Just diagnosed with PBC


Thankful I've found your forum. I went to GP for gastro issues and found to test positive for AMA. Was prescribed Urso 300 mg x 3 a day. Just curious as to what stage I might be in. Is this considered alot to take right off the bat and does this mean I have some liver damage? I feel fatigued all the time as well as queasy, best I can describe. Food doesn't seem to stay down, not that I throw up, but food comes back up into my mouth often.

Thank you for your replies,

20 Replies

  • Hello kauthement.

    Well I started itching early 2010 when I was 45. I took myself off to the GP after it didn't vanish within a fortnight. Started having bloods done and found to have abnormal liver function test (LFTs). That then set me on the path to being informed I had PBC Dec 2010. I started urso. I was 46 by then.

    I did have a scan a few months after starting to itch. My liver apparently looked normal, as did surrounding organs and the consultant at the hospital informed me on my first visit (the day I had the antibodies check - my AMA was with a high titre, the ANA negative), he could see clear bile ducts.

    My GGT blood test which is one that tends to be taken with liver disorders (I had my first one at the hospital) showed that there was slightly liver inflammation as it was abnormal reading.

    I did have fatigue back in 2010 but after starting urso, making a few small life changes at some point during 2011 it vanished and so far I'm not troubled with that although the itching does cause tiredness as it starts later at night and doesn't end daily until 5a.m.

    Personally, I don't go in for stages of PBC, never have nor do I want to actually think about it. I go with how I am feeling, how I think I am doing (quite fine at the moment, over 5yrs of itching, almost 5 years diagnosed with PBC. I am now aged 51) and take the print out of the bloods each time I have them so I can see. Mine haven't gone back to normal, they tend to not be expected to with PBC but they are said to be quite normal for someone with PBC.

    It can be said that America for instance, their doctor tends to want a liver biopsy for some staging but it has been a bit contradictory in that the part of liver where the sample is taken isn't necessarily the complete picture as part of the liver can be perfectly normal and another notso. Having a biopsy after one has been diagnosed with PBC via other methods that tends to be symptons, bloods and the antibodies the biopsy cannot really change treatment of PBC. A biopsy it has to be noted often tends to be done when a doctor is in any doubt. I can't comment there as individual circumstances vary. I know I'd not agree to a biopsy now I have been diagnosed with PBC.

    If you are finding that you are encountering some sort of food reflux in my view it might be best trying to eat little and often. It is said it can be good in PBC. It might be the case that you are encountering this sympton due to starting to take urso. I know when I started urso I started with heartburn that I never had prior. That vanished within the first 3 months of taking it. I also started getting constipated which I never was prior. A bit of tummy bloating seems to be the norm with a lot, I got this for a short while too.

    I take the urso with breakfast after I've had some food and then I take my last dose just before the evening meal with a dry biscuit, seems to work ok for me. I find in my case I still eat a good breakfast and can eat a good lunch, it is the evening meal I then tend to struggle with but that might be just a natural thing with age now even though I tend to be on the go most of the day due to the itch that I tend to feel if I sit down for periods of time.

    Out of interest, I used to take 300mg tablets of urso (2 a day) when diagnosed and they were by a pharma called Wockhardt. A couple yrs ago these were withdrawn due to their license and I had to be transferred to the 150mg tablets that I doubled up daily for the 600mg dose. I did contact Wockhardt late 2014 to enquire as to when they were back on the market and at that time they didn't appear to be. Do you know who makes your urso 300mgs? I know I had less problems taking the 300mgs than I did when switched to 150mgs as I was given generics then and I knew straight away as the heartburn came back and persisted for more than 3 months so I switched to a brand (Destolit) and so far had no problems.

  • I haven't started the urso as yet, I was contacted by my GP on Tuesday. The meds are over $300 and I could not afford. Trying to find out if there is an alternative med. But as soon as I start on this med, I'll be happy to let you know the brand.

  • I myself would like to know where I'm standing as far as my liver condition. If it is early stages, gives me more hope for my future endeavors and if later, at least I can decide then if I'll be able to start these endeavors. I understand what you don't know won't hurt you, but it might, lol. However no biopsy has been discussed at this point, makes sense that you would have areas that are normal and some that aren't. Not a real indication of what stage you would be in.

    Thanks for responding. Take care!

  • Hello again kauthement.

    I think it varies between individuals. I like to know exactly what is going on but I often find with a doctor it feels like I am asking something that is top secret!

    I saw an hepatologist back in 2010 and he was the one who diagnosed my PBC. He said on my first visit 2 months after he diagnosed PBC (he relayed it to my GP who informed me) that he gave talks to GPs to make them aware about PBC. He did say that by the looks of things for me I hadn't had PBC overly-long and that it had probably started a 'few years previously'. Up until the itching I'd not had any health problems at all that were significant.

    I do think that regarding our PBC it can be a bit difficult knowing exactly but I do know that a couple months prior to me being diagnosed with PBC I saw a tv programme that was live to air and it featured 2 guys, one in his 30s who was said to bequite overweight and his scan there and then showed he had a fatty liver. The other man in his early 50s and a drinker was said to be in the cirrhosis stage. I think from a scan a lot can be known about the liver then. The specialist who went through the scan on the tv programme pointed out certain things and I feel confident regarding these ultrasounds.

    I somehow don't think in early PBC it can be known exactly how one will fair with it. I could be wrong but it seems that everyone seems to go at varying degrees with it.

    I know when on urso a doctor can actually have some indication of certain things and the bloods probably come into it here. It is said that there are a couple markers that are used in PBC. One is bilirubin.

    I can say from experience that when you are newly diagnosed with PBC it is a lot to take in and moreso when you are informed it is something that is currently incurable. I wasn't sure if I'd still be here 5 years down the line back in 2010. I went through a bit of a struggle in the first year after diagnosis, getting to grips with the fact the urso was here to stay, part of my life now and the changes that started taking place slowly over time - the itching changed pattern after some time, became better - and then just came to the decision that it was time to get on with life and enjoy, make those memories.

    I still feel guilty that after being a widow for many years my children had grown up, I had met someone else, got married in 2009 and before our first anniversary started to itch. I try to put it out of my head and resolved to deal with things as and when as at the end of the day those things might never come around so no point worrying needlessly about them now.

  • I totally agree, I'm not the type person that dwells on the negative. I however had been diagnosed with Lupus 6 years prior and now looking back, thinking I may have had this all along, so just concerned as to where I'am at. Great talking with you, you are very informative.

  • In my opinion, the area biopsy is only a tiny sliver of your liver. It's painful and unnecessary for the most part. I turned it down and will again .

  • Hello kauthement.

    Now I understand, you are not in the UK as the 300mg (Urdox) I mentioned was in the UK. I know in the US for eg there are different names for some of the urso, maybe all.

    Urso(deoxycholic acid) is the only medication available that is approved for use in PBC apparently.

    It is said that here in the UK it costs around £1,000 per year per patient (I read that in a recent newspaper article which was uncannily featuring PBC and lack of awareness). I know the brand I receive is dearer than the generic but for me the generic in the 150mg tablets was causing me a side-effect that wsa persisting. I didn't have the problem with the Urdox 300mg even when I noticed at some point (due to packaging) it had been then given to me in the generic (but same pharma). I personally deem it fair in my case as urso is the only presribed medication I have and pre-2010 I was never at the doctors, it had been 1999 since I last had a prescription for antibiotics, one that is common and probably very cheap to our NHS anyway. I have to contribute towards the urso each time I get it so I asked the GP to give me 90 days supply and had to push for it as a lot here in the UK now only prescribe patients on repeats for 28 days at a time I found out. (I was given just 28 days when I got a different GP but I had to go in and fight my corner and then he upped it to 84 days. I had it reinstated to 90 days only last year as I went in surgery to 'bug' another GP I've been seeing with the PBC and said how daft it was that the packaged urso comes in 15 days supply boxes so she gave me 90 days.)

    Hope you get the urso soon as it can aid the LFTs somewhat which is supposed to help slow down any progression of the PBC.

  • My urso is Watkins and costs me $215 which is 44% of the cost : my Medicare pays 66%. I'm in the USA. I believe you must get it. From what I've read it's the only thing that works!

  • Excellent Peridot. I live in the US and they always want to do a Liver biopsy...then went to top PBC specialist in NYC who is one of the top in my country,     based on second positive AMA result she was in no way pushing me for a Liver Biopsy bc I am asymptomatic so far on the URSO..... I am soooo lucky all the best to you...

  • I've been told they work the urso dosage out in relation to your weight & there's currently no other meds available but research is ongoing.

  • There are clinical trials in my country USA of a new drug for PBC it is going to be approved here in the USA soon . Yes URSO dose based on weight.. all the best to you

  • Hi,

    Have you seen a liver specialist - preferably one who really knows about PBC - or is this all coming from your GP?? I know things are different in the States, but most UK GPs know 'diddly squat' about PBC, and would send a patient with +ve AMAs, to see a liver consultant for further tests.

    I'm just concerned about the criteria for your diagnosis: I assume your liver function (blood) tests must have been abnormal. In both the US and UK the presence of AMAs, alone, is not enough - on it's own - to absolutely confirm a diagnosis of PBC (although AMAs are a strong indicator of PBC). For a diagnosis of PBC, as well as AMAs you need abnormal liver function tests and/or a biopsy of the liver that shows PBC-type damage (NB this is the only way of 'staging' PBC). However, if you are having symptoms of itching and fatigue, they may be going by AMAs, plus symptoms ... but even then I would be surprised if you did not see a specialist.

    However, if you are having reflux, your oesophagus should be examined. Also, you should be checked for various other autoimmune conditions, [NB I've just noted that you have lupus, I know this has fatigue associated ... I'm surprised you were not tested for all other autoimmune conditions when they diagnosed lupus.] Also, has your liver been checked to rule out other liver issues? Sometimes a check for vitamin and mineral levels also needs to be done, in case you need something boosting, and maybe even a bone density check.

    Sorry about the expense of the urso - that's a bummer. That's why we are terrified here in the UK of losing our NHS - but as teddybear has said, that is currently the only treatment, and the dose is determined by body weight.

    I would talk to the PBC Foundation - link to their website at the top of this page. Their advisors may be able to help more - you can email.

    Take care, I hope you get sorted.

  • Hello,

    I have not seen a liver specialist, I actually just went in for a routine colonoscopy and since I had stomach tenderness, GP decided I needed to get a CT Scan to rule out appendicitis. And of course they did their own bloodwork. I was then called by the GP a few days later stating that good news I don't have any hepatitis but I do have PBC. He would then call me in meds, Ursodiol 300 mg x3 daily.

    I have not even had another visit to the GP, this was on Friday last week. So I'm totally in the dark as to what he's basing it on except high ALP and AMA positive.

    Although diagnosed with Lupus, osteoporosis and sjogren's over 5 years ago, I have not had that many symptoms to be treated for other than joint and muscle pain. I was given a prescription for Plaquenil, although never started it.

    So I've basically just been living with symptoms due to no insurance and just trying to tough it out until necessary.

    The acid reflux just really got bad the last 3-4 months, I also thought I could live with that. And I did notice the extreme fatigue, I thought boy I'm getting so lazy or maybe its the lupus, lol. As far as the itching, although it seems to be here and there, mainly on my palms, I told myself, "We're gonna come into some money!" Ha, an old wifes tale in the states....

    Just in shock as I never even heard of this condition.

    Thanks for your input,


  • Hi,

    The high ALP plus AMAs is usually enough for a diagnosis, and if you have some symptoms and prior diagnosis of other autoimmune diseases that are common to folk with PBC, then I guess the GP is right. However, you will need regular checks to make sure that you are responding to the Urso, and hopefully the ALP will drop - it may be that other lfts were a little awry as well. Maybe regular ultrasounds or fibroscans as well, or even a biopsy, now, to see exactly how your liver is.

    NB I also - really - think he should check your oesophagus, the reflux should not go unchecked.

    If you look at the PBC Foundation site and the Liver Trust site, you will get lots of info on diet and exercise - and things to watch out for - but don't go mad and make your life a misery. You need to have fun and spoil yourself too, so don't give in to stress and worry as that's the worst for autoimmune diseases.

    Get your meds and other checks sorted, read up as much as you can, but then also live life to the full and do the things you love, and succeed in your chosen goals.

    Take care.


  • Thanks Gritty,

    Your insight has been educational to me as well as your encouragement.

    I'm sure we'll be talking again soon. Take care.

    Kim A.

  • Most Drs here in the USA don't even know what it is....only gastro (rarely) or Liver specialist bc it is as we know it is a very . RARE disease I tell Drs to look it up on the internet if they don't know what it is....

  • Hi, kauthement.

    I first heard of PBC when I had blood work done in December, 2013, that showed a slightly elevated alkaline phosphatase. My gp ordered ultrasound that came back as fatty liver. He ordered the GGT, AMA, and immune panel (that's an expensive one!) for more info. At the time, I did not have insurance, but got it a few months later.

    The GGT and AMA were both elevated significantly along with alk phos. and the only thing on the immune panel was elevated antibodies for Sjogren's. I keep copies of my lab reports and on it I saw the reference that elevated numbers was an indicator of primary biliary cirrhosis. My reaction was "What's that???"

    I got my alk phos back to top of the normal range with the new tests, so we waited 6 mos to check again. Alk phosphatase was back up even higher in May, so I saw a gastro who ordered a liver biopsy. He formally diagnosed the PBC and promptly put me on ursodial and took me off HRT meds that I had been on since surgery. What a ride that was to adjust to all at one time!!

    I am now a little over a year past diagnosis and addition of ursodial and I have learned to take better care of myself along the way. My life is much improved, but I still struggle with unexpected bouts of slight nausea that hit without much warning. I get help with management from a chiropractor/kinesiologist and he helps me keep everything in balance (diet, work load, supplements, etc.) I call him my wizard since my health/life improved so much in the past 12 months. If you can find one, he may be able to help you as well. Take care! (I am also in the US.)

  • I just had blood work and it showed my liver enzymes were elevated. They were 118, 120 and then 125. Is this very bad.? I have to go for a liver biopsy. I am so afraid. I have been itchy for 4 years. Told my GP and went to dermatologist. She said it was dermatitis. Gave me medicated shampoo!! It didn't help. My body itches but not much. It's my head. I was given Atarax and it helps a bit. Sometimes I'm not itchy at all. I noticed the past few months I've been very tired. I've been blaming it on the hot weather, as I don't like the heat! I was in the hospital for a touch of food poisoning, after ruling out a gallbladder attack. That's how they found out about ️my enzyme levels. But they never told me about PBC. They just told me to follow up with my gastroenterologist. He ran more blood tests and decided I shoul have a biopsy! He stressed he is not 100% sure that I have it but he wants to make sure. According to him, my levels are slightly elevated. With all the research I've done, I can't find out what is a normal enzyme level! I am so sick overt this. My mind is going in a million directions. After reading many articles, I do have several symptoms. Any info or advice is much appreciated. I am terrified!!!! TY

  • I would ask for ursodiol and see what happens to your liver test. If you have PBC what can they do? I didn't take liver biopsy. It only takes a small portion of the liver . What's left but to take ursodiol? Take the ursodiol and see how you do!

  • The dose of the URSO is based on your weight. It is scary when first diagnosed.. I take 1200 total dose URSO daily based on my weight..... I see a Liver specialist although my Gastro is good too...DR best to answer your questions about what stage ...good luck and be well

You may also like...