New diagnosis of AIH

Greetings,
I am new to this forum.
My Wife came down with AIH in late July when she became jaundice. She was admitted to the local hospital. At first the MD thought she had gallbladder disease but there were no stones. They finally concluded she needed a liver biopsy, but were reluctant to do it as they felt if they found something exotic they could not treat they would have to transfer her to UPMC (Pittsburgh) and by then she may be even more ill. So they decided to transport her then. Ultimately she was diagnosed with AIH and started on 40mg of prednisone, 40 mg of Furosemide, 100mg of Spironolactone , 1000mg Ursodiol, all daily.
The Prednisone has been cut to 15 mg, and 500 mg Cellcept added. Her lab work is going in the right direction: SGOT Alt 65 Ast 84, ammonia 18 (normal), INR 1.5, bilirubin 4.3.
Her current symptoms are Being VERY tired, Edema in both lower legs and feet 2+ and Ascites . Her voice has become very weak and I am wondering if the excess abdominal fluid is pressing on her diaphragm and making it difficult to speak loudly. I am wondering what others experience regarding tiredness and a weak voice.
M

Welcome M,

The only time I was truly fatigued was when the jaundice set in (so I was lucky).  I'm generally one to disregard any feelings of being tired.  As per your wife's weak voice...my throat got a little funky when I was on the pred.  My tonsils disappeared (I have always had very pronounced tonsils---they had returned once my pred lowered) and it wasn't quite right but I don't recall being less able to produce a louder tone.  It is quite possible that the fluid is affecting her vocal chords.  In any case, a whole lot of the negative symptoms of the pred go away when you get to 10mg and lower.  It may also be a result of her fatigue.

The furosemide is for the edema and ascites.  I never had much luck with it and just dealt with my twice sized knees every night when I got home from work.  Have her keep her legs elevated when possible.  She should also try cutting the amount of salt in her diet.  Is she on aciphex or prevacid or another proton pump inhibitor for her stomach?  The pred is really hard on stomach lining.  She should also be on a calcium supplement with Vit D. to help her bones out.  They usually order a baseline bone density scan as well which she'll likely have every year or 2.

If you want to look up old posts, search the site for AIH...there've been quite a few!

I never had the soft voice, but I must tell you that the fatigue is unlike normal tiredness.  I am normally a peppy, restless, squirmy sort of person, and when the hepatitis first hit, I was too tired to even walk/stand very much.  And I didn't feel particularly sick (like with the flu or something).  Just profound fatigue.  So if your wife seems "ok" but keeps complaining of tiredness, please  please be patient.  I had the tiredness for about 9 months, even after my enzymes became normal.  Currently (3 years after diagnosis) I am back to my usual energy level, so it isn't permanent, just lasts "forever".....

Hang in there

Pix

My wife's labs are improving in fact the SGOT's will probably be in the normal range next week. Prednisone has been reduced to 10mg and Cellcept increased to 750 mg daily. BUT she is weaker and her voice is also weaker. Fatigue is greater. Is this a normal response? When can I expect her strength will begin to return?
Michael