Diagnosed With Aih In November 2009

My journey to AIH diagnosis started in June 2009.  I had just finished a triathlon, a race I had been training for over a year.  Yes, I finished it, but collapsed at the finish line.  I remember thinking that after training with a team and working with experienced coaches, I shouldn't feel so exhausted while everyone around me looked so great.  I then figured I had an off day, and that I'll feel better after the next race.

About a week later, I went to my primary care physician for my yearly physical.  The next day, she called to tell me my liver enzymes were slightly elevated and to come back in a week for another blood test.  After a few weeks of my enzyme levels slowly and steadily climbing, she sent me to a hepatologist.  My hepatologist did a battery of tests over six weeks or so, ruling out hepatitis A, B, and C.  She thought it could possibly be hepatitis E--I'd never even heard of hep E!  There was also discussion that it could be mononucleosis.  The strange part was, I did not feel sick, or look sick, but my elevation enzyme levels were indicating I was getting sicker and sicker.  Finally, I couldn't avoid the liver biopsy any longer, and the end result is AIH.  My liver has some scarring, but thankfully, did not advance to cirhosis.

I started out with 40mg prednisone which really boosted my energy, and aside from my crazy appetite and some weight gain, I've tolerated it well. I actually didn't realize how low energy I was until I started the prednisone.  After about 2 months the doc gradually decreased the dosage to 10mg.  I also started Imuran which did not go as planned.  After 2 weeks without incident, I had an allergic reaction which caused pain and swelling in my legs and flu-like shivering and fever.  Now I'm taking Cellcept, and so far (fingers crossed) no allergic reaction.  I've experienced some pain and swelling in my underarms (have no idea if this is even related to Cellcept) and some minor tingling and numbness in my legs.

I feel fortunate that I am back to my workouts, although I'm really listening to my body and taking a day off when I feel tired.  I try to eat a healthy diet, although at times it's hard to resist the sweets which I love.  And the prednisone keeps me in a state of constant hunger, so that doesn't help.   I have my ups and downs, moments where I don't feel well, and other times I almost forget what I'm dealing with.  I'm happy to have found this group so I know that I'm not alone out here.  I appreciate everyone sharing their experience and information. 

Snowpea Snowpea
36-40, F
3 Responses Feb 21, 2010

Hello all<br />
I was diagnosed with AIH just after having my child 13 years ago. I also have had lupus for many years which I do quite well with thankfully.<br />
I was put on prednisone and imuran for many years and things seemed to be well. When my gastro Dr. changed practices I went to a new one whom i like also, he slowly weened me off the medicine since I had no incident in quite a long time. I have been off for about a year and half without incident. Unfortunately I went for routine bloods 6 weeks ago and the enzymes were slightly elevated so we took all alcohol out of my life and retested last week. Still elevated but now slightly more. Hopefully we wont have to start back on the meds I was so psyched to be off of them. we shall see.....

You are lucky to have caught this early. I am in stage 3 liver diease, so have scaring and changes in my liver. I am glad you've been able to keep the life you've had before finding out about the AIH. I've had to make some changes. I wish you the best of luck. I was also glad to find this group.

wow your story is comforting. not all the aih symptoms part, but because i can totally relate. i was diagnosed in january of this year after continuous elevated enzymes and a liver biopsy. my biopsy showed mild inflammation with no scarring thankfully. waiting on a last set of bloodwork. if my enzymes are still elevated i have to start prednisone and some kind of immunosuppressant. i am soo nervous i can hardly sit still. i hate waiting for results. if you ever need to talk i am here!