Anyone else with auto-immune hepatitis concurrent with PBC?

[crundalite]

[Axl888]

Hi there

I have PBC and AIH too. I take URSO for the PBC and mercaptopurine for the AIH. I had to take steroids when I was first diagnosed and then they put me on azathaprine but I couldn't get on with that hence the mercaptopurine. I was diagnosed with both in September 2009 - just over 3 years ago. I am quite stable at the moment and don''t suffer too many symptons, except for tiredness.

[crundalite in reply to Axl888]

Thanks for this-after 20 years of PBC during which I have led a full and fairly active life-I am having problems getting to grips with something that seems more frightening in some respects! Whilst it has not been officially defined as yet the itching drives me potty at times and tiredness-mostly down to poor sleep I think is a regtular occurence. I suppose I will have to have that liver biopsy!

[pomice]

I find this "interesting" as I have had blood tests and a biopsy in 2009. Since I do not have the cirrhosis YET my Doctor describes my disease as AIH which when the cirrhosis begins will be described as PBC. I had to clarify this as I wanted to get travel insurance and declared liver disease but NOT cirrhosis. I take URSO which has normalized blood tests and I have no other symptoms.

[sillybilly]

Hi there , I have AIH and PBC overlap syndrome. only diagnosed at the end of July so its still new and scary. On steriods and azathaprine . my consultant is not the most friendly of people so bit scared to ask to much. went to my gp for something else and after having loads of bloods and being diagnosed with Ulcerative colitis , my gp then called me back and said i have AIH and PBC overlap syndrome. i have not had a biopsy and my LFTs are normalised .and i do feel quite well , all be it half scared to death. also been wondering about travel insurance. really feel i need to get away my husband was ill all over christmas and new year , then my son got attacked by a dog . that same weekend my younger sister died of a heart very unexpected . and now i have been told i have all this new things. must say i am still at the feeling sorry for myself stage but trying to stay positive, think the hoilday will do us all good . sorry to rant on xx

[crundalite in reply to sillybilly]

You have been having a hard time of it and I hope you get your trip away. If it is any help I was diagnosed with PBC almost 20 years ago and have had a full and active life workinh in nursing till I was 60. Steroids do not appeal but when needs must! As I understand matters a liver biopsy is the only way to ascertain whether or not one has AIH, along with blood tests. I could well be wrong but if anyone knows of another way please let me know.

[sillybilly in reply to crundalite]

Hi I have also been in nursing for 20 yrs . I was going to have a biopsy but because I started on steriods for the colitis my consultant said it was not worth having it done ( his word not mine) I am finding it quite hard to get my head round all this really. And everyone keeps telling me I look so well . Ahhhhh

[crundalite in reply to sillybilly]

Looking well goes with the condition. It's not so good when you feel awful! Otherwisw it has advantages. Don;t nee to spen any money on fake tan!

[exy21]

Yes you can get insurance just declare everything. I managed to get a years insurance for under a £100. I have aih/pbc. I take azathioprine for aih and questran for itch as didn't get on with any others meds. Also had to take steroids when first diagnosed as was so ill. Have a break it does help to get away from the norm.

[sillybilly in reply to exy21]

Hi could you pls tell me who you got insurance with . Thanks

[sillybilly in reply to exy21]

Sorry I read somewhere that if you take azathioprine you need to stay out of the sun . So no wine with dinner , no sunshine . And watch what you eat . Anything else I should know .

[exy21]

Flexicover direct. Haven't heard that about sun! My specialist always says I'm better in the sun. Less itching, more energy and a break away gives you that a break.

[Jtxx]

Just tried to get a yearly quote for worldwide with Flexicover but they quoted me £495 when I input PBC! However only went up by £3 when I input AIH! Bizarre! Anyone got any other suggestions? X