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AIH, PBC, AIC, PSC and any other variations .....

(6 Posts)
AuldHeathen Sat 29-Apr-17 18:16:24

I was hoping someone else would start this thread, but here goes. AILD aka Autoimmune liver & bile ducts disease, often associated with other AI conditions like Hashimoto's. If you've got this then you're quite a rare bird and probably know nobody with it, except possibly online. I know there are a few others on MN with AILD as we had a chat about it a few years ago when I was using a different name.

I have AIC (c being for cholangiopathy). It's an overlap syndrome with features of AIH and PBC and with negative ANA. My condition is stable just now. I am on an immunosuppressant called MMF (Mycophenolate Mofetil). MMF is okay. I think I'm just happy it suits me because azathioprine made me very ill.

Other conditions I have include underactive thyroid (Hashimoto's), dry eyes, joint pains, chronic fatigue, at times dreadful brain fog. Also asthma and perennial rhinitis (hay fever but all the year round, not just summer). I also have deafness caused by antibody production, I.e. Autoimmune Ear Disease.

dotdotdotmustdash Sun 21-May-17 18:00:14

Just spotted this. I was found to have AMAs (Anti-Mitochondrial Antibodies) of the subtype Anti-M2. These were first discovered 9 years ago and have been retested a couple of times and are always positive and increasing. My liver functions are tested annually and are still decent enough that I haven't been offered a liver biopsy to confirm PBC, although it's almost certainly in my future. I'm now perimenopausal and it's hard to know what's a PBC symptom and what isn't!

AuldHeathen Mon 22-May-17 20:10:42

Hello there, dot. Nice to meet you! Let's hope your condition doesn't progress. It often doesn't go too far especially if you have a few years of it not changing. Mine did progress about a decade after dx but then mine's more complicated anyway. Some people in the U.K. don't now have a biopsy for straight PBC, as it's reckoned a positive AMA combined with certain liver enzymes rising are definitive. Have you been offered Urso?

I see an error in my 2nd para - I have positive ANA, negative AMA.

dotdotdotmustdash Tue 23-May-17 21:57:30

Hi :-)

My AMAs were discovered almost by accident as I had episodes of severe abdo pain and jaundice that were never fully understood, but appparently not related to PBC. My Gp decided to try every liver test available to see what came up as the liver functions weren't making sense. The AMA came up positive unexpectedly. I did ask for a referral to a Gastro Specialist but I haven't been offered Urso or any treatment at all other than a 'watch and wait' schedule of blood tests. I'm almost 48 now and probably will have positive PB symptoms within the next 10yrs or so. It's a bummer.

AuldHeathen Wed 24-May-17 18:47:04

Mine was dx by accident too. I had a 'severe viral illness' and had bloods done. Came back with borderline hypothyroidism and deranged LFTs. Got sent round and round the houses for a while, and had another baby just as I was due a liver biopsy. Also foxed by negative AMA. It seems c 50% of us have neg ama. So that was postponed till the baby was a year old. That was mid to late 30s, now mid-50s. Originally dx with PSC, then sentence commuted to this overlap thingy. It was latent for so long I began to believe it had passed me by. Then I had an annual review about 5 years ago and it had all flared up. So, repeat biopsy and treatment. It all seems to be under control with mods, though as my recent bloods are within normal parameters.

RubyRoseRing Thu 20-Jul-17 15:18:21

Bumping for ShinyNewUserNameToday.

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