Hi! I decided to join this community to seek out help. I was diagnosed with AIH in 2014 through a long process of feeling ill and not having a diagnosis. I take 50 mg azathioprine and 600 mg acid ursodeoxycholic daily. I have experienced throughout the years good and bad cycles. What I call a bad cycle is a bad gastritis, irritable bowel syndrome, constant nausea, extreme fatigue, sometimes bad headaches, muscles pain. I lose a lot of hair and even though I am careful with my diet, the smallest "naughty" thing like a pudding, causes me at least three days of sickness.
I have decided to live a normal life, I am still young and don't want to live talking about "my condition". That is why I am usually positive, try to minimise the symptoms, keep working and doing my life normally. However, I am tired, and sometimes I feel like an impostor. I usually avoid telling my family that I feel bad because I don't want to be "that person" who is always ill.
Does my description resonate with someone that also has AIH? Can anyone give me a piece of advice on how to manage what I'm going through?
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KikiMilena
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Hi there Kiki, my hubby has cirrhosis due to AIH so I spend a lot of time on the Auto Immune Hepatitis support group on Facebook. I am not sure your symptoms (bad gastritis, irritable bowel syndrome, constant nausea) would necessarily be typical of AIH but fatigue and joint/muscle pains are. Have you been receiving regular monitoring and blood tests? AIH can flare and it would be normal at that point for your liver inflammation markers to be way off and you'd perhaps need steroids to help bring it back under control.
How did they arrive at your AIH diagnosis back in 2014? Did you have a liver biopsy for example? I note you are on Urso too which is usually treatment for Primary Biliary Cholangitis rather than AIH. Has PBC/AIH overlap syndrome been mentioned at any point?
If you want to share experiences & compare notes with fellow AIH patients the Facebook group is excellent. About 3000 members world wide who are all AIH patients or carers of loved ones with the condition. It's a private group so no one else on your friends list sees what you post there. Admin are all fellow patients and group is supported by some of the top boffins in the UK who are working in the field of AIH treatment and research.
Hi Ayrshire. Thanks a lot for taking the time to reply to my message. I have changed countries over the past years, which has made it harder to follow up on the AIH. I was first diagnosed after having the liver inflammation markers high, the antinuclear antibodies,smooth muscle antibodies, and mitochondrial antibodies positive. A hepatologist suggested a diagnosis of PBC as well, but I finally kept the treatment for AIH. I took prednisolone for about six months, jointly with azathioprine and urso. I have not had a biopsy yet, since the treatment was working and keeping my inflammation markers under control. The doctor then said that the biopsy was not needed.
If I stop taking the urso (sometimes I have run out of it and have stopped it for about 5 days) I get very bad gastritis. If I don't take my medicine, I get really sick...
I don't use Facebook, but perhaps can ask my wife to join the group for me. Thanks again!
Hi Kikimilena,
I take both the medications you mentioned 100mg azathioprine and 1000mg Urso as well as other medication. I have PBC/AIH overlap . I lost a lot of hair before and then it calmed down. I can relate to a lot of your day to day symptoms and struggles . It’s hard and it is very hard to try and stay positive. I find I get fed up hearing myself say “I feel sick” but then I have to remind myself that it’s okay . Right now I am trying to adapt my life to suit my ailment’s. I work 12 hours a week , so that I still feel like I’m contributing, I bulk cook when I’m good and freeze portions, I recently bought an electric bike because I gave up cycling couple years ago do it being too hard on me. It’s a new normal for me and my family but it’sa better life than some .
Hi Angel,Thanks for replying to my message. Can I ask you how were you diagnosed with PBC/AIH overlap? What diet recommendations do you follow? Is the tiredness too bad? I am 38 years old, I try to keep myself very active, I work a lot, but in my bad cycles (I am undergoing one of those right now) I feel extremely tired. Is there any tip for this you could share?
I was diagnosed with pbc first , through bloods and then biopsy, aih was added couple years later . Consultant had thought originally I had both . Yes , the fatigue is horrendous as well as the constant nausea, muscle ache, joint ache , the list can go on and on .
I am 47 so a bit older than you , was diagnosed at 39. There is no set plan with how to cope day to day, I enjoy my good days and cope with my bad days . Being kind to yourself. Xx
Hi Kiki, Like Angel, I’m a bit older than you but I can totally relate to what you’re saying. The fatigue is a *****. Like you, I work full time and don’t want to let this disease stop me living a normal life. My way of coping is to pace myself. If I’ve got a big day coming up e.g. my daughters graduation, I’ll book 2 days off afterwards because I know it will wipe me out. I’ve also explained to my boss how AIH/PBC affects me and have agreed a lot of flexibility so that I can work when I have energy and finish early when I haven’t. I still do full time hours over all. But I know I’m lucky and not everyone has an understanding employer. Socialising can be hard because I’m ready for bed by 9pm but my friends (pre Covid) would book an early table or we’d meet at weekends during the day. I think the imposter thing is related to it being an invisible condition. Because you cope so well, people don’t understand what you’re coping with. I think long Covid will result in a greater understanding of fatigue. Have you heard of spoons theory?
Hi Readlots,Thanks for sharing. I am finally feeling supported. Only the people closest to me know about the AIH and not in-depth because I don't talk much about it. I just realised that my coping mechanism has been to deny I have it. I have been thinking that I take my medicine and that's it sorted. I have even pushed myself harder to work more and more, but then when I have bad cycles, it is frustrating because I extenuate myself, but I'm not as productive as I usually am. I sympathise with you, by 9 pm I'm tired and want to go to bed. I wake up very early; that works better for me. I don't cope well with late social parties (pre-covid anyway). I'm the one who is leaving early. I just feel like perhaps it is now too late to tell my colleagues about it. I haven't said anything, and for some reason, I feel ashamed, perhaps to say that there is something wrong with me...I'll go to see my doctor (a new one) and explain my process. I think that my medication needs to be adjusted. These last three months have been more bad than good. That is not a good sign...Thanks again for "listening" and replying.
You’re very welcome. I’m also an early riser, so that’s when I start work and when my brain turns to mush I stop. I think the shame is part of coming to terms with it, and not telling people means they can’t think less of you. You’re probably a conscientious high achiever and they would be impressed by how well you manage your illness and your work..It’s never too late to tell your colleagues, but only if you want to, and pick one you trust to support you. I’m 52 and It’s taken That long to make me realise that I’m the one with the expectations, that sometimes less is more, and that sometimes good enough is exactly that. We only let ourselves down when we push ourselves too far and fall over. Having said that, don’t let go of your ambitions. This illness doesn’t have to stop you, you might just have prioritise and focus your energy a bit more than others.
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