questions about AIH

Hi I am new here and have recently been told my blood shows a low positive for AIH. What exactly that means I am still not sure, because I do not know what blood tests were done. I see my doctor today to follow up on the blood work.

One concern I have is did they take you off all medication before doing your liver biopsy?

My mom says that they should and need to. I am nervous about this because I take the medication Luvox for OCD and it is VERY hard to stop taking. I tried to slow my meds but got a massive head aches which made me research withdraw from Luvox and well I didn't realize just how difficult getting off it would be. The meds do help me with OCD but I am willing to do whatever i have to do to prolong my life. I have two kids so it isn't even about me ya know. I dream that I will be healthy enough to have another child in the future as I am not quite 28 years old and not ready to start a count down on life.

TIA
dee

DeeMots

Welcome to the forum. I too have AIH. I believe that a low positive means that your blood work ANA's just not in a high level. It is not unusual for doctors to rerun blood work to make sure that their were no mistakes or to run additional tests.

I believe that I was not allowed to take any medications prior to my biopsy. However I did not take any meds on a regular basis. You should talk to your doctor about your concerns regarding Luvox.

This does not have to be a count down on life by any means. Positive thoughts are very important. I know the fear of the unknown and the overwhelming feelings. I have found that educating myself has helped eleviate some of the fears and the support that I have found here has helped tremendously. There are several people on here that have had this disease for a while and have became stable with the aid of medication.

Good luck with your doctors appointment and do remember do not hesitate to ask them questions. Please keep us posted

Will keep you in my thoughts and prayers.

Lucy

Hi and thank you for the replies! My doctor is having an ultrasound done on my liver tomorrow and he had me redo my blood work. My ANA was 1:80 ....possible autoimmune hepatitis or small chance of lupus. When I find anything out I will post again. TIA( thanks in advance)... sorry different board different lingo I will cut that out. I used to be a regular on some trying to conceive/mommy boards.
Call me Dee.

Thanks again yall are great.

Dee

My ultrasound was normal. My liver levels are normal. The only test I haven't got back now is the ANA. It sounds like I am ok thought, right?
hugs
dee

That's marvelous news Dee, Hopefully your ANA will be fine also. Take care.

Hello Dee and everyone,

I haven't been on in a while...busy! Dee...I wouldn't worry too much about your ANA levels...just make sure you have them checked regularly....and speak with the docs about checking other antibody titers for other autoimmune disorders. The first time my ANA were elevated, (2003), they were at 1:640 That was the only level that was off, they were monitoring me for connective tissue disorders. So I went in annually to a rheumatologist. In hind-sight, maybe should have looked into it more with other specialists but the rheumatologist wasn't terribly concerned since nothing else was elevated. Anyway, I was diagnosed with AIH in January of this year. I had what the doc called a severe first episode, no cirrhosis but severe cell loss. Initially, ALT was 848, AST 748 and high bilirubin (first check was at 9 but by the time I was diagnosed after having blood tests about every other day---had a steady climb to 23.3 (within a 2 week period)). Will be on meds indefinitely but once of the prednisone (only at 7.5mg/day), I'll only be on Imuran.
Definitely not a death sentence though. We, as long as our livers keep respondng to the meds, are expected to have the same life expectancy as the average Joe/Jane! With obvious higher risks but life is short and we should be enjoying it and not stressing too much. As I always say, it could be worse!
Initially, I had some issue with having a chronic illness but I haven't let it stop me yet! I'll be walking my second Breast Cancer 3-Day (60 miles) in a few weeks and have been training as much as I did last year with no problems!

So good luck Dee with solving your mystery! I hope it ends up being that you simply have an elevated ANA (the rheumatologist--and I've seen it online before---said that there is a percentage of the population with some elevation that never becomes anything)...fingers crossed.

Write back so we know how you are!

Take care all!

Dany

I have Lupus and AIH. BOTH SUCK. But I am going to say is "Don't worry till you know there is something to worry about!!!!"
Hugs to all!!
Nicki