Autoimmune hepatitis treatment

[Cfmwatson]

i was diagnosed ith AIH around 2 years ago, but they are still struggling to get my levels under control, i have been taking azathioprine and prednisolone, but recently swapped to Budesonide. has anyone else had difficulty getting their levels under control?

[Auds5]

Hi Cfmwatson. Welcome to the forum 🙂.

Reading your post reminds me a bit of my AIH journey so I thought I'd share my experience so far and encourage you.

I was admitted to hospital this very day (27th) in 2017 and was diagnosed with AIH. They started me on steroids and still remain on them today, although at a much lower dose. I also started Azathioprine then but couldn't tolerate it for long so then started on Mercaptopurine. I stayed on Mercaptopurine for nearly 2yrs before taking another flare up so they moved me onto Mycophenolate, which I'm still taking.

My LFT's have only started to level out in the last 2 months. So I asked my Consultant why it has taken so long to get these flare up under control as my concerns were 1. to get of the steroids as quickly as possible and 2. how many more immune suppressants will be available to try to keep the flare ups at bay. His answer to me was that I have a very active and strong immune system and everybody's own body reacts differently. And sometimes there is not an obvious trigger for the flare ups and quite possibly my LFT's may never be in the "normal" range but just slightly above.

These last couple of months my bloods thankfully are now all within the normal range and hopefully will continue that way but I understand how frustrating it is when they are not "normal".

Try to hang on in there and hopefully the Budesonide and Azathioprine brings your levels down. Maybe if your Consultant is approachable, you could tell them your concerns and get them to explain their chosen course of treatment. For me they had to keep adjusting the dosage of both steroids and immune suppressant to get the required results.

Take care and hope this helps.

Auds5

[Hidden]

Good morning Cfmwatson,

Sorry to hear you are struggling to get your Auto Immune Hepatitis (AIH) under control.

I can see Auds5 has shared her story for support and I am sure others will too .

In case you are not aware there is also an AIH support network which may also be useful.

britishlivertrust.org.uk/in...

Just click on the AIH section and it will lead you to relevant information.

I hope this helps ,

Best Wishes,

Trust9