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Hello my daughter was diagnosed a year ago at the age of 20. After multiple test and results that didn't definitely say it is autoimmune hepatitis. Even the liver biopsy showed slight signs so that is what the doctor said we were going with cause everything else was ruled out. She was initially placed on imuran after Prednisone for about 2 months. Unfortunately she is intolerant to imuran and can not take it. They switched her to cell cept but even after a year of being on it and then adding low dose Prednisone her liver test have never been normalized. We are frustrated and confused cause even asking questions to our gastro Dr., which we have only actually seen once and that was the day of the liver biopsy, we only ever see the nurse practitioner. I feel after a year we are not getting anywhere. Her liver test are low but not normal we have never hit that. My question to the three is has anyone else had this much trouble and should we be seeking another Dr at this point? Also does anyone know does increased stress cause symptoms to come back briefly until your stress has subsided? She is now a senior in college and the last quarter of her junior year during finals week she had all her symptoms again except the jaundice. Any help or suggestions would be greatly appreciated.
Replies to "Hello my daughter was diagnosed a year ago at the age of 20. After multiple test..."
@jtg8771, I want to welcome you to Connect.
I was once believed to have AIH. Since it was nearly 20 years ago, my memory of the details is sketchy. I also had multiple tests when my liver enzymes inducated that something was wrong with my liver. After different liver diseases were ruled out by lab tests, and since I have another autoimmune condition, it was a logical decision by my gastroenterologist to consider the possibility of an AIH diagnosis. I was prescribed prednisone, and then Imuran was added. But the Imuran caused my to bruise and bleed easily. I think my liver biopsy indicated that I did not have AIH, so he sent me to a Hepatologist (liver specialist) to get my diagnosis.
It is not unusual to have trouble determining the AIH.
I would like to share the information about Autoimmune Hepatitis from the Mayo Clinic Patient Care & Health Information>Diseases & Conditions. I like this site because it is easy to read and understand while being very complete and provides accurate information.
https://www.mayoclinic.org/diseases-conditions/autoimmune-hepatitis/symptoms-causes/syc-20352153
As for your daughter, How long ago was her biopsy, and has the doctor provided you with any information about the results? Your daughter should be being monitored with labs regularly. I think you have a right and a responsibility to request to see the doctor (GI) who has specialtu training to address your concerns and questions. Your questions are appropriate and if you are not getting satisfactory care, you ought to look for a different specialist (GI with experience/training in liver disease or a liver specialist.
What insights did you learn from the AIH information? What questions do you have? I look forward to hearing from you.
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@jtg8771 Hi, I’m so sorry that your daughter is having so much trouble. I strongly suggest another doctor. You really need to have faith in your doctor and feel that he/she is doing everything possible. When I was diagnosed with CLIPPERS disease, my husband wasn’t really comfortable with the neurologist, so he called the medical center at the university. We got a great doctor who directs my care and local doctors follow her directions. It has worked out well. University medical centers have the research and knowledge that’s needed! My sister also has an autoimmune disease and she receives care at University of Michigan. Please try it. Our lives are mostly back to normal, as long as we follow all the rules! Becky