PBC/AIH

[She-66]

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 ?

I wasn’t diagnosed until i had stage 4 cirrhosis… as i had no symptoms , this was picked up from a separate blood test

[witchiegirl]

I too have AIH/PBC (or rather a version of it) and it’s hard to have something so many people know nothing about and children. To answer your question I’d ask my liver doctor, though if your doc’s like mine you’ll get a two word answer and very little other information. I hope you’re okay and your illness is under control.

One of my adult sons has IBD (UC) and deranged liver function. I think I worry about it more than he does to be honest. . I did ask the monosyllabic doctor if I should worry (apparently I shouldn’t as he’s got his own team to consider things). Anyway he’s waiting for a fibroscan and it looks like it’s fatty liver, so not precisely related to my condition. My son has certainly discussed my illness with his specialist, so they know the family history. There’s also a strong history in my mum’s family of autoimmune stuff generally. She had UC too and I have several other AI conditions. The tendency to autoimmune conditions in general runs strongly in families, less so specific illnesses.

[She-66 in reply to witchiegirl]

thanks for your reply … i’ll add the question to my list next time i see my consultant. i am ok thanks … only thing i have is the fatigue so not complaining!

hope your son gets his results soon x

[Researchfreak]

hi she 66. I have PBC and you have to know what is happening to your body so you can take the necessary steps to keep well. Down load the PBC web page and email them for a PBC pack it tells you everything you need to know. There are pod casts from very eminent people especially professor David Jones. He is based at Freeman Hospital Newcastle upon Tyne. He is the best in Europe. You can ask questions and he and other professional s give you straight answers. Are you taking meds , like ursodeoxycholic this is the main frontline med to try to stop liver getting worse. There is no meds for fatigue. with PBC they can only treat the symptoms which in my case is many. You need to eat well and look after yourself. Remember knowledge is power. Keep well. Hope your journey is a smooth one.