What does anyone know about AutoImmume Hepatitis???

Quite concerned and worried. Quite.

Both my daughter and I had our appointment with the Rheumy.

Ack! Was I nervous yet so excited.

Me?, SALE is ruled out (one doc says no, one says, one says no, one say...lol). Yes I have Discoid (which I definitely know!!!). But he ruled out SLE and diagnosed me with Fibromyalgia (something I already knew just by listening to my body, my mom has it, so I know what she went through).

Yee haw!

My daughter....not so out of the woods.

Autoimmune Hepatitis! What the heck is that????

Does anyone have any experience or knowledge about this?

My grandpa passed from liver failure (my mom's dad). My mothers half sisters daughter passed from lupus and my mom had SLE.

I am too scared to research this auto hep.

Can someone explain what they know or have experience with this please???

Thank you

5 Replies

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  • Hi Lara

    I was diagnosed with autoimmune hepatitis about 2 years ago and then SLE last year. The AIH was confirmed after being told I had drug induced hepatitis after a course of antibiotics resulted in hospitalisation due to jaundice. I went home after my liver results improved slightly then worsened dramatically over Christmas. I have been on Azathioprine ever since and actually have very few symptoms now. Unfortunately the late diagnosis resulted in fibrosis of the liver so as long as your daughter has been diagnosed and is receiving treatment, she should be saved from further liver damage, is my understanding.

    I do suffer from tiredness at times which is difficult to know whether due to the SLE or AIH or the Azathioprine. I was told at my last rheumatology appointment, last month, that the SLE is not showing up on my blood tests and by the gastroenterologist a couple of weeks ago, that the liver function tests are in the normal range. Of course, as with all autoimmune conditions, this is a lifetime diagnosis but can be well managed by immunosuppressants.

    The British Liver Trust website is a fantastic resource as well as here. Please try not to panic, it is manageable with medication and I would suggest you find out as much as you can and ask questions of the specialists you see. I get blood tests every month at the moment but the gastroenterologist has said this can go to 2-3 monthly now as my results are so stable.

    Good luck and I will be thinking of you both.

  • Erin,

    Thank you so very much for your reply. I am in panic mode like crazy, I cannot lie.

    She doesn't take care her health very seriously (at 19, who does right?) and now that I am 40 and I have seen all that my mom has been through, I have stressed immensely how important it is to be proactive about her health.

    We are in Canada. In a few days (once the initial omg factor wears off) I will read the site you suggested and what there is here as well.

    Just reading your reply has made me a bit more at ease. I am sure it has been found in good time; next step....wait for further specialist appt.

    *sigh*

    Thank you

  • So glad to have been of some help. I am in England so I don't know what your healthcare is like there but I know here I have had to chase for appointments or you can end up spending a lot of time worrying needlessly. I have also had to educate my GP as neither condition seems to be well known by them so I write down all my queries and concerns and work my way through them at each appointment. And, don't forget, there are new medical breakthroughs all the time so what affected your family previously could well be treatable now.

    Take care of yourselves and keep well.

  • Hi Lara4228,

    Hepatitis is the term used to describe inflammation of the liver; autoimmune hepatitis is a cause of long-term hepatitis in which the immune system affects the liver. The British Liver Trust’s website provides a detailed overview of autoimmune hepatitis which you can read here: britishlivertrust.org.uk/li...

    The British Liver Trust provides a free factsheet on autoimmune hepatitis which I hope will be of help to you: britishlivertrust.org.uk/wp...

    Having someone to speak to can help improve your overall wellbeing as well as help you cope with certain situations which can be tough. We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u...

    Wishing you and your daughter all the best, let us know how you get on.

  • Thank you for explaining this to me.

    It is appreciated and helpful!

    Lara

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