Diagnosed today with AIH

Evening everyone, I was diagnosed today with AIH (to add to my collection of autoimmune conditions 🙄) and although I was sort of expecting it, I still feel a bit cheesed off. Anyhoo, my consultants great and I couldn't ask for a better one, I've been under his care for about 8 years for coeliacs and other things but he hasn't told me anything what I should /shouldn't do. He did explain what is happening and how the medication works but I was wondering about is there anything I should/shouldn't do that will help myself? I hardly drink and I do go the gym regularly and have a good diet due to the coeliacs but is there anything else I need to consider ? Thanks for any help

7 Replies

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  • Just live your life as you have been, exercise is great for AIH as a common side effect is fatigue. Some people also experience aches in joints etc. Watch the booze as you now have a liver that is under attack and you don't want to 'add fuel to the fire'. Most people get told they can still have a drink even with AIH but you are giving a stressed liver something else to cope with.

    Most folks find they have issues with the medications - weight gain if its pred you are on as well as mood swings, sleep being affected etc. Also, you have to be aware (once you are on immuno suppressants) about exposure to other peoples germs, bugs and beasties and also taking good sun protection if you are put on AZA.

    There is an amazing Auto-Immune Hepatitis support group who have a closed page on Facebook. There are over a thousand members, most of whom are AIH patients with a few loved ones and carers flung in (like me). They have all been where you are now and can offer advice on all sorts of matters AIH related. Some members have regular social meet ups plus twice or so a year they organise a big gathering at either Birmingham or London where guest speakers attend and these are usually some of the top boffins on AIH in the UK, so the group is fantastically supported and supportive. Page is at:- facebook.com/groups/AIHorgU...

    All the best, Katie

  • Just wanted to say Suuzyb, that I have AIH and am a member of the Facebook group. I have found it most useful for the meetings that are held i London and Birmingham as AyreshireK has mentioned below. If you have any specific questions as they come to you later, you can always PM me or use the Facebook page. Good luck :)

  • Hi I have aih for the last ten years I'm on prednisolone 5 mg now was on much higher dose and I'm on imuran 75 mg daily while I have nausea side effects with these drugs I try to drink more water, have a substantial breakfast as I take both of these tabs in the morning, I try to just get on with my life and not really think too much about aih I do get tired though, but rest when I can, also having a good diet and no alcohol helps

  • Are you in uk suuzyb

  • Hi everyone thanks for your replies. It's nice to know there others who understand 🙂. I am currently on prednisilone , I started at 20mg and have tapered to 15 and will continue to taper every 2 weeks. I absolutely hate the medication and I am currently off work due to the side effects but the side effects have reduced a lot a few days after my first taper and Im starting back at work on Monday. I'm a bit nervous to go back, I'm not sure why but I know I'm not comfortable talking about it and I certainly won't use the word hepatitis. I've been prescribed azapriothine which I started today but I have found that a week after being on the steroids my achy legs and sore knees and tiredness have come back. Guess I will be like that until the azapriothine Kicks in? I'm in the UK in the North West area and will be resurrecting my Facebook account to join the group . Thanks for your replies 🙃

  • I'm in the North West too suuzyb and am a member of the Facebook Group katie linked to. Its very supportive and informative. We also created a 'sub' group last year to arrange socials in Manchester (or nearby) for those in the group who lived in and around the Greater Manchester area. (I think i have just joined you to the group!)

  • Hi Bolly, yeap I've just joined see you over there 🙃

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