Auto immune hepatitis: Hi I’m new to... - British Liver Trust

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Auto immune hepatitis

Hefer profile image
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Hi I’m new to this but have recently been diagnosed with auto immune hepatitis. Does anyone know of any supplements that help the feeling of total exhaustion. I am on budenofalk 9mg and about to start other medication. Has any one else had the same experience

Thanks

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Hefer
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AyrshireK profile image
AyrshireK

Hello Hefer, sorry to hear of your diagnosis. My hubby has cirrhosis due to AIH (though he never knew he had the condition until it was too late in the day to treat). He can certainly sympathise with your exhaustion. In many cases this eases once the meds have kicked in and are more in control of your inflammation - whilst figures are high you are likely to feel very 'under the weather'.

There arn't any supplements that will really help at this time (and you should be careful of taking anything that isn't checked by your specialist first especially as you are newly diagnosed as some OTC or 'alternative' treatments can actually be bad for the liver). Sadly you need to listen to your body and when you need to rest then you do need to rest. I don't know whether you've ever heard of the spoon theory (Google it) but it helps explain the fatigue in auto-immune conditions.

If you do Facebook at all there is a fantastic online AIH community on there which is moderated by all AIH patients and is supported by some of the top boffins in the UK who are working in the field of AIH treatment and research and they even have bi-annual get togethers at which these top doctors speak. It's a closed group so you have to request to join and no one else on your Facebook feed gets to see what you post so it is really good for asking questions and even venting at times. Everyone on there has gone through the recent diagnosis stage and then all the coping mechanisms, treatment options etc. etc. There are over 1600 members now from all around the world and you are certain of a warm welcome.

You'll find the page at:- facebook.com/groups/AIHorgUK/

All the best,

Katie :)

Hefer profile image
Hefer in reply to AyrshireK

Hi thank you very much for your reply very helpful. I shall follow the link to the Facebook site. Also good luck to your husband. I appreciate you taking time out to respond regards

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