Hello I was recently diagnosed with aih. Still on prednisolone reducing dose and now taking azathyaprin. I am so very tired abs now have the classic moon face due to the steroids. I am worried about returning to work (I am a nurse educator) I have already been off since the end of December .
1.Can I ask when first diagnosed how long before people have returned to work?
2. When will the “moon face” go ?
3. I am really struggling with my mental health due to diagnosis any advice ?
Thank you
Hi Pbe and welcome 
We have several members with AIH I would think Katie will be along to share some good advice soon.
Unfortunately depression is often a side effect of liver disease. Some cope very well while others suffer quite badly, the anxiety and stress of being diagnosed is always a shock. I'm not sure that a work environment would be the best place while you work to recover your mental wellbeing. My depression only spiralled downwards at work, I put on a happy face and tried positive thoughts but even the slightest negative remark, regardless of how unimportant, would plummet me down.
In your role, you need to be focused, clear headed and resolute (because some days you will be tired). I don't think you will be able to do that all the time you are fighting any of these problems. My Occy health nurse signed me off for 2 months in order to help me get a handle on my problems... if I needed more it was available, I had a counsellor help me for 3 months but the first 2 months is where the progress really took place. If I had been at work I think it would have taken much longer.
Stay positive
Dave
Good morning,
I am sure our forum members will be along to offer support .
You may find it useful to contact AIH support . They are a charity offering peer support , which can be particularly helpful when newly diagnosed .
You can also call our nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm.
Trust9
Further to what the Trust admin have mentioned re. AIH support - they have a wonderful Facebook page with over 3000 members. All admin are fellow AIH patients and members are all living with AIH themselves or supporting loved ones with the condition (as is my situation). AIH support is linked with a great many of the top doctors in the UK working in AIH research and treatment and there are members at all stages of diagnosis so you will most definitely link up with people who can offer guidance on your various queries.
(Group is a closed one so no one else on your Facebook feed will see anything you discuss there).
Katie
Hi,I have had AIH for 1 year now.I started Prednisolone last March.I started Azathioprine in June.I am tired all the time too and also had the moon face.Since I have got down to 1 steriod and the Azathioprine 75mg I have lost most of the moonface and 7lbs in weight.I was brought down on the steriods every fortnight instead of once a month at the start as my Alt levels dropped dramatically as soon as I started the tablets. I started with an Alt level of 750 and within 11 months my levels are down to 18.My liver is only slightly scarred so hopefully they have caught me in time.I have been told that probably the reason I have taken this illness is because 13 years ago my bowel perforated without any symptoms and that is an inflammatory illness as well.I had Ulcerative Colitis and never knew it .My body doesn't work like other people's so maybe I'm not the best person to answer.I haven't went back to work since being diagnosed but I am 65 and retire in July anyway.I also care for my husband,that is the main reason I stopped working. I actually don't know if my tiredness is my AIH or my other problems that I have with my health. I try my best to be positive every day and am just thankful that I am still alive after nearly dying 13 years ago.I try to be young at heart but realise everything isn't always rosie.My moonface actually affected me more than anything but thankfully has went down 95%. I actually went to the doctors with bad indigestion and the Dr took bloods due to my past history .I could have been living with this autoimmune for years for all I know. I have never been a drinker so thankfully my liver is only slightly scarred as of now.Everybody is different. I hope sharing my experience will maybe help you a wee bit.xx
Hi Pbe, I was diagnosed 10 years ago in my 40s. I only had a couple of weeks off work to recover from the liver biopsy. I worked full time in a role that involved training for Acas so I can understand your anxiety when you’re in front of people you need to feel on top of your game. I haven’t been on steroids just Azathioprine so no moonface but definitely the fatigue, and I think that plus the menopause is what gets me down sometimes.
I’d say try and get back to work if you love your job, take your time if you don’t. Work should be keeping in touch with you to offer support. They may have an employee support offer that you can access to get some counselling to help you come to terms with your diagnosis. When you’re ready to go back ask for a phased return and build up slowly. You could maybe ask to go and observe a fellow trainer toget you back in the training room and build back your confidence. It’s a tricky balance because the longer you are off the harder it can be to go back, but you do need time to get over the diagnosis.
When you go back to work you’ll need to find a rhythm that works for you. I do important things in the morning and easier things in the afternoons when I flag. I never send emails after 3pm because I know there will be mistakes. I save them in draft and send the next morning. I avoid important meetings late afternoon. My colleagues and manager are very supportive. I’m now reducing my hours because I feel I want/ need to but AIH doesn’t mean you can’t do whatever you want to do, you just have to pace yourself. When you’re ready you’ll know. Be kind to yourself you won’t feel like this forever.
Thank you so much that is really helpful advice . I have just emailed my manager I know I will be off for a couple more weeks but asked for phased return. Great advice regarding emails as i now realise before diagnosis the afternoons were really difficult at work .
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