Is this normal

I was diagnosed with AIH in april 2014,after initially being told I'd need a transplant,my condition stabilised with large doses of steroids.For the past year I have been on my current medication which is tacrolimus,prednisolone and ursofalk,even though I have never been diagnose with PBC,.

I have blood tests every 3 months but haven't seen a consultant for 9 months and am just wondering if this is normal.I want to ask why I still need steroids and why I'm on ursofalk without being told I have PBC ?

Just wondered what other sufferers experiences have been,my consultant just says my LFT's are stable and leaves it at that ,would appreciate any feedback,many thanks x

12 Replies

  • Sounds like your GP is running the 3 monthly blood tests? And then forwarding them to your consultant? Or are you going to clinic every 3 months to get the bloods done, just not seeing anyone or getting copies of the results?

    You should see a hepatologist every 6 months at least, more frequently if things are not stable (but you have been told they are, it would be interesting for you to actually SEE copies of the results and see if you agree things are stable!). However if things really are stable, then perhaps 9 months is ok, i personally wouldnt like that.

    When you left your hepatology last time, were you not given a follow up appointment at the time? At my hospital when I check out of clinic my hepatologist tells me when he wants to see me next, and I book the appointment with the clerk before going home.

  • I had a 3 monthly blood test which showed my tacrolimus levels were low but LFTs were stable. Was sent another for 6 months time and no appointment. I'm on ursofalk but have never been told I have PBC ! Am I wrong to want some answers ? Have permanently swollen and painful ankles and calves but am told not to worry about it,thanks for replying

  • Where do you live? I have AIH/PBC and see my consultant at kings every 3 months. Maybe they are happy with your blood results now and you are stable.

  • I live in the midlands and go to derby Hosp. Am taking ursofalk but have never been told I have PBC ! Have swollen and painful ankles and calves but consultant tells me he's not worried about it,but I am ! Can't work,always tired and can't stand for long,thanks for replying

  • Doesn't sound right....

    1) Firstly the fact that you are on Prednisolone and Tacrolimus is a bit odd since usually you would start on Prednisolone and Azathioprine. I assume there must have been a reason for you to go on to tacrolimus - usually it's when there's an issue with Azathioprine - which may well have been the case.

    2) Can you say what your current/previous doses of meds were? The point of the Prednisolone is to tamp down your immune system to reduce the attack on your liver, the reason for the Tacrolimus is to take some of the weight off the Prednisolone so it can be reduced to the lowest effective level - it's usually something you have to stay on long-term if not permanently.

    3) It would also help if you could post some of your blood results.

    4) If you have PBC or AIH and PBC overlap then they should definitely have told you. Presumably when they told you you had AIH they also told you what the current state of your liver is? Did they tell you you have cirrhosis? Did they do a biopsy?

    5) As for the swelling around the ankles - that's usually a sign of oedema - which is fluid retention. It's a result of the liver not working properly. This is something they should try to address - usually the first thing you need to do is to restrict your intake of salt, as this makes the fluid retention worse - and sometimes that's all that is needed. Have you had any dietary advice?

    I can't say I'd be happy to be in your situation. I would say that firstly you need to get copies of your test results - you're entitled.

    Secondly you need an appointment to see a hepatologist or a gastroenterologist specialising in liver issues. IF your current consultant is one of those then get an appointment to see him or ask for a referral to a different hospital. If you feel your GP will not help you get some of the details I mentioned above and people here will be more than willing to help you make a case or reassure you if your GP is being reasonable.

    Thirdly, you need a clear understanding of

    a) whether you have AIH or AIH + PBC.

    b) The current state of your liver - i.e. the degree of fibrosis (scarring)

    c) Current test results

    d) Which complications you are suffering from - if you have cirrhosis you should be monitored for these..

    Hope that helps as a starting point. Do come back here for help, there are lots of really helpful people who've been through it all.

    Cheers. Keep your chin up.

  • I was started on prednisole 60mg,ursofalk 3 times daily in April 2014. I had a biopsy which was inconclusive and they only came up with the AIH theory as I responded to steroids. Consultants,3 of them,admitted they didn't know what treatment togive me and I ended up on my current meds which are,tacrolimus 0.5mg twice daily,ursofalk twice daily and pred 5 mg daily.

    The ursofalk were a trial and I was told to continue as they were helping,I never had any itching. I have no more procedures since my original biopsy and am told its AIH in absence of them knowing what else it could be,have never been told I have PBC or given any scans or tests.

    I have cut my salt down to roughly 1.5 mg daily,eat well,have never smoked or drank.I don't know what state my liver is in but was initially told I would need a transplant as I was so I'll. I have never seen my test results and feel no one has time for me,thanks so much for your advice

  • Well 60mg of Prednisolone is a very hefty dose so your condition must have been pretty serious.

    AIH is a little bit tricky to diagnose but there are well known paths for diagnosing it so they must have gone down those - once you've ruled out everything else and there's a good response to steroids that can clinch it although biopsy and certain antibodies help.

    I still don't understand from what you've said how you've ended up on Tacrolimus but there must be a good reason - as there should be for the Urso. The good news is that your Prednisolone has tapered down to what would be considered a "maintenance dose" so assuming your blood results are good the treatment has probably been initially successful - as you have responded to the steroid it would seem AIH is the correct diagnosis.

    Biopsies can be difficult to assess and even people who assess them constantly for a living can disagree between themselves as to what 2 biopsies show. In any case you have to deal with the AIH anyway which is what you've been doing.

    If I were in your situation I would;

    1) contact my GP and the PALS (Patient Advice) at the hospital and try to get a complete set of blood results.

    2) Get an appointment with either the GP or the consultant and get some clarity on;

    i) AIH or AIH with PBC?

    ii) Degree of Fibrosis (scarring to the liver) This should be expressed as a score on a scale of scarring. Ask what scaling system and what score. The highest score is usually Cirrhosis (i.e. the scarring is widespread.

    iii) Why are you on Tacrolimus? Was Azathioprine rejected? If so why?

    iv) Exactly what is the Urso for - "helping" is too vague

    v) Discuss with the GP if you should be referred to a more specialist liver unit - this may need to wait until you have answers to the other questions.

    If you don't make any headway with the GP you may want to consider changing.

    If you really don't feel like you're getting anywhere it may be an idea to get someone to help you navigate the GP and the hospital. Based on your meds you may be doing quite well but it's clear based on initial meds that your situation was serious so you need to be kept well informed..

    Best of luck.

  • Thank you so much for your advice,I will try to sort out all the questions you have answered and hopefully I'll get some answers,I really appreciate your time and help. Its good to know I'm not alone,thanks

  • Wanted to thank you for your help,I have managed to get consultants app for October which is just after my next blood test. I will ask all the relevant questions and hopefully get some answers,thanks for giving me the push I needed

  • That's very kind of you and I really appreciate it.

    Best of luck with the appointment, do come back just before and check in with any questions. There are always people wanting to help.


  • Everything MisterX says! Its not normal to be left so much in the dark about your diagnosis and treatment. It will help if you become a) more assertive in asking your GP/consultant for more information/regular checkups and b) if you become an expert patient by educating yourself on both AIH (and PBC just in case) so that you can ask educated questions about your diagnosis and treatment when you do see your GP or specialist.

    Might you be on Urso for itching or because your bilirubin levels are high, rather than anything to do with PBC?

  • I agree with all of the above comments , I was diagnosed in dec 2013 , the longest I've gone without seeing my heptoligist has been 4 months and have only just moved onto 6 weekly blood tests , I started off on 40 mg of prednisone, then started on 100mg of azathioprine as the prednisone dose was gradually reduced , I now take 5 mg prednisolone and 100mg of mercaptopurine , I go to the Leicester royal infirmary,you need answers.

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