No Meds AIH

[W_larks]

hello, I was dx pbc in 2016. Dx AIH 2019. Been on Aza and pred for last 3years.75 mg aza and down to 5mg pred last 2 years.in March I had an infection and was told to come off aza until I felt better. 2 weeks later I restarted aza and at 100mg because I was supposed to be coming off pred in the next few months. When I restarted the aza I felt really nauseous and had tummy pain . GI told me to stop aza until hep could call me. In June he called and told me to reduce pred at to 2.5mg .and that was it ! GI thought he would try another immniosuppresant but he didn't. So I am now on 2.5mg of pred for next 6 months then im to stop completely. I am really scared ...

[Limalama]

Hi W! Have you been having regular blood tests, and are your numbers good without the aza? Some GI/heps seem to like to try and wean people off the meds if they're stable. It may be worth a try. (I'm AIH/PBC overlap, 100mg aza, 4mg pred, 1000mg Urso - you don't mention Urso, are you on that for your PBC?)

If you're on Facebook, I'd strongly recommend asking this question on the AIH Support UK & Ireland group (you don't have to be in the UK to join). It's a regular topic and you'll get some helpful suggestions on what questions to ask. There's also an AIH/PBC group which is not as active and is mainly US focused. Hope this is of some help.

[Readlots]

Hi, I’m also PBC/AIH overlap. Been on aza and Urso for years. Liver function was good so Hepatologist tried reducing Aza and coming off it 2 years ago but then I had a flare up. Needed a short course of pred but then back to just aza and urso. At my last clinic appointment he said that as my levels have been good again for a while we’d try coming off aza again next year. So you can be fine without medication, they’ll keep an eye on you and put you back on it if you need it. It does feel like taking the stabilisers off your bike! But if you can do without that’s a good thing 😀