Auto immune hepatitis (AIH) and decomp... - British Liver Trust

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Auto immune hepatitis (AIH) and decompensated cirrhosis

CastorOyl profile image
4 Replies

Hi. Was recently diagnosed with the above. Consultant had taken me off AIH meds Nov 2019 when bloods were normal. A year later I have the above diagnosis. Now they say they will not put me back on AIH meds, it’s not the policy. Am I just being left to die or are others with this well without meds?

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CastorOyl
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4 Replies

Hi CastorOyl

Are you blood levels all normal ?

CastorOyl profile image
CastorOyl in reply to

Not at the moment, they are high and all over the place

in reply to CastorOyl

Surprised that they don’t want you on meds if high, I would question it. Although it depends on how high , I know they have said that good lft result for me are higher than good results for someone who does not have pbc/aih . What were your last numbers ? I take it they are checking them frequently?

Hello,

May I suggest you clarify this with your liver specialist doctor/team. It is difficult for any of us to suggest whehter or not you should be on medication- but the doctors have a duty of care to explain the reasons behind their decisions.

I do have ongoing assessment and monitoring of your conditions ?

I have included links to information from our website regarding AutoImmune Hepatitis (AIH) and also cirrhosis

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

I have also included a link to our patient charter- which has information about what you should expect from your care.

britishlivertrust.org.uk/li...

Trust9

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