AutoImmune Hepatitis

[BettyBoman]

My daughter has been diagnosed with auto-immune hepatitis.  Please note this is not hepatitis A, B, C, D or E -- this is a disease that originates from an auto-immune disorder.  We are looking for specialists who are knowledgeable concerning all possible medications to treat this disorder.  Whatever information and/or advice you have will be appreciated.  She is taking 23 different medicines daily, an ever-increasing amount of pharmaceuticals, since prednisone (high dosages for over a year) did not help her at all, other than to push her into Cushing's.  She is 48 and has suffered with this since early 2004.

[Maari]

Hi Betty
I am sorry to hear that your daughter is having so many difficulities with AIH.  There are no Doctors on this site, it is a patient to patient forum.  I have autoimmunehepatitis, was diagnoised in June 04. I was started on predn and then Imuran, and now take imuran only.

There are a number of good doctors around the country.  I see a liver specialist at the University of Chicago. There is a very good all AIH site, it has lots of information about drugs, treatment, etc.  www.autoimmunehepatitis.co.uk
You can browse their information and or join and chat, ask questions.  The motto is You are not alone.

Take care
Maari

[Joanie68]

Hi There -

You can pay $16 on this site and pose a question to the doctor and he will offer counsel.  There are lots of books on this topic.

[CJAZ]

I hope you don't mind my posting this question but we are desparate to find information on autoimmune hepatitis symptoms caused by delayed minocycline use.  Our 18 year old daughter has been diagnosed and our liver specialist has ver little information on it soI have been spending hours on the computer and your forum seems to have the most helpful members. Does anyone out there have any experience with this or know of a good doctor who has?

Thank you so much for any help you can give.

[ConcernedMom1987]

My 18 year old daughter was diagnosed with minocycline induced autoimmune hepatitis in Oct, 2007 also.  I sent an email to your inbox in regard to this.