AIH Flare up??

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New Member

Date Joined Nov 2007
Total Posts : 2
   Posted 12/4/2008 10:08 AM (GMT -7)   
blush   Hello. My name is Gwen. Its been sometime since I have been to these boards. I am 40 yrs old and in my early 30`s I found out I had elevated Liver Enzymes. Went through a whole host of docs before I was finally able to see Dr. Jeff Crippen at Barnes Hospital in St. Louis, Mo. In 2004 my LE were 6 times the norm and I was having the same symptoms that I am having now. He did a Liver Biopsy then. He stated that everything looked fairly normal then but he was almost certain I had Autoimmune Hepatitis but he was reluctant to begin treatment at that point because the drugs were so powerful. I have seen him once per year since then and he always tells me to report back if things get worse and in the mean time has my local doc to monitor my situation. Well, Ive done a lot of research since then. I believe I have been in remission. However, this past month my symptoms have started to flare up again, I am having pain in my knee joints, My stomach hurts up in the top just like it does before you get a bad round of the stomach flu. I have nauseau, occasional loose stools, mental confusion, headaches, fatigue like you would not believe...just all the other typical symptoms that I presented with in 2004. I have recently had my DNA tested for a Family Tree Project and have found out that I am of Northern Eurpoean Ancestry, in my AIH research, I noted that it tends to affect Young Women who are of Northern European Ancestry. I have several ppl in my family who have other Autoimmune Diseases as well. I have a sister and several cousins who are Insulin Dependent Diabetics. I have two cousins with MS and TN. I also have a diagnosis of Trigeminal Neuralgia (TN) Which is common with MS, I havent recieved a Dx of MS though. My mother had Pernicious Anemia, which is Autoimmune...I have a sister with Thyroid Disease as well. So there are a host of other Autoimmune Diseases within my family. I currently do not have any medical insurance. I am on Disability and had dropped my Insurance and I cant reapply until January, and coverage wont begin until June! I would like to speak to others here who have dealt with Autoimmune Hepatitis and just talk about the symptoms and how long it took to come to an accurate diagnoses...etc.

Regular Member

Date Joined Aug 2006
Total Posts : 469
   Posted 12/6/2008 5:18 AM (GMT -7)   
Hi Gwen and Welcome to the forum.

I was diagnosised with AIH nearly three years ago. It did take seveal years for me to be diagnosised as I did not have all the markers that are indicative of AIH. Reading posts from other AIH individuals on here I understand that there are others that are given a diagnosis much quicker, so it really depends on each individual. I am currently on seveal medications (prednisone, imuran, urso, liadia, and several diuretics) to try and control the symptoms of the disease. Personally I know that these drugs are powerful and have there own set of problems, however for me I can only say that I believe that the saved my life.
I completely understand the fatigue you describe and I know that everyone here fighting liver disease understand that one too. It can make even the simpliest movements feel like a marathon. I also experienced joint aches, muscle cramps, headaches, and other flu like symptoms.

I really hope that you can get medical interventions and answers to what is causing your problems at this point. There maybe avenues you can take even with no insurance that will help you with your medical expenses. Some people here have had really good experiences with teaching hospitals and there are some organizations that will help with medical problems.

Good Luck on this journey.


Regular Member

Date Joined Mar 2008
Total Posts : 134
   Posted 12/7/2008 7:50 PM (GMT -7)   
Hi!  I have had aih for about two years so far.  It was diagosed when I developed enymes around2000-way higherthan normal--the doctorsaid they were fulminant.   This means that my goose was cooked for surel  I felt real tired and achy with the disease
But I am better now.
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