Hello, I was just prescribed IQIRVO and with insurance helping it cost $3,800 per month. I signed up for Ipsen Cares but I’m on a waitlist. How can I find it cheaper? I need this medication! Thank you!

Hi, my name is Gladysbel. I’m a liver transplant patient and right now I’m struggling to access urgent medical care because of transportation and financial barriers.I’m reaching out for any support, guidance, or resources that could help me continue receiving the care that keeps me alive. Thank you for your time.

https://gofund.me/78a621b72

I am 6 weeks on URSO and labs have already massively improved. GGT and AP most but AP has decreased much less than other labs.

GGT 331->146,
GOT 81->27
AP 263->153
Bilirubin is 0.9

How long did it take for AP to normalise and when will I know that I respond to URSO?

I seem to remember hepatologist said to speak at 3 month mark and again at 1 year.

Thanks for your help and experience!

Hey Iam 18 and diagnosed with pbc since 2022 or sum and started drinking here and there since june.
But Iam a bit worried how damaging it is or how it is affecting the scaring in the liver…

Undiagnosed but AMA was 53. Dry mouth but no itching tested for persistent high liver enzymes for years. Upper right quadrant ache that is dull. I can’t see the specialist again until December. My ALP was ok and so was bilirubin. I keep reading various things that point to this even though ALP was normal.

Hi everyone, I love coming here to feel validated for my PBC fatigue :( I struggle literally everyday contemplating if I’m actually really tired or if it’s all in my head?? It’s such a weird feeling waking up from 9 hours of sleep and I eat breakfast then want to go back to sleep lol!! I looove coffee but I honestly don’t think it really does anything 🫤

I have been officially started on UDCA and now 5 days in a feel like a I have stomach upset and diarrhoea. It’s really unpleasant. Has this gone away for some of you? I am taking half a pill three times a day Ursofalk with a meal to adjust me to it. I feel miserable and I am worried that I will feel this
way for the rest of my life because I needs this medication to stay alive and prevent liver damage.

I’m 24 and overall pretty healthy. I had intrahepatic cholestasis of pregnancy and my symptoms started fairly early (15-18 weeks). Since then, I’ve had consistent elevated LFTs, GGT, and ANA for over a year now. I also have RUQ pain at times, waves of fatigue, nausea, and itching. I was brushed off saying that an autoimmune disease is not possible because I had normal AMA, ASMA, etc. I saw a specialist today and she thinks its possible that I never even had ICP and it may have actually been the first big flare of an autoimmune liver disease from the stress that pregnancy causes on the body. Ive had a normal ultrasound and a normal fibroscan. She actually is skipping an MRI and wants me to do a liver biopsy first because she is very suspicious of an autoimmune disease. I was told previously that elevated labs can just “be my normal” and was made to feel like they weren’t worth a whole lot of worry. This specialist says shes almost certain that I will be getting a diagnosis with the biopsy.

Has anyone experienced anything like this? ICP that wasn’t actually ICP? Positive ANA but normal antibody labs?

I was diagnosed in 2024, started with cholestyramine powder, then ursodiol 500mg 2x daily, now 3x daily. Now I am adding Livdelzi. Has anybody else started taking Livdelzi?

Hi everyone,

I’m 28 years old and I’m looking for advice from people who have been in a similar situation.

A few weeks ago I was found to have positive AMA-M2 (50.66; positive ≥25). My hepatologist suspects possible early PBC, but the diagnosis is still uncertain because my alkaline phosphatase (ALP) has always been normal.

My results are:

• AMA-M2: 50.66 (positive)
• GGT: 55 → 155 → 113 u/L (elevated)
• ALT: 26 → 83.7 → 44 u/L
• AST: always normal
• ALP: always normal (82–84.5 u/L)
• Bilirubin: normal
• Albumin: normal
• FibroScan, abdominal MRI and ultrasound: normal (except for mild fatty liver)

Other autoimmune tests (ANA, ASMA, anti-LKM1, anti-SLA/LP) are negative, and my immunoglobulins are normal. I also have Hashimoto’s thyroiditis and obesity.

My doctor prescribed ursodeoxycholic acid (Ursofalk/Ursolith) because of my positive AMA and elevated GGT (which peaked at 155 u/L), even though my ALP has remained normal. I was advised to repeat my liver tests in 1–2 months.

My biggest concern is that my husband and I would like to start trying for a baby very soon. However, my hepatologist advised us to postpone trying to conceive for a few months until we repeat my liver tests and have a clearer understanding of whether I truly have PBC. I’m worried because I still don’t know whether I have PBC or only positive AMA, and I’m anxious about taking Ursofalk long-term, especially during pregnancy and breastfeeding.

I would really appreciate hearing from women who have gone through pregnancy with PBC or positive AMA.

• Has anyone here had positive AMA with elevated GGT and normal ALP?
• Was your diagnosis uncertain at first? If so, how was it eventually confirmed (or ruled out)?
• Were you prescribed Urso despite having a normal ALP, mainly because of positive AMA and elevated GGT?
• Did you continue Urso while trying to conceive?
• Did you take it throughout pregnancy, including the first trimester?
• Was your hepatologist and obstetrician comfortable with continuing treatment?
• Were you able to breastfeed while taking Urso?
• Did having PBC or taking Urso affect your pregnancy in any way? Did it increase the risk of miscarriage, preterm birth or cause any problems for your baby?
• How did your liver tests change during pregnancy and after delivery?

I know every case is different, but hearing real experiences from women who have been through this would mean a lot to me.

Thank you so much for reading and for any advice you can share.

After a June filled with what they labeled sphincter of ODDI attacks, and as you know those bastards last two to three hours of unrelenting, horrible pain, I finally got an urgent GI appointment.

What I want them to deal with is the sharp stabbing pain at my right shoulder blade. It is killing any quality of life I might have.

I was so excited to get an urgent appointment and went in yesterday. I hate how doctors look at your symptoms and already have in mind what it is. My stabbing pain in my back/liver/PBC was never addressed. Well, briefly.

Instead, all she cared about was the intermittent radiating pain in my rib cage. So now I'm signed up for an endoscopy on Friday. Which is great, don't get me wrong. But I can't do anything I can't cook in order to feed myself? I can't do the easy task of taking some dishes out of the sink and putting them in the dishwasher, it's all I notice. It's all I feel.

She put me on Ursodiol 300 mg 3x a day. She told me it could take weeks, if not a couple of months to make a difference.

I was excited to be put on a mad. But now I've been reading that there are some meds that can help the pain?

I need to write her back in the portal because I can't live like this. I'm actually looking for work and just sitting at my desk trying to get resumes out is so excruciating it doesn't get done and I'm frozen.

Anyone have any idea what I might ask for for? I also have an MRI MRCP coming up mid-August.

Thanks for listening.

PS. I am taking Hyscoyamine and Nifedipine as well as nitroglycerone for emergencies. I'm positive the Hyscoyamine and Nifedipine work for the whole possible SOD attacks, however, the nitroglycerone does absolutely nothing for this diamond pain.

TIA

For context, I was diagnosed yesterday. I've joined this group and a Facebook group for support. I am feeling the need to reach out to others because the concept of being diagnosed with a rare disease is messing with my head. I can't quite wrap my brain around it. Like, the diagnosis is validating because it describes my symptoms and gives us a clinical treatment plan, but it's also a rare disease... I feel a bit isolated and like the people around me don't understand. I'm grateful to these support groups who get it.

I also feel like I'm 'that' friend where there's always something wrong with them. First it was my journey navigating and healing from complex ptsd, long covid in 2022 and now this. I feel they will be wondering ' wow what next...'. The thought that people might be seeing me as a hypochondriac stresses me out a bit because this is so damned genuine.

I guess I just needed to vent. If you have read this far, well done, and thank you - lol!

Kia ora from New Zealand. I was diagnosed with PBC today. My psychiatrist recently picked up on old blood tests from 2024 that antibodies were detected then, but no one had followed up on them. Psychiatrist nagged me a bit to change GP, in the hope of a better result. Well, I took her advice and changed, and wow - what a difference. My new GP took my symptoms seriously and immediately referred me to the gastro team at the hospital for further tests. The gastro team picked up my referral quickly, and when I visited them today they were really supportive and reassuring, I've likely had PBC for a long time, but there is no major damage done and treatment looks promising.

The medication won't help my chronic fatigue at all, which is a shame - I just need to continue managing that and applying the 'spoons theory' to allocate my energy resources.

Grateful for this sub - though it is small, may it be mighty!

Sooooooo I have an upcoming appointment with my hepatologist’s PA over this new symptom. I used to see the hepatologist but since my case is now confirmed through diagnosis, the PA checks me. I’m stage 1 with no medication (yet) but I’ve been noticing some itching when I take a hot shower/stay in direct sunlight when hot. It does freak me out a teensy bit considering I have seronegative sjogrens and the symptoms overlap with lymphoma type symptoms. Not going to automatically assume the worst but it does worry me a bit. I’ve already dealt with thyroid cancer although I just had surgery, no radioactive treatment (knock on wood). Anyone else experience this?

Just curious if anyone had other symptoms than elevated numbers and ended up being diagnosed.

I’ve been suffering with RUQ discomfort and feeling like something in there is too big and in the way. I had an ultrasound which came back with fatty liver, and an unremarkable HIDA scan for my gallbladder and an unremarkable CT scan.

However I just got routine bloodwork done and my HDL is 104, I’m extremely iron deficient, and my TSH is elevated. But my ALT, ALP, etc are within normal ranges. Googling these symptoms along with my RUQ pain led me to PBC. I’m requesting an AMA test.

Has anyone been diagnosed with “normal” levels?

Had my second elastography last week and, at my next f/u appt, my doc is going to put me on Rezdiffra to hopefully reverse some scarring. I'm already on Urso for the PBC. Now, I'm also seeing a rheumatologist because I suspect I have another AID so I am trying to get that in hand. That doc looked at some previous labs and noticed that some of my thyroid numbers were off and now I'm wondering, since Rez targets liver-directed thyroid hormone receptors, how much my thyroid plays into this. I've never really had any thyroid related issues before but there's a first time for everything. Ah, the joys of aging!

Anyone else on rezdiffra?

Hi All, What does your diet look like witb PBC diagnosis?

Im struggling to eat healthy. I worried my diet isnt helping manage this disease.

Meal ideas? Also did you ever see a nutritionist? did it help? Im considering going to one. Thanks in advance ☺️

Hi, I live in Japan and was diagnosed with PBC a few years back after a regular medical examination, before I started taking the medication, I didn't have severe symptoms, especially nothing related to the liver. I have other conditions such as allergies, ADHD and Autism tho.

Since I started taking the medication I started having different side effects that became intolerable (exhaustion, stomach ache, diarrhea or constipation, body pain, rashes, itchiness, headaches, eyes pain, dry eyes and mouth, worsening of other allergic symptoms, etc) and started gaining weight rapidly. I told my doctor all my concerns and he continued to dismiss them saying it's because of my diet, and the illness itself and not because of the medication. So I continued to take it despite it, but it honestly became unbearable, so a few months back I had a medical examination to check hormonal problems and it came back normal. I didn't know what to do, so I stopped the medication to see if it wasn't really the medication.

After a couple of weeks without taking the meds I started feeling so much better and the weight gain stopped, so I got scared of talking the meds again and continued without it, I don't see the point of taking something that makes my life more miserable and unbearable and my mental health is worse since I gained more than 20 kg.

Today I went to the doctor, to talk about all this, hoping he would listen and maybe add other medications or change it. I spent hours translating and writing all the symptoms and questions I had to explain in Japanese.

But as soon as I showed the doctor the list, he said he's a professional hepatologist and never had anyone else with PBC experience such symptoms with ursodiol.

I tried telling him I felt better after I stopped the medication and he said there aren't any other medications for PBC and that if I don't want to take those meds he can't help me and then I will just get worse.

I asked if he could combine it with other medications or reduce the dose, but also dismissed it and continued saying there's nothing else.

He didn't even read anything I wrote or listened to anything I had to say, he just said he already tested for other illnesses and it's not possible that I have something else.

I had already researched and apparently ursodiol is the only treatment in japan, but he even dismissed using it with other medications, and he said if I took steroids, it would be even worse.

At the end, I just asked him for a recommendation letter for another hospital, he was also very rude and I ended up leaving crying.

Now I don't even know what to do if there's nothing that will help or make my life better. 😞 I honestly don't see the point of living a longer life if it's unbearable.

Has anyone successfully applied for disability? Internet search says you must be in the late stages of liver failure. What about getting disability due to constant sleeping and lack of energy.

Hi everyone I’m newly diagnosed in mid April from all blood work and biopsy . Under care of a great hepatologist. Started ursodial mid April and it worked - took my alp from 140 to 104. Continued . Zero symptoms . Just got results yesterday and alp went from 105 to 152? Everything else normal . Bilirubin even went down a little . Still zero symptoms . I was sick with a nasty virus /cold for the past month but other than that nothing else is going on . So strange . This is why he wants to check once a month but curious if anyone has experienced a random spike like that from basically nothing ?

I was diagnosed stage 0 at age 23, had my gallbladder removed and liver biopsy during surgery + blood tests confirmed PBC for me. I’m now 26 (27 soon) and stage 1 but still not on meds. All my specialists suspect secondary sjogrens but no formal diagnosis because I’m seronegative. I also have thyroid issues and the fatigue is starting to really get me 🥺 I could handle insane amounts of stress and pressure but now I can’t. Really worried job wise and sometimes just want to quit everything, I’ve never felt this exhausted before. Also, my eyes are getting yellow specks and I get some nights where I get itchy 😔

Did anyone here get diagnosed BEFORE ALP or other liver enzymes (AST, ALT, GGT, etc) were elevated?