Those of you with AIH/PBC overlap ....

[witchiegirl]

what have you ben told by specialists about the possible progression of disease? And, if you are on steroid and immunosuppressant treatment, did anyone explain why not urso? And how often do you get bloods checked once on stable dose of whatever? Just interested in anything relevant really as I've been told almost nothing.

[sillybilly]

Hi witchiegirl

I have Ulcerative Colitis AIH/ PBC overlap . I also have underactive thyroid . I am on steriods and immunosuppressant treatment, my consultant has told me nothing and not even mentioned urso . My bloods where done every 2 weeks to start with , then every 3 months . I saw him in July and he said he does not want to see me for a year . In the copy of the letter he sent to my doctor he put my diagnoses done as Ulcerative colitis and possibly AIH/PBC overlap , I really don't know what is going on and he says nothing when I do see him . Sorry not much help , I really dread seeing him and when I asked my GP what is going on he said oh don't worry you are just a rare case . What the hell does that mean , so to waffle on . Pls if you do get any more info I would be glad to hear it . Take care x

[sillybilly]

Meant to say sorry to waffle on xxx

[JennerLayne]

I haven't been directed to do anything just yet. My bloodwork in April indicated positive AMA, high IGM and IGG pointing to PBC and there was nothing indicating possible AIH. I had a liver biopsy in May which indicated mostly AIH, but there was some damage to the bile ducts indicative of PBC. My gastroenterologist asked me to go on a Gluten Free diet and monitored by bloodwork monthly, watching the elevated ALT/ALT drop down into the normal range (the best it has been in years!) For now, he won't start medication until the liver enzymes begin to rise or I show ALP out of the normal range. I've thought about a second opinion, but so far I don't itch, the fatigue is slightly better and I am eating mostly 'whole foods'.

[Jtxx]

I have AIH-PBC overlap syndrome. Diagnosed over 2 years ago.

My undersatnding is that the steroids (for AIH) are used initially to get your LFT's under control ,which in turn will bring down the inflammation in the liver. Autoimmune suppressants are then introduced in order to suppresss your immune system so that your white blood cells will stop attacking the liver and keep the LFTs at a normal level. This should mean that the liver does not get inflammed again and damaged further and this in turn should stop cirrhosis. If you already have cirrhosis it should slow down the progression of the deterioration, as does the Urso (for PBC)

Once you have achieved normal LFT's you will be weaned off the steroids and continue on the autoimmune supressants for at least 2 years.

I am on Urso for the PBC and Azathioprine for the AiH. Previously I was on Budenofalk (steroid).

If your doctor is not wanting to put you on steroids then your LFT's must be normal. You need to ask her what your counts are.

- ALT should be about 35

- AST should be about 32 (as far as I know)

Other questions to ask are:-

1. What antibodies do you have ( typically) - positive SMA for AIH

- positive AMA for PBC

Although this is not always the case. I only have positive SMA but my biopsy came back with PBC but my bloods are indicitive of AIH.

2. Have you had a liver biopsy, if so ask if you have cirrhosis?

I have been on two different courses of steroids, Prednisolone and Budenofalk. I have found that the Budenofalk has given me a lot less side effects than the Prednisolone but you can only take the Budenofalk if you do not have cirrhosis of the liver!

3. Ask what is driving your prognosis?

My consultant told me that AIH is more serious than PBC because of the potential effects on my liver if my LFT's are not under control.

I do hope this helps. It is so good to hear that I am not the only one going through this and if I can help someone else by talking about my experience I will. I know we are alll different but hopefully if helps clarify some things for you.

If you have the time there are lots of good questions & answers here going back a couple of years.

I go to see my consultant every 6 month and I see him in a couple of weeks. Hopefully he will start to wean me off my Azathioprine to see if I can stay in remission, with the AIH, without them. Only time & bloods will tell.

As far as the PBC is concerned I am on Urso for life and I remember the consultant saying that I will mostly probably die of something unrelated to PBC but will have it for life.

Good Luck.

[Hidden in reply to Jtxx]

Hello Jtxx.

I only have PBC but on reading early part of your reply on here, out of interest are your white blood cell count as part of the FBC lower than what is considered normal, normal or higher than normal range? Goes down as lymphocytes on the FBC as I understand.

Mine usually are slightly lower than normal each time.

[doublewhammy in reply to Jtxx]

Consultant said the same regarding PBC, and that aih is the more aggressive. Cant wait to not have blood tests every two weeks as am feeling like a punchbag.

[Jtxx]

As a result of taking Azathioprine for the AIH my WBC is always pretty low - around half the lower range (one of the side effects of Aza). They keep a close eye on it with 8 weekly bloods. The results always come back marked "abnormal" from the lab but as they know why this is they seem ok with this. I have to watch though if I develop a sore throat as this can be a sign of an infection. I'm doing fine. Hope you ok. X

[TracyLou]

My Story is a bit complicated. I was first diagnosed with AIH in Denmark, and they prescribed Corticosteroids. When I got back to the UK I was given Azathioprine. I felt much worse and decided to get a second opinion at another hospital where I now am treated for PBC.

Although I have been diagnosed with the overlap, my consultant has decided to treat my as PBC alone, as I did not respond to Azathioprine. As of progression he said it was difficult to say because everyone is different. I'm not too bothered now. I try to get by with the symptoms and now if I feel really ill or my blood tests goes downhill then I would get concerned. Hope everything is ok xx

[witchiegirl]

Thanks for all those replies. It's made things a little clearer, I think! I have a dx of autoimmune cholangiopathy, which I understand is like PBC/AIH overlap but with negative AMA. I am on treatment at present, a reducing dose of steroids and an immunosuppressant - Aza and its cousin, Mercaptopurine, made me very ill so I am on Mycophenolate Mofetil (MMF) which seems to be okay for me. Nobody this time round has said about Urso. I was on it years ago, but it was stopped, cannot recall why exactly. A biopsy earlier in the year showed some fibrotic changes, in liver and bile duct, and inflammation.

I saw a different consultant this week, which threw me a bit. I didn't ask her anything at all really because I've become used to my questions not being answered! What the previous consultant does is change the subject if I ask something he doesn't want to answer. eg. I have asked in the past year, a couple of times, Will these drugs stop the disease from progressing? How do you envisage my disease being in, say, 10 years? Do you think I'll eventually need a transplant? Each time he has refused to answer. It's very frustrating. He hasn't even said 'We can't tell, bladdy bla'. He just completely stonewalls me, changes the subject. This attitude is feeding my paranioa at times. As I think - only sometimes mind, I am more positive today! - his refusal to talk means I'm a hopeless case. After seeing the different dr this week, I was feeling frustrated that I didn't ask anything as I think she may have talked a bit more. I know they can't really predict exactly what will happen, but they do surely have more idea than most of us.

I think i'll go to the GP and ask there. Then hopefully it will be the new consultant again next time, and I'll be less flummoxed. That's not for 3 months though. aargh!

[MrsworryGuts]

I made an appointment with my GP for him to explain to me about PBC. He was really helpful and put my mind at ease, I could get no info from my Gastroenterologist as everything I put down to PBC he just said I have not heard of that ??? Being a symptom