Hi all. I have just had a liver biopsy to confirm pbc. But it has come back with a possibility of hepatitis. I have to have a second opinion

[smudger123]

I still have all the symptoms of pbc. Severe fatigue and tiredness. I just wanted to know has anyone had the same happen to them.

[JennerLayne]

Hi Smudger - Hang in there. I know that 'inconclusive' biopsy results are confusing and for me, I just had the 'I know I have something --- so tell me what it is pleeeeeasssseee' attitude. My doc went over the report word by word, and explained that in many cases, there are anomaleys and not every biopsied sample will coordinate with bloodwork. (Think: We know there are fish in the ocean, but not every bucket you drop into the water, pulls up fish).

I was DXd last spring with 'probable PBC' due to my elevated LFTs, high IGM, and positve AMA (in the 80's). There was nothing in my blood pointing to AIH, and everything indicated PBC. The biopsy did show that some bile ducts are missing (probably due to PBC) and the two samples were more in line with AIH -- though the tissues pulled did not directly coincide with my bloodwork. I currently don't have positive ANA which can be indicative of AIH , but had tests showing in the thousands several years ago..The biopsy report directed my doctor to follow 'clinical indications' given there appears to be an overlap. So for now --- I remain mostly asymptomatic, have changed my diet, and my LFTS have dropped into the normal range and remained there for 6 months. My Gastroenterologist assures me (and provided a written biopsy report) that samples showed as 'mild damage / mild infiltration thus far. I continue to wonder about having a second opinion especially since he's holding off on providing URSO and/or a steroid to treat the AIH, however most days I feel 'just okay'. I do battle fatigue (bloodwork continously shows extremely low Vit D, despite taking repeated rounds of 50,000 IUs) but can't help but to wonder if my age (50), working 40+ hours weekly, business travel, and 2 busy children don't play into it.

Please let us know what you find out. I am curious since we have similar challenges.

[doublewhammy]

Hi. I have both. My liver function tests showed that I had aih and pbc. The biopsy results were aih and markings for pbc. No damage to my liver. I started on steroids last july and then added azathioprine back in september. By october my bloods were dropping, by november back to normal. So the medication is doing its job, fingers crossed I can knock it into remission. No urso as yet as all the bloods have stabilised in the normal range.

I am about to give up work - work in a year one class due to constant illness ( immune suppressants and 5 year olds are not a good mix) and the fatigue. Its a lifestyle change which fortunately I am able to do, going to do some study.

The fatigue and joint pain are my big issues, although I am taking calcium and vit d each day. Think I need to push my dtr for a vit d test. My white blood cells are also consistently low but that is probably caused by the azathioprine.

If I could get on top of the joint discomfort and fatigue I would be much happier. I hope this helps, there aren't many of us with the overlap combination. Good luck

[Yvi1960]

Hi Smudger I have AIH and PBC and found the diagnosis hard. I am taking URSO and budesonide which is a steroid as azothiaprine had a detrimental effect on my liver which is according to the consultant unusual. I am well and have found adjusting my diet has helped. I can only repeat hang on in there and managing the fatigue rather than fighting it helps.

[Axl888]

Hi there I have PBC and AIH too. I take URSO for the PBC and Mercaptopurine for the AIH. When I was first diagnosed I wa put on steroids to control the AIH. I was on them for quite a long time and then put on to azathaprine but that didn't suit me very well which is why I take mercaptopurine. Now I am on the meds, I'm feel stable and don't have many symptons. The fatigue sometimes gets to me at the end of the day but I am able to work full time, although I work in a school and get a holiday on a regular basis which I think helps me. Not sure I would cope with only 4 or 5 weeks holiday per year. Best Wishes

[ZiggyBean]

Hi, I have a recent diagnod is of AIH and PBC overlap. Eating healthy, unprocessed foods is making a huge difference in how I feel. If I eat something crappy my body completely reacts. Also have found a sublingual b complex vitamin to be helpful

[janey_babs]

Hiya I was slightly reversed in that my bloods showed aih but my biopsy said pbc. The eventually gave me a diagnosis of overlap syndrome....I have both. My fatigue comes and goes but with treatment I live an ordinary life. It's hard but please don't stress.

[POZY]

Hi smudger123. I have that diagnosis. Pbc and hep c. I was admitted to hospital due to vomiting and no energy and few other symptoms and they ran it seemed like a million test then a biopsy and found both. I am on Urso and waiting for a new treatment for the hep c. But I'm positive eating healthy and still working full time.

[witchiegirl]

Of course, sadly, severe fatigue can be a feature of either of those conditions. In fact it's a feature of many liver problems. I had a mixed picture too. My first biopsy, around 15 years ago, suggested another autoimmune disease (PSC). I was then fairly free of symptoms.Then I moved and a different consultant reviewed things and reckoned I had 'autoimmune cholangiopathy' (fairly rare - even more than PBC!) which is a kind of overlap with features of PBC and AIH but with negative AMA. I am being treated for the inflammation side of things - with steroids and immunosuppressants. Another biopsy last year showed some damage. My fatigue is dreadful much of the time.

[Alley27]

Hi, I have AIH/PBC overlap as well and the fatigue and joint pain are a huge problem for me. I had my first biopsy 2 years ago now but have not had one since I was fortunate that there was no damage at the time, but I am not sure if there is any change.

I hope I can get on top of these by August because I am going to be a grandma. I am going to see my Gp this week to see about getting a GP referral to the gym. I need to get me back.

xxconniefused