PBC and AIH

[Poppyskittens]

Hi, I was diagnosed earlier this year with both PBC and AIH from blood tests. I then had a biopsy which confirmed but have been told the PBC is not currently active so only being treated for AIH at the moment. From the research I have done it suggests that the PBC will advance if left untreated so my thoughts are that I should still be being treated for this? I have regular calls with my liver nurse but in all honesty she just says your last bloods were good speak to you again in a few weeks. She doesn’t ever ask what symptoms etc. for example for over a year now I’ve had pain in the liver area which again from research I understand to be where the membrane surrounding the liver was stretched and no knowing of this will ever go. Some days the pain is really bad but most days it’s is manageable. I have dry eyes constantly, itchiness, fatigue dizzy spells. When I have mentioned it is brushed aside with a comment well of your at work it can’t be that bad. I’m just wondering what others experiences are. Has anyone else been told PBC not active for it then to come active? How do they know if it has become active?

[Oldbloke1]

Do you get a dry mouth

[Poppyskittens in reply to Oldbloke1]

Sometimes but not regular enough that I have registered it as anything

[Robinson123]

If you have been diagnosed with PBC you should be taking Ursodeoxycholic acid. Please contact the PBC Foundation who will be able to advise you.

[gillrich in reply to Robinson123]

Pbcfoundation.org.uk

[Robinson123 in reply to gillrich]

👍

[Poppyskittens in reply to Robinson123]

Thankyou I will have a look on thier website. I’m currently on steroids and immunosuppressants since diagnosis

[sophiaS1980]

Are you seeing a liver specialist if not that's who you should be seeing, find another doc.

[Poppyskittens in reply to sophiaS1980]

Yes I under a consultant but rarely speak to her it’s the liver nurse that I have my calls with. At no point have I ever seen them face to face. I have mentioned the issues I have but I’m told they are nothing basically