autoimmune hepatitis, autoimmune pulmonary capilaritis, autoimmune hemotology

[sickteen]

Teen daughter has autoimmune hepatitis, autoimmune pulmonary capilaritis, and autoimmune hemotogy problems.   Diagnosed four years ago.  Treatment included Prednisone and Imuran in very high doses (200mg. daily).  Blood results dropped to WBC 3.0, Platlets 90 and meds stopped. Liver improved and only on maintence does of Prednisone for one year.  Now liver tests are showing rising counts and another liver biopsy has been done.   Dr. is recommending 1 g. Cellcept but we are balking at this treatment because her blood counts are so low.  Hemotologist is concerned that she will go into bone marrow rejection.  She has had 3 bone marrow aspirations that show no known disorder, also evaluated by a rheumotologist with no know condition. Lungs are in good shape now with no hemmorage since the initial diagnosis four years ago.    Does anyone have any idea what the heck is going on and are there any open studies that might benefit this teen?  We are getting a second opinion on the liver meds but still have great faith in her original doctor.    

[Maari]

Hi  Sorry to hear about your childs problems.  I have AIH was dx in 2004.  There is a very good all AIH site   autoimmunehepatits.co.uk    Please check it out.  Ask your questions there.  They have folks who have lived with AIH for 25+ years.  I have gotten answers to all my questions.  It is good to know that you are not alone.
Maari