Autoimmune hepatitis

[Millytam]

Hi, have just joined the group after being diagnosed with Autoimmune Hepatitis. Has come as a blow and feeling quite anxious/scared, currently taking 20mg Prednisolone daily, any advice/words of comfort would be greatly appreciated.

[AyrshireK]

Hi Milly, whilst you'll get some good support on here. If you do Facebook at all there is an excellent purely AIH support group on Facebook at:- facebook.com/groups/AIHorgUK/ It's a closed group so none of your other friends see what you are posting. There are over 2500 members from all around the world and group is supported by some of the top professionals in the UK who are working in AIH treatment and research and they also have regular conference style get togethers.

You'll get excellent support there.

British Liver Trust has a page all about Autoimmune Hepatitis at:- britishlivertrust.org.uk/in...

My hubby has cirrhosis due to AIH and there are loads of other members on here with the condition.

Katie

[Millytam in reply to AyrshireK]

Thankyou so much. I have just joined the FB group so look forward to getting some information from there.

[gertrudestein]

Hi Milly and welcome. I have had AIH for 18 months now and I agree with what Katie says (she is extraordinarily knowledgeable and helpful on this forum). The weirdest thing is that everyone with AIH seems to have different reactions, symptoms, progression through the disease etc. but if you follow your medical team's advice, eat healthily, keep reading this and the FB forums, you will soon get used to it. There is no need to be scared - it's more of an inconvenience than an illness I would say. But as I said, each patient is different. Are you still working? I am retired so the occasional tiredness, joint pains etc. are no more than I would expect for an old lady of 72!

[Millytam in reply to gertrudestein]

Hi there, I do feel more calmer now, it just came as a bit of a blow really, but am slowly coming to terms with it! I am a Reablement Worker in the community, but went sick due to anxiety, and now been diagnosed with this. Not sure if I will be able to return to work or not, have only got a year and a half until I retire, so not sure what to do. Thank you for reassuring me x

[Hidden]

Hi Milly and welcome,

I see you have already been given our publication info on AIH.

I hope you find the forum a supportive place to visit

Trust1

[CarpeDiem11]

Whether you go back to work or not will depend on a lot of factors that are not all illness related. However, I have had AIH over 10 years and it is generally a disease that is managed with meds. There is no cure. When I was diagnosed, I went back to work very quickly, on the advice of my Consultant but I'm not sure such a quick return to work is for everyone and really it was too soon for me.

You will initially go on steroids and as your body responds to steroids, these will be reduced and an immune suppressing drug will be added. How well you respond at this stage, will probably help you decide when you return to work.

Listen to your body, rest when you need it, but try to exercise when you are feeling better, as it will help all round. It takes about 12 months to get used to what you can and can't do. The Facebook group is really useful and I would advise reading the files there when you feel like you want to know more.

Try to be patient about what you can do now. Most people have a normal life, despite various different reactions to the meds. Get a good relationship with your GP and you should be alright. Best of luck🙂

Hope things go well for you🙂

[Millytam in reply to CarpeDiem11]

Thankyou so much for the advice, I feel absolutely fine at present, am on 20mg of Prednisolone, and just waiting to get some bloods done. Iv joined the fb group, which is great, lots of advice/info on there. Once again, thank you.

Keep well and stay safe x

[CarpeDiem11 in reply to Millytam]

Glad you're doing well. Glad the fb page has been helpful too. The admin are great and of course all questions just relate to AIH, rather than general liver problems.

All the best to you and yours

[Millytam]

🤗🤗🤗