Liver biopsy result: Autoimmune Cholangitis

[witchiegirl]

So it would seem I am a bit of a rare bird and there's not a huge amount of research to show how to treat the above. Happily, the biopsy showed no cirrhosis but there is some scarring/fibrosis mainly around the bile ducts, also in the liver itself. My GP (last week) was quite upbeat about it - the no cirrhosis thing which obviously is very good - but I found the specialist (this week) quite non-committal. I asked how the disease might progress and he wouldn't say much beyond starting me on steroids now (now begun on 40 mgs Prednisolone), to reduce to 30 in 2 weeks if LFTs improve, and he'll see me again in 6 weeks and consider adding azathioprine then. I suppose I'm one of those annoying people that likes answers, and there probably are no answers just now. So really they are treating the AIH-like bit of it as there isn't an effective treatment for the other/cholangio bit, except a transplant, and I clearly don't need that at present. Which is good of course.

I'd like to talk to someone who has the same kind of combination. I suppose I want to compare notes on what has been said, on treatment options (if there are any?!), and generally feel i'm not on my own here .... Is there a 'club' that will take people like me as a member?!! I did find a PBC support forum a few weeks ago, but I don't have PBC although, I think, there are some parallels. If I've understood it all correctly which possibly i have not .....

One thing is I feel quite bright and perky with the steroids - i may manage to get lots of 'extra' housework done in the coming weeks. The family will find this hard to take, I expect, but we may end up with a cleaner and tidier home. Usually I am on one (or no!) cylinder by this time of night. It is odd but not utterly unwelcome as I have been so tired of late. Does this 'steroid high' settle once you get used to the high dose? or is it all dose related and will only ease when the dose is reduced?

[findasolution]

I was going to suggest you have a look on the forum on the AIH Support Group site autoimmunehepatitis.co.uk but having just viewed that site myself it appears you may have already discovered it. However if you are not the originator of todays posting on the forum may I suggest you have a look at the site which contains questions answers and experiences etc dating back over many years and where you may possibly find what you are looking. for.

[witchiegirl]

Yep, only one witchiegirl! I think I've reached the stage where there are too many passwords and usernames in my world, and the world of liver disease is fairly small anyway so it seemed best to use the same name. Alas though, i've tied myself in knots by having slightly different passwords so signing in is very laborious!

Thanks anyway for your reply, findasolution. As i said elsewhere, I think i'm just looking for 'good' news and should stop reading the same stuff over again, as the conclusions are roughly the same. I just need to swallow the pills and get on with my life, or what's left of the old one from before all this happened.

Problem is really that I'm in a pickle over paid work or lack of it (combined with great fatigue at times, often), and part of me thinks if my days are numbered (nothing likea bit of optimism?!) I should just not fret about going back to what i did before (I am not fit anyway at present as have shoulder problem and physio has said I'm not fit for work). I have decided to wait 6 months, try to keep/get as fit as poss, and see where things are re liver and joints then. There's also a question over working in health care (I was a nurse) on long term immunosuppressants. I am getting mixed messages on that from my own medical team.

So, as you can see, i'm running in circles trying to get answers that aren't necessarily to be found. And my shoulder hurts so no opp at present to start a new post about careers and liver disease .....

[janey_babs]

I have aih and pbc. The c in pbc has changed to cholangitis so I am. Bit confused as to why you dont think you have pbc. I got diagnosed in 2010 following a year of tests and finally a biopsy. My steroid high didn't stop until I was down to about 10mg. I was like a Duracell bunny on speed.

I used the extra energy to exercise like mad to keep fitness up and to try and avoid weight gain.

I would join the pbc foundation as they give you lots of useful info and have a help line etc.