Does anyone on here have PBC AIH overlap? And when you have the AIH are you always jaundiced?

[littlemo]

I attended Hepatology last week and my consultant has informed me that he thinks I may have PBC AIH overlap as my Bilirubin has been rising steadily for few months now. So I am now wondering if I do in fact have AIHand if I have had it all along as the symptoms are very similar to PBC in that it lists itch, joint pain and fatigue which I had all of when I was diagnosed. However I didnt have weight loss or jaundice at that point. Only other time was jaundiced apart from now was when I was pregnant back in 2006-7 when my liver went into a degree of failure and I lost lot of weight during the pregnancy but when I was put back on the Urso( a drug for PBC) as far as I know the Bilirubin settled again and once I had my little boy I did manage to put weight on again. So I am wondering if I do have AIH would the Bilirubin be high all the time if not on treatment for AIH? I am hoping that the consultants other theory is the right one in that the rising Bilirubin could just be a progression of the PBC. I am getting married next yr and have just recently bought my wedding dress so would hate to have to go on steroids and possibly put on lot of weight. Equally though do not want to be walking down the isle the colour of a banana!!! Any info would be greatly appreciated. Hope you are all keeping well.

[Bolly]

Gosh you have a lot to deal with. The only part I can answer is no you don't always have jaundice with AIH. Its usually too much bilirubin that causes the jaundice so your medics need to deal with that. As PBC is a problem with the bile ducts I would have thought it more likely any jaundice is a PBC complication rather than the autoimmune. AIH causes general liver inflammation and damage, not just bile problems. Jaundice during pregnancy (as you know) is usually caused by a bile build up in the gallbladder because of pressure in the belly area during pregnancy, but you have had a rough deal having PBC not just jaundice in pregnancy. Is this a new diagnosis of both, or just the PBC bit?

[littlemo in reply to Bolly]

Hi Bolly thanks for the reply. I have had PBC symptoms since 2001 but only diagnosed in 2002. However I managed to get on with life ok completing a diploma full time and a degree part-time and working since being diagnosed. I am one of those "stubborn" people in life who does not lie under things I just pick myself up shake myself down and get on with it. It was just at my last apt few weeks ago that consultant raised the possibility that I may also have AIH going by LFTS this past while which is why he wants to do the biopsy to see if it is simply progression of the PBC or an overlap with AIH that is causing the bilirubin to rise. When u were suspected of having AIH did they do a biopsy pretty quickly? I am waiting on an apt but then it is only over 2 weeks since my apt.

[witchiegirl]

I've had this combination for some years and have never been jaundiced. I keep forgetting to ask for my bilirubin levels as I've begun with a vague itch recently, but clearly it isn't too bad. Yet!

My most recent biopsy was done almost a year after this flare up came to light. While I waited I had various scans. I think it was 2-3 months between the specialist saying he wanted a biopsy and having it done. I imagine much depends on the area you are in. I am in Scotland, the middle bit. Sort of!

[littlemo in reply to witchiegirl]

Thanks for reply got a call to say there was a place for me to have a a biopsy this friday not looking forward to it but at least will know sooner what state liver is in and if I DO HAVE AIH also, hopefully NOT! BFN X

[Hidden in reply to littlemo]

hello, I hope you don’t mind me asking if you have an autoimmune condition that is the suspected cause of AIH.?

I have a chronic AI condition of rheumatoid type and am now being tested for AIP and AIH.

THANKS IN ADVANCE OF YOUR REPLY.

[AyrshireK in reply to Hidden]

When you have an over active immune system which is what an auto immune condition is it doesn't just limit itself to attacking one body system which is when you can have multiple AI conditions at the same time.

Auto Immune Hepatitis is when the immune system fails to identify your own liver and thereby starts to attack liver cells.

My hubby has cirrhosis due to what has now been labelled burned out auto immune hepatitis - he had a fairly rare presentation in NEVER having any symptoms of any auto immune condition but it was oviously quietly attacking him away at some point and his only came to light after he suffered decompensated cirrhosis symptoms and could have passed away due to a massive variceal bleed.

Katie

[Hidden in reply to AyrshireK]

thank you for your informative reply, you are very well informed for sadly obvious reasons and I appreciate you taking the time to share it here.

Considering your reply I’m beginning to doubt that I will be diagnosed with AIH (which is good news) and in my humble lay opinion my symptoms are more akin to gallbladder issues.

Thsnks again.

[Bolly]

Hi littlemo. Good luck with the biopsy and hope it gives you some answers. Have you had one before? Not something we ever look forward to, I agree, but as long as you take things easy for a few days after should be ok. No dusting yourself down and carrying on as normal as you might like to, take things gently for a while after the biopsy!

[witchiegirl]

Good luck for Friday, then, little mo. Yes, do take it easy afterwards.

[RebeccaM]

Hi I'm 19 and have been recently diagnosed with pbc and aih. I dont but i have always been jaundice. Im only on ursofalk right now until my specialist examines my liver properly seeing how good or bad it is. Good news though ive been on the tablets for about 2 weeks and now my eyes are white again and skin ^^ yay!!!

[Hidden in reply to RebeccaM]

may I ask what autoimmune condition(S) you have that caused (?) your AIH.?