- Auto immune hepatitis

[Guest guest]

Hi

Welcome to the group. I was diagnosed with auto immune hepatitis –

it's often abbreviated to AIH – in 2000, although I probably had it

before then; my rheumatologist noticed my liver function tests –

often abbreviated to lfts – were abnormal and referred me to a

hepatologist – a specialist in liver conditions. It's always

beneficial to see one of these specialists if at all possible, as

they see more cases and have the most experience at treating it. My

first comment is that many liver doctors say that not all AIH

patients develop cirrhosis, or need transplants, although some do.

The internet is a scary place for medical information sometimes, as I

found out. I can recommend two other yahoo support groups which have

many AIH patients on them.They are LiverSupport-L and AIHep. From

these groups I learned about a very helpful book by hepatologist Dr

Palmer called Dr Palmer's Guide to Hepatitis and

Liver Disease. Make sure it is the 2004 edition, which is an update

of the earlier one. There is a whole chapter on AIH, in which she

says " Studies have shown that people who are successfully treated

have a life expectancy similar to that of the general population,

even if cirrhosis was present at the time AIH was initially

diagnosed. " You can get this book via www.amazon.com , or via Dr

Palmer's website www.liverdisease.com which has a lot of information

on the liver, and liver disease, and advice about diet and what

tablets to avoid etc. I wish I had had this sooner, as I was in a bit

of a panic for a while! The usual drug treatment for AIH is a

steroid such as prednisone/ prednisolone, and azathioprine(Imuran)

which damps down the over active immune system which is the cause of

the hepatitis. Often the doctor will try to reduce or remove the

steroid, leaving the patient on azathioprine, if the liver responds

well to this treatment. This is what happened to me. For the first

two years I was on no medication as my liver tests were ok, then they

went haywire and I felt ill. I was put on the tablets I`ve mentioned,

and within a day my liver tests started to improve. Luckily I

tolerated both medications very well, and was able to stay stable on

azathioprine alone after three months. My liver function has stayed

normal since, although I shall always have to have the azathioprine,

and shall always have to have regular liver function tests to check

everything is ok. I'm always careful to avoid alcohol, and never take

any medication , from doctors, or over the counter ,or natural/herbal

etc without checking that it is ok for the liver, as so much isn't.

Again there is a lot about this in Dr Palmer's book. Remember I'm not

medically trained, but I think everything I have written is ok. My

advice, if I may give it, is to educate yourself about the liver and

your condition as much as possible, as knowledge is valuable to

helping yourself. You are your own best advocate. Also if your family

and friends can learn about it, and understand you may be fatigued

and unwell, this will help.

If you want to ask me anything else, please do. I hope this helps a

bit.

All the best

Pam Leeds, England