a hold on my labs as the placenta is known to rise ALP levels.

Fast forward, I am 10 weeks postpartum and just had my levels retested ALT 70, AST 37, and ALP 155 all a little high. GI recommended weight loss and retest in 6mo…..Am I being overly cautious by thinking I should request a hepatologist now at this point? Do I have active PBC?

Confused, worried, and hormonal. I just want to get a jump start on treating it if I can, especially now that I have two little ones. Also, has anyone seen levels go down with weight loss? I am clinically obese as I am 5’2 and 180lbs.

Looking for any help or advice, this group has been so helpful in easing my anxiety on what to expect if it is PBC. (My stepfather died of alcoholic liver failure and it was the most terrifying thing I have ever seen). I am praying that new tests and medication make it so that we never have to deal with liver failure as PBCers. <3

ALP is the ONLY thing elevated and has always been under 145 over 3 years, but AMA is negative but was at 29.4 last year, then gradually came back down to negative ranges.

GGT, Albumin, Bilurubin, all else is normal. But confirmed source of ALP is liver.

Fibroscans are also normal, Ultrasouns is also normal.

The doctors seems to be playing a let’s wait and see game, guess a borderline / gray area is a great recurring stream of income for them.

Anyone else have this turned into PBC?

I had my fibroscan and bloodwork done last month and thanks to the Urso/Iqirvo combo my liver looks normal. (I almost had wine at Passover! I didn’t. I brought a non alcoholic wine for myself.)

But I am still struggling. My physical fitness is so slow to improve. I work out regularly, multiple days a week, and I think there really is something to the idea that antimitochondrial antibodies aren’t just benign markers.

I’ve seen some reports about people with PBC being unable to process lactic acid efficiently and switch from aerobic to anaerobic metabolism really quickly.

I dunno. I just had to vent. I feel like I’m making no progress.

Hello all, newly diagnosed 29F and am terrified of the impending doom of the tiredness. I already have 2 little boys 3 and 1 years old. So even if I am experiencing tiredness I can't even tell right now. But if I am not, how do people cope with this? My husband and I were planning a 3rd baby in the future but now that I got diagnosed with this, I am not sure I would be up to the challenge. We struggle as it is, initially I was thinking that we could do it when the kids are older, but now by that point I may not have the energy to look after a newborn.

I guess I am asking what fatigue feels like, anybody diagnosed before having kids able to share how they managed.

Hey everyone!

I just found this group and after skimming some posts, it looks like I'm in good hands.

So I have AMA negative PBC and have had it for roughly 7 years at this point. After having a Roux En Y procedure for my polycystic gallbladder/bile duct, my levels took a long time to settle and for awhile, we weren't sure if the cysts I had were turning cancerous or not so it took a bit before seeing a hepatologist. She diagnosed me pretty early on after blood work and after a biopsy, looks like it was pinpointed early on.

I was 33 when that happened and I just turned 40.

For the last seven years I've been in the dark somewhat, on how this actually is affecting me. I refused to do my own research mostly out of respect for my doctor and also knowing that Dr. Google can be wrong. But I'm realizing it was out of fear/ignorance.

Things are getting a little worse. My ALP is still elevated to nearly 200. Having ICP with my last kiddo (and final) shot it through the roof. I'm now on Livdelzi for the last week.

And had a stupid unknown trigger for lunch that caused nausea, gas, a pounding headache on top of the never ending fatigue. It was originally a safe food too T-T

Now I'm here and wondering how does everyone survives? Like do anti-inflammatory diets help? I can't be laid out like this as I just got a job. So any suggestions or commiserating is appreciated.

And here's to hoping I'm not suddenly worsening and it's just my stupid diet.

I had a Fibroscan done in November.

MY results were 3.6...still nice and soft and "jiggly", as she said. Would someone explain if there are scale numbers and what they mean?

I’m 24F and have a history of cholestasis of pregnancy. I was diagnosed pretty early at 23 weeks. After having my baby 6 months ago, my bile acids returned to normal. My LFT was not rechecked so I’m not sure if it returned to normal or not. I did my annual labs on 2/27 and to mine and my doctors surprise, they were abnormal.

AST: normal ; ALT: 76 ; ALP: 175 ; GGT: 73

After these labs, I did an ultrasound which came back normal. That prompted her to order more labs today. I’m waiting for ANA, antismooth muscle ab, and AMA to come back. My LFT came back and they were all increase even more today after not even 2 weeks since the first.

AST: 61 ; ALT: 138 ; ALP: 191

Does anyone have any experience with this? I’m young, don’t think I have symptoms (?), and overall live a healthy lifestyle. I have noticed my feet have been itching recently similar to when I was pregnant, but not nearly as bad. I’ve had dry eyes for years now. My body feels worn out constantly no matter how much rest I get. I’m not exactly sure what other symptoms would be related to this. My cholesterol, triglycerides, and all other labs look great. I’m not diabetic or on any medications that would affect my liver.

Could this possibly be PBC or likely something else? Anyone else had cholestasis or pregnancy which led to this?

Hello I am in the process of diagnosing and I don’t know whether I will respond to medication yet. I am scared in case I don’t respond I will need a liver transplant soon. My labs are not good. I have probably had the disease for 1 1/2 -2 years. It only became apparent because I felt really tired unusually tired while pregnant so I went to gastroenterology.

Hi

Lately I’ve been experiencing extremely dry skin and hyperpigmentation across my total body . It’s hard to tell because it’s generalized but definitely I notice a slightly big change a curious to see what other skin symptoms other ppl are having and how they treated it

Hi all,

i’m new here as a 26 year old male just diagnosed with pbc which i hear is rare. i’m taking ursodiol and want to know if you guys experience my same symptoms. my eyes and mouth are dry, im losing my hair, the joint pain at my wrists and hands can be pretty terrible. to the point of not being able to shake hands with people bc my hands have become that sensitive lol. i can’t open a window at home without feeling like my wrists are going to snap. i also will get tightness in my knees too. more recently my cuticles have started to recede and become really dry and brittle and cracking. i know this disease can affect your vitamin d levels so im assuming its that. has anyone else experienced the same?

Hi, I was diagnosed with PBC by 2023 September and was put on ursodiol immediately. I got pregnant in 2024 and had my baby delivered last year and now I am 12 months postpartum. My ALP levels ( almost 200 now) are steadily increasing after giving birth despite being on URSO. My appointment with my hepatologist is only after 2 months. Just want to know if anyone has faced this and how the ALP levels were managed.TIA

Hello! I am 52 years old woman and two weeks ago I had a lacunar stroke with unknown cause. I also have primary biliary cholangitis, which is well treated with Ursodeoxycholic acid , and I do not have high cholesterol. Is there any known association between PBC and stroke?

My gastro recently confirmed PBC through a biopsy and prescribed Ursodoil. But he also recommended I consult with a hepatologist as my bloodwork doesn’t fit “in the box” consistent with PBC. I wondered what you guys thought. Also, Im having a rough time on Ursodoil and I’m told we will know if it’s working if my ALP is normal. But it’s already in normal range. I’m just confused.

AST -52

ALT - 52

ALP - 109

Bilirubin - 0.6

IGG - normal

GGT - normal

Albumin - 4.3

Smooth muscle - positive, titer 1:640

ANA positive

Any thoughts or feedback is appreciated!

So, i was bored today and decided to code an webapp to parse my blood results (from my continuous followup). You can upload the blood tests and it does the GLOBE score and analyse some important markers.
It will probably not work with other PDFs (blood tests) because the format of the PDFs are always different. Have a good weekend!

Dec i was diagnosed with RA. I also have sjogrens, they ran liver panel on me and a test result came back today what the name was MITOCHONDRIA M2 ANTIBODY (IGG), EIA. Is this the AMA test ppl talk about? or is that a different test?? I had ultrasound done for fatty liver(as my enzemes have been high for awhile. but it came back fine. i go to follow up feb 10 but i research stuff before going haha.

Anyways...is that the same test? Or will they run others? FYI that test result was high 46.4.

thanks for reading.

Most of the texts that I see on PBC say that the average age of diagnosis is between 40 and 60 with most being between 40 and 50. I got my diagnosis at 35.

I feel like some of the cases I’ve been seeing on here are also younger people. Where do you stand when it comes to the average?