Autoimmune hepatitis : Hi everyone I am... - British Liver Trust

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Autoimmune hepatitis

Bomb_mansi profile image
6 Replies

Hi everyone

I am 36 years old and a mother of two beautiful kids. I was diagnosed with autoimmune hepatitis before 2.6 years. Since then my OT, PT, GGTP AND ALKALINE are not coming within the limits. Rest all my reports are normal. I am really scared as to what will happen! How long i will be able to survive! I love my family and can't see them suffering. What all i can do to live longer.Expecting positive reply. Thanks

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Bomb_mansi
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AyrshireK profile image
AyrshireK

What treatment are you receiving Bomb_mansi? It would be usual to receive a high dose of steroids at first to bring down those numbers and get the current inflammation under control and once they start to stabilise a little introduce an immune suppressant to keep the immune system tamped down to prevent it attacking liver. In the UK doctors normally start on Prednisolone steroid and introduce azathioprine although if this combination doesn't work there are alternatives of both the steroid and the aza.

If they can get the condition under control there is no reason why you can't live a normal lifespan, however, it is necessary for them to get the immune system in check or long term you might see liver damage starting to occur.

I don't know whether you do Facebook or not but there is an amazing AIH support page on their with 1500+ members from around the globe. It is run by fellow AIH patients and supported by some of the very top doctors working in the field of AIH and Immune Suppression in the UK. You'll find the page and a warm welcome at:- facebook.com/groups/AIHorgUK/

My hubby has cirrhosis due to AIH, though he has an unusual presentation that his liver condition only came to light when the cirrhosis symptoms appeared, he had nothing before that and his AIH is deemed to be burned out.

Katie

Bomb_mansi profile image
Bomb_mansi in reply to AyrshireK

Thanks for sharing the link of FB. I hav send the request. Thanks for sharing ur views and for ur moral support.

clover90 profile image
clover90

I am sorry to hear you are unable to get your levels down. You really do need to speak to your consultant.

I have had AIH for 7 years at the end of March. I was on a large dose of steroids at the beginning and within the first month after my liver biopsy Inwent onto 115mg of AZA. I have been on 100mg for the last 2 years.

I still have a blood test every 3 months and see my consultant every 6 months.

I hope you join the Facebook page and also go to one of the seminars as this will give you another prospective from a different consultant.

Last but not least stay positive. I still work part time and this helps me.

Bomb_mansi profile image
Bomb_mansi in reply to clover90

Thanks so much for your kind words.

Bomb_mansi profile image
Bomb_mansi in reply to Bomb_mansi

Keep advising me.. Thanks

Hi,

Welcome to the forum.

You may find our updated publication on Autoimmune Hepatitis useful to read, here is the link;

britishlivertrust.org.uk/wp...

However, the information is for general purposes and all specific guidance and advice should come from your own doctors.

We hope you find the forum a supportive place to visit,

Best wishes,

BLT Admin

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