Experiences with

Autoimmune hepatitis (AIH)

When both diseases are present this is called 'AIH overlap'. One can have 100% PBC and move to 100% AIH and back again. In the past many were labelled as having AIH when they've really had a more aggressive form of PBC. They have very similar AIH- like features.

I was diagnosed with AIH in 2012 and a few years later crossover with PBC was confirmed. I also have alpha 1 antitrypsin deficiency. Triple whammy! I’ve been on Azathioprine and Urso for many years as I was diagnosed early.

I have AIH/PBC and Barrett’s oesophagus I have been in remission for about 18months , interested to hear how long anyone else has stayed in remission?

I have PBC /AIH overlap, cirrhosis and Osteoporosis. Thanks

Does anyone out there no more about whether antihistamines have been tried as a treatment for PBC or AIH?

hi I have pbc/aih stage 4 cirrhosis. On the usual meds ….. Go on my hols at the end of the month to Turkey , my feet always puff up when I’m there … are water tablets ok to take to help with the puffiness ?

Hi I habe PBC crossovered with AiH . I understand it’s not hereditary but can run in families . Nobody else in my family has this (that I know of ) should my siblings / children go and get their bloods done ?

Hi I habe PBC crossovered with AiH . I understand it’s not hereditary but can run in families . Nobody else in my family has this (that I know of ) should my siblings / children go and get their bloods done ?

HI just had a fibroscan as suspected AIH had high LFT and strong positive SMA the fibroscan wasn't a clear scan really and ended up getting the best out of a 5 attempts. Result shown 5.9 does any one know what this means please ?

I am intolerant of the drugs azathioprine and mycophenolate, as I am intolerant of drugs containing thiopurines. I am 72 and have been told I am too old for tacrolimus. I am currently on prednisone. I want to come of these as I feel really unwell with various symptoms. What treatments are there left

hi I have pbc/aih and on the usual meds . Just wondering if anyone has any trouble with their joints . I am getting so much grief from my knees . Had one sore one but then turned in bed last night and simply twisted the other one and am proper hobbling today !

I've been diagnosed with AIH and I'm currently on steroids to try and bring my deranged numbers down which is working. I started in 60mg and down to 40mg daily with no current talk of dexreasing. I'm also on prograf and this will be for life. I've such bad insomnia and chronic fatigue.

By the way I have IBS AIH/ PBC and Barrett’s oesphagus. Thanks

58, diagnosed w/ AIH IN 2002 & multi auto-immune (Crohn’s, Thyroid, Arthritis, Neuropathy +++)and then added PBC overlap officially in 2020, same time as Prednisone stopped controlling AIH. Added Irso for PBC and Tacrolimus as salvage treatment for AIH.

Diagnosed with AIH in 2018, only real symptom was terrible fatigue. Fibrosis 5-6 but compensated. On Mycophenolate still, pred for 4 years, now discontinued. Generally well until 3weeks ago, I got a kidney infection after a UTI. One IV dose of antibiotics and 3 oral doses later.

What i’m trying to say is does anyone with AIH have any experience with the Mirena coil that can reassure me that everything is okay. Thank you, Maddy

Hi My wife has AIH B of the liver and is taking 3mg of corticosteroids per day. We have noticed a decline in memory over the past few years we have visited the doctors no sign of Alzheimer’s or Dementia they say. Just wondering if this is common with the condition or medication. Many thanks

Hi I have lived with this condition for almost 20 years and been on Urso and Azathioprine medication for most of this time. Bezalip added about 5 years ago. I have always considered myself really lucky as l have no real symptoms that others complain of. The past few days l have noticed that l am not

I have AIH and need a back tooth extracted. Has anyone with AIH had this done and did it have to be in hospital ?

I have no inflammation markers on my bloods but I do on my antibodies and smooth muscle blood counts which his why it's suspected AIH.