AIH And In Denial

Over a period of 2 years elevated liver enzymes occasionally turned up in my bloodwork.  3 different docs grilled me about my alcohol comsumption, and I don't think I convinced any of them that I was not a drinker. But I was feeling fine.  Then a small breast cancer was dx and I had a lumpectomy with 6 weeks of radiation.  Not even 1/2 way thru the radiation I was paralyzed with fatigue and a general feeling of unwellness. The rad dr and nurses kept encouraging me to excercise when I could barely make it thru a day of work. Each day I worked, went to radiation and went home to bed at 4:00 in the afternoon. Weeks after radiation was over I still felt awful. That led to several specialist referrals and many, many tests. It took from Dec to June  -  with a liver biopsy  -to finally dx the AIH.  My gi doctor told me on the phone...then he chuckled and said I was his first AIH in 20 years of practice.   Needless to say I immediately researched both the condition and an experienced doctor. (I found a great hepatologist at a University Medical Center about 1/2 hour from my home.) That fist 'flare' gradually subsided by September, and I thought (hoped & prayed) I would be one of the lucky few who never get it back again...but I later found that I was in denial, and it was hurting me.  All was fine for about a year...then started to get infections (colds, sinus, lung including two diff pneumonias) and at the same time my liver enzymes were going up...this lasted one entire year.  Finally, in Nov 09 I started on Prednisone and Azathiaprine.  Felt better in one week and fabulous in two.  Now it's time to start the pred wean. It has been 3 tough days with symptoms of fatigue, joint pain, lightheadedness and pain all around the liver area, even to the back. On this 3rd day it  seems to have subsided a bit, and I am hopeful tomorrow will be even better.  I have learned that the Pred wean can be difficult and slow, but it is necessary for you body (adrenal glands)  to resume functioning after being on Pred for months. I'm 64 and have plans for all sorts of things I want to do after retirement next year.  I will do everything possible that will allow me to fulfill those plans! 

Note:  My Alt and Ast have gone to 140 at their highest.  I have heard much higher values from others, and for a long time I thought I was being a whimp since my values were low. I have found that the numbers, first, do not indicate the seriousness of the condition of your liver. My doctor has also assured me that the numbers do not correspond to how good or poorly one feels.

When I read of young people with an AIH diagnosis it breaks my heart.  Even though I still work, my children are raised and life makes few other demands on me.  To be young and have to handle such things as enjoying your free time with friends, getting married and raising a family with AIH is unthinkable!  My heart & prayers go out to all.


PLily PLily
61-65, F
2 Responses Mar 5, 2010

I was diagnosed in 2006 and was very ill to the point I was told that I may die, I was also encouraged to sign up for a transplant it was horrifying. My ALT & AST were in the 800 I had so many Doctors and tests everyday plus a liver biopsy in one week I could not believe it. I was put on meds and sent home I was in denial for over 2 years I was very angry as well. My husband was too and neglected me and my kids still do not believe I am sick. Well I got better a lot better my enzymes went back to normal and eventually I was only taking 50mg of Imuran for over 2 years. I still felt the severe fatigue and could not resume my life as it had been before because of it. Now I am in a relapse back on all the meds feeling aweful, and hopefully will be able to get off the prednisone soon, at I have a hard time tolerating it. I understand it is just one more bump in the road I am no longer in denial as my children still are, my husband has come around as he became ill and now understands it took that for him to realize. I deal with this by taking one day at a time, that is the best one can hope for. Hope all goes well for you and you feel better.

I think dealing with this diease is mostly about attitude. That and keeping yourself informed.