Diagnosis of seronegative hepatitis & now told it is AIH

[Jahida]

Hello all, I have hardly been active in this forum as my father passed away just over a month ago. Things have been hard.

I finally made it to my clinic today as I have had to cancel twice because of my dad's ill health.

The last time I saw the consultant, was in august. I went in today expecting the usual but suddenly I get told that my last liver failed due to AIH. I was quite taken aback as the biopsy before the transplant was negative for AIH and so was the tests the conducted on the liver after the transplant. I couldn't even think of what to ask because they said I might need to be back on steroids.

They determined this through blood tests the last time I went in. So today they took another set of blood works to check for it again. I'm so confused and I forgot to ask whether that means I still have AIH? I think I'll have to call them to find out more as all these questions have come to mind after the appointment. Does it mean maybe another transplant in the future or poor health?

Thanks for shedding some light on this!

[AyrshireK]

Hi Jahida, sorry to hear of the loss of your father, you've had a lot to contend with.

If you do have Auto-Immune Hepatitis (AIH), then they should be able to start treating you to prevent it from attacking your new liver - yes if the inflammation is active then you might need to go onto steroids in the first instance to tamp it down. However, post transplant your immune suppressants might need to be looked at to stop both the rejection issues plus any attack by your immune system on your new liver. Many folks live with controlled AIH for many, many years without it causing cirrhosis or a need for transplant.

By the fact you have already had a transplant I assume your earlier AIH was never picked up or treated effectively and therefore you reached advanced liver damage without AIH being dealt with.

My hubby has cirrhosis due to AIH - he has never shown the typical AIH in his biopsies - they've been inconclusive. They just came up with that diagnosis based on the absence of any other obvious cause and the presence of certain anti-bodies though they've always said his AIH is burned out - done it's damage then either gone dormant or stopped. He is on 5mg prednisolone daily as a maintainance dose to keep any recurrance of AIH in check.

Obviously you need to seek clarification from your doctor, it's a pity your head was in another place today to hear this news. Perhaps a telephone call to your transplant co-ordinator for a chat might help clarify matters or your GP should be in receipt of correspondence from your specialist so you could perhaps chat with them to clarify the next plan of action etc.

All the best to you going forward, hopefully they'll get this all cleared up for you and you can get on with living life afresh - albeit perhaps with some additional med or some med tweaking.

Katie xx

[Jahida in reply to AyrshireK]

Thank you Katie. That's a lot of helpful information. I am just shocked how AIH was never detected before even prior to the transplant and even after it? How can it suddenly come to light now when I even have letters saying the diagnosis was seronegative hepatitis. I just feel a bit down now and worried about the steroids too and the weight gain etc. I had hair loss with it which was quite hard to deal with.

Thank you

[RodeoJoe]

That's weird isn't it? You would think it would have been picked up earlier. But I suppose better to know now than go untreated but I do understand your shock.

I'd really appreciate you coming back and letting us know what they say at your next appointment. The cause of my liver disease was never found, so my question is, is it possible to be tested and get negative results for things like AIH but actually have them?

[Jahida in reply to RodeoJoe]

Hi Rodeojoe, I had my appt today so I thought I'd come back and tell you what I discussed regarding AIH. I asked the consultant how come AIH was never picked up through biopsy and through the liver check they did once they took out my old liver. He said sometimes what happens is that there is a lot going on. AIH doesn't always present itself easily. The biopsy showed all the tests to be negative. He said usually what happens is when you go through liver failure is your liver ends up being cirrhotic whilst it is failing but with me, my liver showed a lot of inflammation and some scars but not cirhossis. Basically my liver just stopped working he said. Also because of so much happening the AIH can get burnt out by the time you get to them.

He said that when they did some blood tests in august, some of them showed antibodies of that similar to someone with AIH. However I do not have AIH anymore he said which is a good thing.

I know it is quite confusing to be honest but I hope I explained OK.

They will not put me on steroids yet as my kidneys are nearly packed in. More blood works and he's hoping I can have a CT scan in a few weeks and then we will see where to go from there!

Thanks