AIH-coming off Azathioprine

[Readlots]

I was diagnosed with AIH in 2012 and a few years later crossover with PBC was confirmed. I also have alpha 1 antitrypsin deficiency. Triple whammy!

I’ve been on Azathioprine and Urso for many years as I was diagnosed early. I’m fortunate that my liver results are within the normal range and I have minimal fibrosis. I know how lucky I am because I nursed my Mum through her final weeks of PBC. I’ve seen end stage liver disease and to quote my Mum “it’s awful”. My liver consultant has persuaded me to try coming off Azathioprine. Last time, about 5 years ago I came off it and it resulted in a flare up, so I’ve been reluctant to try again. Has anyone successfully come off Azathioprine? I know it’s only a low percentage of people who are able to without disease returning. It would be good to hear from someone who’s done it to know I’m not wasting my time and risking a glare up again.

[AyrshireK]

Are you on the AIH UK Facebook page ? There are folks on there who have come off meds but it sounds a bit dodgy if you flared the last time you tried. Flaring normally means getting hit with the high dose steroids again and repeating the whole treatment protocol all over again.

Katie