Just a quick question to all you unfortunates with aih and pbc how was the aih diagnosed?

[littlemo]

Just wondered to cut out a lot of trawling through all archives from each person with the two conditions, as well as how the aih was diagnosed where in world are you from i.e. uk/america etc, just curious I'm from N.Ireland and I have never heard of anyone I know from here with pbc also being tested for aih.

[Axl888]

I was first diagnosed with pbc from blood tests and the consultant suspected I also had AIH ... he said I needed a liver biopsy .... the biopsy confirmed I also had AIH.

[bwswave]

I was also diagnosed from having a liver biopsy 10 years ago, I was put on high doses of steroids.

Its rare to have AIH, and with PBC too, even rarer. My doctor told me that I was probably the only one an area of about 15 miles radius from where I live, and about 2,000 in the uk. I felt so alone, and no-one around me could understand, but, after a couple of years with this, I got used to it. I have found since that 1 other person with both AIH/PBC does live within 5 miles from me, whom I met at one of my regular visits to see my consultant at the hospital.

I wish you well.

[crundalite]

Iwas first diagnosed with PBC almost 20 years ago . Diagnosis was sought as a result of abnormal liver function tests and was based on biopsy. I am probably going to have to have another liver biopsy to confirm AIH (I see my consultant next week) The possibility of AIH has arisen as a result of recent bloods, thrombocytopaenia-(inadedquate blood clotting cells) which leads to bruising easily, and, at times, excessive tiredness. I live in West Wales.

[exy21]

I was very ill and had lost a lot of weight quickly. Had been ill for years but got misdiagnosed with m.e., really they hadn't a clue and I wrongly assumed they had ruled out everything out. Blood test results got me an emergency app with a liver specialist who said I know what you have but would like a biopsy to confirm. So had that, not pleasant. He said yes you have aih but also pbc.

Also since have been diagnosed with crest syndrome and sjogrens. All auto immune.

I'm Edinburgh

[Jtxx]

I was diagnosed with AIH/PBC overlap syndrome at the end of the summer last year. LFT's were high and I was positive for SMA antibodies (diagnostics for AIH). I also had a liver ultrasound which showed up abnormalities. I had a liver biopsy to confirm which showed up PBC even although I am negative for AMA antibodies (diagnostic for PBC). Only 5% of patients with PBC are AMA negative! I live on Scotland and I am 47. I am actually meeting a lady who lives about an hour away from me next week. It will be good to talk to someone who has the same condition. Hope this information helps. X

[Tumbleweed41]

Hi Littlemo -

I'm a lot like Jtxx in that I was diagnosed with AIH/PBC overlap syndrome, but a bit over 5 years ago. My LFTs were "off the chart" as we say here, I was ANA (but not AMA) positive. I live in the Midwest of the USA (thank you Jesus that I don't live on the East Coast) but when diagnosed I was living on the West coast in Oregon. My Specialist at the time said that the combo of AIH/PBC was very rare but he did have 3 patients with it. We were the subject of a lot of the Doctors' weekly meetings. lol. Dr. confirmed diagnosis with 12 !! vials of blood and a liver biopsy. He IMMEDIATELY had me vaccinated for Hep. A and B and ordered me to get a flu shot. - which I did for the first 2 years. -:). I am now soon to be 71yrs. -:). ga

[Gra79]

Hi littlemo,

I live in Kildare, Ireland. I am 32 & have AIH PBC! I am stable last few years, was dx 8yrs ago was dx via Bloods, scans & biopsy. I am on steroids, was on high doses for a while and i am on immunosuppressants. Presented with weight loss, bruising, itching, fatigue & jaundice. I am overall well, manage fatigue fairly well and have 2 healthy boys 3 & 2. A diagnosis of this is difficult but managable with a positive attitude, good support and appropiate treatment & monitoring.

I think you will need a biopsy for a baseline measure and confirmation of diagnosis.

There is a support group in Dublin - once a month contact Marian 00353 87 2930789 for details,

Chat soon

Grainne

[Junolee in reply to Gra79]

Hi Grainne, I am in Co. Kildare. Originally from and work in Dublin. Diagnosed end May. Spent 3 weeks in Tallaght Hospital and attend gastro clinic there every 6 weeks or so, bloods ever two weeks while they are sorting my meds. They are brilliant. Jaundice & very low iron my only symphtoms initially. Getting used to it all. Time consuming lol...

[littlemo]

Thank you all very much for that I just thought that as my lfts have never been normal (apart from the bilirubin and albumen which I know are the ones the dr's watch most closely to monitor the progression of pbc (which I had diagnosed in 2002 after having horrendous itch, fatigue and joint pains for the year prior to that) if in fact may have aih also. I have never had a biopsy done as my consultant felt the positive ama was sufficient in diagnosing pbc. I have been on urso for the last 10, almost 11 yrs now since diagnosis but as say majority of my lfts have never been normal or even halved like I have read on here a lot of pbc sufferers found after starting on urso. My ranges are usually 3-4 times what the top reading of the range should be. I have recently stopped the urso (about 10 weeks now and am awaiting copy of my last lft to see what effect this has had. Am bit nervous about being off it (despite feeling better and the itch now being back at tolerable levels) as only time off it before was when pregnant about 6yrs ago and felt great at start as do now but after about 3 months off it my liver started to fail and I almost ended up being put urgently on the transplant list but funnily enoughafter treatment to help my blood clotting and being put back on the urso during 2nd trimester of pregnancy my liver settled and readings of lfts went back to what is normal for me and have stayed more or less the same ever since. Think lot more research needed on use of urso in pbc patients. P.s. Hoping I dont havethe aih also as the pbc alone is quite enough. Take care of you and yours and thanks again.

[Gra79]

Let us know how you get on - hope you dont have AIH, steroids are tx and they have nasty side effects esp weight gain. Re URSO - was (and still am) on 2000mg from start to finish on both pregnancies, it can be taken in pregnancy for cholestatis just in case you were planning on more babies ;-0

Remember you can ask for a second opinion if you are unsure of your treatment/diagnosis. Need to have correct dx & tx to prolong the life of your liver

[Junolee in reply to Gra79]

Hi, just on the steroids, have been on them since diagnosed in May, weening off now and just started azathioprine. Did get a bit of a moon face when on the higher steroid dose but put in no weight at all. I seem to be eating constantly, granted mostly low fat stuff, but doc says liver is using so much energy just to function I'm burning up all the extra food quickly. Still will be thankful to be off the steroids, they seem to have done their job though. Hope every one keeps well. xx

[littlemo]

Thanks Gran 79 and Junolee think after reading all the replies that I don't have aih but will pose the question to my consultant when seee him next in december. I will certainly keep you all posted on how I get on being off the urso. Bye for now take care of you and yours:-).

[TracyLou]

Hi, I'm from the UK, but was diagnosed in Denmark when I lived there for a year. I had a biopsy and they first said I had AIH, I didn't respond well to azathioprine,

I got a second opinion. I had more blood tests then they said I had crossover AIH with PBC, They took me off azathioprine and put me on Urso and my blood tests after 3 years were a lot better. I still have crossover but they are just treating the PBC.

[littlemo]

Hi TracyLou thanks for that will discuss the possibility of a.i.h. crossover with my consultant when see him in deember. I think I may be one of the lucky (!) ones with just the pbc, going by all have read from others on here who unfortunately have the two like yourself. bfn take care of you and yours

[EAJSWW]

I have AIH / PBC overlap and was diagnosed with pbc 11yrs ago and then AIH after biopsy about 8 yrs ago.

I have a first cousin who has AIH too but no PBC.

[littlemo]

Hi again everyone I have posted a question recently to all folks like your good selves with PBC AIH crossover as my consultant thinks now I may have this too which has shocked me but he is sending me for a biopsy to confirm or rule the AIH out. He is not sure if it is the progression of PBC or the developement of AIH that is making my bilirubin rise so need the biopsy (which am dreading!) to find out. Hoping it is just the PBC as getting married next yr and just recently bought the dress and if had to go on steroids prob end up putting on wgt and having to buy a bigger dress!!! Just have to wait and see I suppose. Did you all have weight loss with the AIH? I cant say I have had any signiicant wgt loss only time I did was during my last pregnancy when I went into a degree of liver failure but I felt this was just down to my liver being in overdrive and burning up all the calories I was taking very quickly. Any replies be greatly appreciated hope you are all keeping well. Bfn. x

[Alley27]

Hi I have both AIH and PBC....mine was diagnosed by bloods after rushing me in to hospital with jaundice. They were diagnosed at the same time. My AIH was confirmed by liver biopsy. I live in Pontefract and there is no one else I know of near to me who has the overlap.

xx conniefused