Autoimmune hepatitus

[African2Irish]

Hi allI have just discovered this forum.

I've been diagnosed with AIH and I'm currently on steroids to try and bring my deranged numbers down which is working. I started in 60mg and down to 40mg daily with no current talk of dexreasing. I'm also on prograf and this will be for life.

I've such bad insomnia and chronic fatigue. I take steroids stupidly early (between 4 and 6am) so it shouldn't affext my sleep. I'm lucky to get 3 hours a night... Any tips on how to combat these?

I've also noticed the dreaded puffiness in the face etc

[Aztec632]

There is a brilliant online community for AIH on Facebook. I have been a member since 2021. You will get lots of support from members who share their experiences and concerns and you wont feel so alone.

[Aztec632 in reply to Aztec632]

I would just like to add that the British Liver Trust is equally a brilliant community to be a part of with lots of lovely members!

[Ambrosian in reply to Aztec632]

That Facebook group has twice refused to let me join. No idea why.

[Aztec632 in reply to Ambrosian]

That's very strange!

[AyrshireK in reply to Ambrosian]

Is it this group you've tried to join - facebook.com/groups/AIHorgUK

I know there are questions you need to answer to prevent spammers from joining - you shouldn't have difficulty joining and I can echo the sentiment of others that it's a super supportive group to be a part of.

Katie

[Aztec632]

The chronic fatigue and insomnia is very common with the condition unfortunately and steroids play a big part in the weight gain but you need them right now to get the inflammation under control. It will get easier in time. You need a lot of patience.

[Readlots]

Hi, sometimes you can reduce and /or come off the steroids if you get the inflammation under control. I’m just on Azathioprine atm with occasional spells of steroids if I get a flare up. Doesn’t help the fatigue and I’ve been waking around 4.30 am for years but put it down to the menopause. So many things that can contribute… Keep taking the meds, having the blood tests and discuss how you’re feeling with your liver consultant. You’ll get there

[bleeny]

I was able to come off steroids after 6 months and just remain on Azathioprine. I get very tired but otherwise don't often think much about the AIH and the treatment is working well. I hope you will soon be the same.

[Running44]

hi there, I’ve also got AIH - 18 months in. I’m really sorry you’re struggling with these symptoms, so frustrating. I have the fatigue and it isn’t horrendously impacting but I can see a difference in the amount of energy I have in my tank.

It may just take a bit more time for the medics to decide to reduce the steroid but over time, they really don’t want you to be on high dose for too long. Even though you’re really tired, try and keep doing gentle exercise outdoors regularly as it will help you with your recovery and can help you sleep better.