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

[Readlots in reply to AyrshireK]

Thanks Katie, I’ve resisted for about a year because I flared last time I agreed to try coming off them and needed Budesonide for a couple of months. On top of the Aza. I hate being on Steroids because of the side effects. My consultants like a dog with a bone though. I’ve agreed to half dose for 3 months with monthly blood tests. Maybe I need to ask for a second opinion. He often checks things out with the team at Addenbrookes.

[Readlots in reply to AyrshireK]

Sorry, typing too fast without my glasses on 😂 I’m not on Facebook but I might have to join. There is more and more information on. It that I want to access.

[exy21]

Hi, I tried to come off azathioprine without any help but had a huge flare, and it took months to get under control. Had to take steriods as well. My consultant was so unhappy and said well that proves you can't ever come off them. If your consultant is considering it, they must think your body can handle it.

I also take benzofibrate for the pbc as can't tolerate urso.

[Readlots in reply to exy21]

Interesting, thank you. I think he’s trying to balance the risks because I’ve had a couple of bowel polyps removed this year and my AFP was very slightly raised for 6 months 6.5 - 6.7. He’s keeping an eye on me though and my liver nurses are lovely.

[exy21 in reply to Readlots]

Good they're keeping an eye on you. I've had polyps removed too 🙈