Still not prescribed urso

I am not sure what to do here. I was diagnosed last September as Asymptomatic PBC as well as Polymyalgia Rhuematica. I wrote to you all at the time as I was in bad state of shock (prob still am!)

I was told at the time by the Hepatologist that as LFT and IgM were completely normal and I had never had symptom. Liver scan showed nothing.

The view was that until test showed abnormality, or I had any itching that no urso should be prescribed at this stage.( I am in UK, weight not an issue)

The Polymyalgia is now under control and am down to 6 mg a day from 15 last September.

I have changed lifestyle a lot , eat well, rest etc and feel good but have this black cloud over my head wondering if I am at risk not being on urso, the Dr was not helpful but in fairness I have blood tests every three months and so far no change in LFT, all very normal is the word.

Am I neurotic? Would be grateful of some reassurance here or should I bite the bullet and see another GP?

29 Replies

  • Hello Wispa123.

    Well I recently read the latest Bear Facts (issue 70) that was emailed to me a couple weeks ago now and there was a chapter in it on urso.

    I'll paste here the parts that could be relevant in your question.

    I know how my way of thinking is and I feel I'd know what way I would go if I was informed I had PBC but was asymptomatic and had normal LFTs and a normal GGT. I started to itch early 2010 and that is how I came to be diagnosed with PBC and due to abnormal LFTs and GGT I started on urso Dec 2010.

    The relevant info from Bear Facts:-

    "Most doctors currently recommend that UDCA should be offered to

    all those with PBC and abnormal liver tests."

    "It remains uncertain when treatment with UDCA should be started.

    While most clinicians would agree that those with abnormal liver

    tests should be offered treatment, it is unclear whether those with

    no symptoms and normal liver tests should be offered treatment."

    I think if you are being closely monitored by the bloods I think it can be spotted very soon on if you have any changes in the LFTs or GGT and also if you were to develop any symptons of PBC (the commonest are apparently itching and fatigue) then having diagnosed PBC it would be quickly approached.

    I don't think you are being paranoid. Given PBC is said to be currently incurable and also a condition that is seemingly not really known how it will all progress it can be rather confusing at the best of times, moreso as we all seem to have same symptons but at the same time have others that are correlated to PBC that others might not experience at all. Even urso seems to act differently in a lot of us by the rate the LFTs or GGT might start to decrease on it.

  • Thank you peridot, you are a calming influence. I have looked at the bear facts and see what you found. it is reassuring, so feel I will just be vigilant in having regular blood tests done. I am glad you don't think I am neurotic.

    confusing is the word! Especially when one has other auto immune things as well (as Polymyalgia is).

    Bless you.

  • How do you get your bearfacts magazine emailed to you peridot, I havent seen one for many years. when i first joined i got 4 sent to me via post with my welcome letter, but nothing since either via email or post, I just looked round the foundation site to see if I could request them to be sent but can't find any link. Then again they could be staring me in the face but all i could find was old ones to print out ( and that costs a bomb with epson ink)

  • Hello again dollydaydreams.

    I used to get it via the mail but requested to Alan at the office he could send it via email to save their postage costs.

    I looked the other day, the newest one isn't online as yet.

    I am sure if you emailed the office they'd sort that out for you pronto.

    Let me know as I save mine.

  • I have done and just waiting for a reply, if i don't get one I will let you Know :o)

  • I have sent you a reply dollydaydreams.

    Best wishes

    PBC Foundation

  • Hello dollydaydreams,

    Can you pm me your details and I will check we have the correct information for you, ie email, postal address, as it can be sent either way.

    If you are a member, log into the website under existing members. Down the left pane of the page it has the title The Bear Facts. If you click on this it directs you to the electronic copies of the Bear Facts. Click over the copy you wish to view.

    Any problems drop us a message or email.

    Best wishes

    PBC Foundation

  • Thank you, have just responded :o)

  • Good morning Wispa123,

    I have sent you a message with regards to your post.

    Best wishes

    PBC Foundation

  • Hello, I joined Pbc foundation in March 2014, but I received no paperwork at all. May I have Bearfacts and any other information. Many thanks

  • Hello Liver-bird,

    Can you private message me your details and I will look into that, and have them sent to you. If you could let me know your preference in how you want them sent, ( email or post).

    Best wishes

    PBC Foundation

  • Hi Wispa123,

    There are quite a few of us in your boat and many seem to have other conditions as well, so take heart, you're far from alone!

    But that doesn't necessarily help with the disconcerting, unsettling, 'in limbo' feeling plus the niggle in the back of the mind that the doctors we've seen may have missed something due to lack of knowledge. Personally, I keep telling myself that 'unsettling' is still vastly better than having some of the truly awful, debilitating symptoms that others have, and that - for the time being - I'm very lucky. I'm trying to learn to appreciate where I am, just to help quell the anxiety. Do I want to be given URSO (remembering that it doesn't work for all and there are some side effects)? I don't know - one day I think no and the next I think yes, but the bottom line for me is to trust my consultant. The people who could help answer you best possibly are the asymptomatic ones that see the half a dozen experts that are based in the liver transplant centres around the UK but even then as we are all so different, we cannot compare one treatment to another.

    Some have been asymptomatic for over 20 years (with no URSO)! I'm telling myself to calm down & steady up, as I can't continue to be tense for years and years (maybe!). The tension, anxiety and stress will not help. You'll read posts on this site that say URSO should be given early upon diagnosis and other posts that say URSO given early can mask what is happening in the liver by altering the LFT's. But most people posting on this site, including me, are not medically trained. The articles written by liver consultants in Bear Facts are definitely worth reading, as are up to date articles on respected websites (such as Cochrane Library) and the PBC Foundation has some good videos. But old articles and anything written by anyone other than a liver specialist, I'd be cautious with if you want to keep your stress levels down.

    As you are asymptomatic and your LFT's are normal, GP's under the current UK guidelines for PBC will not normally prescribe URSO but these guidelines are currently being reviewed.

    Above all, be reassured, your LFT's are being tested every 3 months so nothing will be missed for very long (you are in a much better position than those with asymptomatic PBC that are only tested annually).

  • What a lovely message. It's seems you know exactly what it's like! I too have mad conversations with myself ' do I want to take pills if it's not neccessary ?' Etc etc. I have been much cheered and calmed by all the messages. This group is marvellous. Am off to enjoy life ( till next wobbly!!) love and warm thoughts to everyone and thank you.

  • Just to second all that badpiglet has said.

    I have had AMAs for 23 years, and still have 'perfect' lfts and no symptoms of PBC. It is a bit of a limbo state, because I have to accept that PBC may develop, but from all that I have heard about urso - particularly that it can mask what is really happening in the liver - I'm happy not to take until I do actually need it.

    UK/European and US guidelines on the diagnosis of PBC require 2 out of 3 diagnostic criteria to be met:

    Presence of AMAs , and/or:

    Abnormal lfts for over 6 months, and/or:

    A liver biopsy that shows bile duct damage.

    As you only have the first criterion, you do not meet the requirements for a diagnosis of PBC, I think if you were having obvious symptoms of PBC they would treat you, or offer a biopsy. Also you are being well monitored, so try to relax and do all you can to treat yourself and de-stress your life and enjoy yourself.

    Take care,


  • Gritty,

    I agree with the diagnostic criteria you state. However, this person doesn't state that she's AMA positive (unless I missed it?) Rather, she states that she has an asymptomatic PBC diagnosis, implying that she either has 2 of the 3, or that the criteria you laid out weren't followed. She states that LFTs are completely normal. Remember that tests of things like ALT, AST, and ALP are not liver function tests. They are testing for the presence of enzymes, transminoases, etc. Only the bilirubin level actually indicates liver function.

    Thus it's possible to have perfect LFTs and still meet the PBC diagnostic criteria.

    Wispa: Are you, in fact, AMA positive, with not only normal LFTs, but normal enzyme and transminoase levels?

  • Hi Kevin,

    I (and maybe others here) was assuming Wispa's mention of LFTs to include tests such as AST, ALT and ALP. This may be wrong of me, but these are generally recorded together under the heading 'Liver Function Tests' (as well as the bilirubin and globulin readings), on the printout copies of results that I collect from my GP. However, this varies, as my most recent results included ALP under 'Bone Profile'.

    Where I live, the Labs appear to be a law unto themselves, doing the bare minimum of tests unless the GPs demand all be included, so not all of these tests are always included - most recently my GP had to do a special request to have GGT included, as they had not been including that.

    I think we may find that most (UK?) information for the lay person lumps these tests together as LFTs - does the PBC Foundation folder? I know the tests for these main chemicals are all discussed together, in the PBC F file, but the heading may not be 'LFTs'. My GPs and Consultant talk about my results as Lfts but maybe that's their shorthand.

    Now that you have made me think about it, I don't recall any specific definitions of how the tests are characterised. It probably is there in research papers and I've skimmed it. Lower down Wispa seems to acknowledge that she only has AMAs.

    However, you are raising an important point, as so many of us assume that our 'PBC' is the PBC that everyone else is talking about. I wish we could all get into the habit of asking new posters to state exactly what tests have been done, what results, and what was said. So often we start answering questions from our own pov and understanding of PBC, without really knowing quite where the poster is coming from. It's also possible that accepted diagnostic criteria were not observed - they often aren't.

    Thanks for raising this though, I do think it's important to be as accurate as possible, and I know I'm guilty of being slapdash when I'm rushing to get back to my work.

    Take care.

  • In my part of the UK, there are 4 tests they class as basic LFT's:

    ALT, ALP, Albumin & Bilirubin.

    There are additional ones classed under 'LFT's', such as total protein, but it has to be specifically requested.

    Technically they may not be tests that show the 'function' of the liver but that is the umbrella term used by doctors when requesting that combination of tests.

    In addition other tests may be requested, such as GGT and Ferritin, but these tests are not done automatically in the UK.

  • Hi bp,

    I often have a mild rant when I cannot find an important result, and it is often because it's been placed somehwere odd, eg the ALP in 'bone results' in the last lot!

    Will PM you about Monday -all good - just off for a walk, after too much time in cars.

    G x

  • Mild rant? That was nothing! My status right now is 'slightly unhinged'! With emphasis on the unhinged.

    You're right, a good walk is in order.

  • How do you all control your itching? If not taking Urso..

  • If you only have AMAs, you won't necessarily have any itch. Although AMAs can be a strong indicator for PBC they alone are not diagnostic. So, as yet, someone with just AMAs does not necessarily have PBC and probably won't have itching. See my comment above to Wispa.

  • Anti histamine or questran.

  • Asymptomatic means no symptoms (including itching) that the doctor can tell from looking at you and from what you choose or remember to tell him in the allotted 5 mins.

    I did have a couple of days itching about 9 months ago but the plumber had turned the heating up without my knowledge and I was moisturising thoroughly. Itching stopped completely when I turned the heating down and I stopped moisturising altogether (think it prevented the skin from 'breathing'). So I don't think it was connected with PBC at all.

  • As others have replied, a positive AMA with no other indications or symptoms of PBC is NOT diagnostic for the disease. I'm in the same situation - positive AMA with normal LFT's and no symptoms. I even had a normal biopsy, which was done after a surgeon in an unrelated surgery noticed a tiny area on my liver that concerned him. This was over 3 years ago, and recent labs still show liver enzymes absolutely normal. The AMA scared me when discovered and for a long time felt like a ticking time bomb, but I don't stress about it now, and my hepatologist very emphatically told me that "a positive AMA by itself does not mean you have PBC - you do not have it now, and may never develop it." He also said it was appropriate to test labs every 3-6 months just to stay on top of things in case they ever change. We have no way of knowing how many people are out there with positive AMA and no symptoms, because it is not routinely tested for. Try to relax, live your life, and take good care of your body - healthy diet, eliminate toxins in your environment to the extent possible, exercise, etc. and as for URSO, I certainly don't want to be on it without any symptoms - it can cause side effects, and there's plenty of time to start it if labs ever change. From what you've shared, you were misdiagnosed and shouldn't have been given the PBC label. It may bring peace of mind to get a second opinion and have a liver specialist assure you. All the best.

  • Thank you. I have learned a lot and feel much better about it. I take the point only having one pointer to possible PBC, so have decided to do just as recommended by many of you. to relax, its not a cloud and as you say goodness knows how many people out there are in same boat just that they have not or may never have a blood test showing raised AMAs.

    At the time I was in such a state of shock having NEVER had any serious illness before, that I didn't ask the right questions at the time hence all the dawning realisation of implications, now .

    Again many thanks for taking time to post message.

  • My pleasure, I can relate to what you've been going through. I think you will be just fine. :-)

  • I want to associate myself with what Gritty, dianekjs, and others have written here. Like them (and apparently you), I have positive AMA and no other symptoms or PBC indicators. I've written elsewhere that the probability of any particular individual having or developing PBC, in such a situation, does not exceed 6.7% What puzzles me though is that you state that you already have a PBC diagnosis. Did your doctor diagnose you based on AMA alone?:

  • Hi Wispa,

    Just to re-echo Kevin's question : did your GP/consultant diagnose you purely on the basis of testing +ve for AMA?

    Also, if you don't mind me asking, where are you? I'm in Devon, UK and was diagnosed as 'presymptomatic PBC' (strictly speaking, this diagnosis does not exist) just on the basis of AMAs. Yet others I know in the area, with the same AMA-only presentation, were told by different consultant(s) that they definitely don't have PBC, although (like me) they have to have regular lft checks - as it can always develop.

    I gather the leading PBC specialists are working out new guidelines and recommendations on diagnosis; including (I believe) trying to clarify this issue.

    Take care, I do hope you get some answers soon.

    Cheers, Gritty

    PS You can always message me privately if you don't want to say where you are on the site; I also believe we are not really supposed to discuss consultant's by name on here - or at least that's what happens on other sites.

  • I know Im a little late to reply, I just saw this. I am like the few others who have posted on here, positive AMA but had a normal ultrasound AND normal biopsy (my doctor wanted me to have the biopsy as well and I figured I would just to be sure). Please try not to worry, it seems as though there are probably a lot of people that are AMA positive that have no idea they are and will not go on to develop the disease. I feel lucky to be alright for the time being, as some people have really bad symptoms. My AMA was caught on a random blood draw done by an allergist and I was worried sick for weeks about this until I got my biopsy results (just got it back yesterday) I am taking it one day at a time and trying to enjoy life and my kids! I am sure you will be fine. And again, there are probably a lot of people in our boat that have no idea they have positive AMAs. Sending you my best! :-)

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