I have recently been diagnosed with Au... - British Liver Trust

British Liver Trust

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I have recently been diagnosed with Autoimmune Hepatitis and need some help and advice.

SLP23 profile image
6 Replies

I am currently taking Prednisoline and Azathioprine, my biospy showed inflammation, some scarring and fat in the liver. my ALP at its highest was 2807 but this has reduced significantly after starting the steroids. I am so tired and have constant liver pain. Any tips on what I can do to help myself get better, are there any food supplements or vitamins that would help?

(Thank you British Liver Trust for the information leaflets).

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SLP23 profile image
SLP23
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6 Replies
Maximillian profile image
Maximillian

Hi I have the same disease as you. Have just started the same medication. I do not have any pain but occasional discomfort. I do feel tired all the time but so far have carried on fairly normally working full time etc. just not active as much. I have been prescribed calcichew D3 tablets which are a calcium supplement to counteract possible side effects of medicines. Other than that I was advised to not drink other than special occasions and no more than the RDA. As far as food goes I was just told to eat a balanced diet. I hope this might help a bit. As I have just been diagnosed I do not have any long term experience to pass on. Good luck.

SLP23 profile image
SLP23 in reply to Maximillian

Thanks for your reply. I will ask my Doctor about the supplements. I hope all goes well for you.

Bolly profile image
Bolly

Hi SLP. I too have been recently diagnosed and am on the same meds.

Fatigue is par for the course with AIH. Also your body will take a while to get used to the meds. I found the prednisolone made me feel like cr**. What dose are you on at the moment? Hopefully you will feel better as your medics reduce the pred, which they should as your ALT comes down and the Aza gets to work. Now that I am pretty much just on Aza (5mg pred only) I feel much better, but still very tired.

For the fatigue, learn to pace yourself and don't push yourself too much. Rest when you can, listen to your body. If you work, have a word with your employer to see if hours can be adjusted for a while ,until your liver settles down again.

Max is right about the calcium and Vit D3. D3 helps with aches and pains. Personally I take more than the 400iu from the tablets, I take 1,500iu per day from a product I buy from health food shop.

Also a multivitamin isn't a bad idea.

Try and cut down on sugar in your diet, and don't drink alcohol. If anything like fatty food makes you feel queasy, then cut that out too. Fresh food not convenience if possible.

There is a good specialist AIH forum at autoimmunehepatitis.co.uk . I advise joining that, the people there are really knowledgeable and supportive.

jenniwren profile image
jenniwren

Hi SLP,

I have had AIH for over 13 years now. Fatigue is something you will learn to live with. I work full time and take part in a few projects outside of work but know when I need to stop and take things easy for a while.

Keeping to a relatively low sugar diet is, as I have recently discovered, a very good idea. Having been on prednisolone for so many years, I am now running quite high blood sugar levels and have been advised to stick to a diabetic diet to slow the onset of diabetes. I also don't drink as I have developed cirrhosis over the years.

In terms of medications to counteract the steroids, I take alpha-calcidol and risedronate for calcium, Vitamin K for clotting and carvedilol for varices.

Be careful of scaremongering stories on some forums- take things with a pinch of salt!

All the best

Jen

Bolly profile image
Bolly

"Be careful of scaremongering stories on some forums- take things with a pinch of salt!".

Autoimmunehepatitis.co.uk seems well moderated to me! No scare stories there. There was a jenniwren who posted there til 2011, was that you?

SemiCaretaker profile image
SemiCaretaker

Both Co-Enzyme Q10 and Ubiquinol have made a significant difference. They fire up your ATP. The fatigue will vanish. The energy will flow!

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