Auto-immune Hepatitis and Mercaptopurine

[KerryA]

Hi

I was diagnosed with SLE and APS about 25 years ago. Last year I was also diagnosed with Auto-immune Hepatitis. I was told this is very rare in people with Lupus. Does anyone else have it too?

Initially I was treated with high dose steroids. This improved the liver function tests a bit but to reduce them further and so reduce the steroids too, the Dr wanted me to take Azathioprine but it made me really sick. So he wants me to try Mercaptopurine. It's normally used for people with leukaemia and looks quite toxic with several potential side-effects. I'm not too keen to try it but will discuss it with him if I can get to my appointment (through the snow) on Monday.

Has anyone else got Auto-immune Hepatitis and/or is anyone else taking Mercaptopurine? or are you benefiting from any other treatment for AIH?

[InSpain]

Hi Kerry.

Yes, I have SLE, APS and AIH too, plus a whole host of other autoimmune conditions. I take Aza. It made me really sick at the beginning too. My body seems to have calmed down and I don't have any problems now.

There is a really good site on Facebook that I'm a member of. It might be worth joining as there will be many people who could help you with your question re Mercaptopurine.

The following link will take you to their site:

facebook.com/groups/AIHorgUK/

Best wishes from here InSpain.

[KerryA in reply to InSpain]

Many thanks for your quick reply and suggestion. I've just requested to join the Facebook site.

[Loura]

Good morning Kerry's.

Sorry for the delay in my response. I'm on the RA forum normally.

I was diagnosed with AIH over 7 years ago now. Took months of tests and several misdiagnoses before the Hepatologists finally agreed. Anyway been on mercaptopurine for nearly as long. Like yourself aziothiprine made me I'll. However mercaptopurine comes from the azio family. O have been fine on it. Bloods are monitored regularly to make sure white cell count doesn't drop too low. I also have rheumatoid arthritis, fibromyalgia, osteoporosis and lymphatic colitis. So the idea is to treat my conditions holistically. Throughout my journey all I can say is mercaptopurine has succeeded in managing my AIH. Hope you find the same.

Have a good day.