Newly diagnosed with AIH

Hi I am 31 and have just recently been diagnosed with AIH, I am just waiting for an appointment for a liver biopsy to determine the extent of the AIH. I'm still very overwhelmed by this diagnosis as I had never heard of this disease before. Can anyone shed a bit of light on the condition and is there anything that you could recommend to make symptoms improve or lifestyle changes I need to think about making. I have two young children and work full time, this is why I thought I was so tired and not that there was anything wrong medically.

Thank you in advance. Jo

11 Replies

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  • Hi, there is a good website called autoimmunehepatatis.co.uk and there is also a good support forum where a lot of your questions can be answered by those who have aih and are dealing with it and it's complications.

  • Dear jodenise80,

    I think that mumzymum has given you some good advice, and I would also like to suggest that you contact Matt and Ruth. They both have AIH and are more than happy to speak to other AIH patients.

    Matt Hastings

    0845 3700 997

    AIH@wowretail.co

    autoimmunehepatitis.co.uk

    Ruth Ford

    0131 467 1718

    ruth.ford@hotmail.com

    If you are given a definitive diagnosis of AIH, you will then be advised on treatment.

    You should be advised to have the seasonal flu vaccination and pneumoccal vaccination in the Winter months.

    It is important to look after yourself by way of a good varied and sensible diet and to keep as active and mobile as possible. With regard to diet, please click on the following link and turn to page 17 of the downloadable publication publication:

    britishlivertrust.org.uk/ho...

    Please feel free to give me a call on the Helpline number: 0800 652 7330

    Best wishes and kind regards,

    Sarah Tattersall

    Patient Enquiry Officer

    British Liver Trust

  • I have tried the website that you have given but I keep getting pop ups and a flash player update message. It doesnt look as though it is active as last entry is dated 2011. WHere am I going wrong? can you help?

  • go to the british liver trust website it has loads of info on it.

  • HI

    I have recently been diagnosed also and would suggest the sites mentioned here. I would say i have found it helpful to write any questions i have from the information i get and also ask my consultant/Dr/specialist nurse. I know that if i am in pain a warm bath helps me although thats just a personal experience and i dont know if its recommended but sometimes I'm sore enough i just want bit of relief.

    Best of luck to you.

    Ax

  • I was diagnosed with AIH/PBC overlap syndrome last year. I am on Ursodeoxycholic Acid for the PBC (only treatment available at the moment). As for the AIH, I was originally on Prednisolone (8wks) and weaned off as liver biopsy showed PBC and not AIH but my LFT's rocketed and I had to go back on steroids. This time was for 6 months of Budenofalk (also a steroid but less side effects - can only go on these if you have no cirrhosis of the liver-biopsy will confirm if any) and Azathioprine (autoimmune suppressant-basically stops the white blood celss from attacking the liver cells). I have just finished the Budenofalk and I am hoping to remain in remission (= normal LFT's (Liver Function Tests) indicating no inflammation). I am also SMA positive (indicitive of AIH).

    Hope your consultation goes well and you should definately write down questions you want to ask so that you don't forget. It can be really scary but once you get a treatment plan sorted out, you will feel a bit more in control. Everyone has different symptoms to a lesser or greater degree. Just try to listen to your body. When you are tired, rest when possible. You just have to find what works for you.

    I try and eat a healthy diet and have given up alcohol altogether now (even though they say that you can have the odd one, I don't want to put any toxins in my body which will make my already pressured liver have to work any harder - just my take on it).

    Take care. x

  • Hi we have a little group on facebook too AIH Friends UK.

    I think everybody's AIH differs in severity and symptoms. I was diagnosed at 34 (nearly 8 years ago) after I had a month of being poorly, ending with severe jaundice. I was put on prednisione for 6 months. The specialist wasn't convinced of the diagnosis as no biopsy was done. I was taken off the steroids and relapsed within 6 months. I lost some of my hair at this time too. I was put onto stronger steroids initially 50mg, gradually decreasing as azathioprine was introduced. Had a biopsy which showed the inflammation but only 3% liver damage.

    I have been in remission for nearly 4 years now taking only 100mg azathioprine. I have had another (and hopefully my final) biopsy which showed similar results to before..meaning that the condition is still active but responding to the immunosuppressant therapy.

    I live the same life as others apart from holding down a full time job with 2 children became too tiring - choosing to work part time now. I drink but am careful of sun exposure because of the medication.

    It was a shock when I was first diagnosed and it takes time to get your head around it but wait for your biopsy results as this condition can be mild - so don't be worrying needlessly.

  • Thank you for all your advice and support I had my biopsy last thursday so am now awaiting the results.

  • Hi Jo

    How did your biopsy go?

    I have recently been diagnosed with AIH following endless bloodtests (best get used to them I suppose!) and a biopsy. It all feels a little surreal at the moment, I have started on predisolone (40mg) and my joints are already feeling better but getting other less positive side effects.

    I have found the AIH support page great to read through and the various booklets on the liver trust site.

    I am now looking into ways I can help myself with better diet and lifestyle etc. I currently work 4 days a week and have a 2year old at home. Not looking to go back full time anytime soon now.

    Hope you are getting to grips with AIH and that you are getting lots of support

  • Check out this website:

    liverfoundation.org/chapter...

    It made a lost of AIH make sense to me. I'd be interested in your thoughts.

    :0)

  • Hi, Sorry to hear about your AIH. I have had it for about 5 yrs now. My best advice is make sure you take any medication you are told to take. I didn't tolerate meds very well and stopped taking them and my AIH has progressed badly. I have been told that I am a very unusual case (wish I wasn't) but it is very important to keep on top of it to make sure you don't damage your liver further.

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