Autoimmune Hepatitis - Immune Disorders Message Board

WednesdaysChild · 08-24-2006, 11:58 AM

Does anyone here have this? I have a big suspicion that I might have this and would like to hear from someone as to how they were diagnosed and what sort of syptoms they had.

My biggest red flag right now is the fact that I have high bilirubin (conjugated and unconjugated) and just recently I tested positive for ASMA (anti smooth muscle antibodies). I also have fatigue and liver and joint pain.

mfife31 · 08-27-2006, 07:49 AM

My son is now 10 yrs old and was diagnosed with AIH in November 05'.They began monitoring him Jan 05 from high alt and ast levels.He had swelling in his feet, and arms as well which they tell me is not common.He also had lo platelets and high bilirubin,fatigue,spider anginoma,etc.THey say one of the best diagnosis is made from a liver biopsy. By the way what about ana, was it positive? mfife31

WednesdaysChild · 08-27-2006, 04:05 PM

Hey mfife,

Thank you so much for responding. i am truly sorry to hear about your son having AIH. I hope he is responding well to treatment.

I only tested positive for the ASMA (smooth muscle antibodies). I was negative for the ANA (nuclear) and AMA (mitochondrial) antibodies. My IgG and IgM were normal, indicating no active infection of any kind, so the presence of the antibodies is weird.

My liver enzymes were normal a year and a half ago, and they will most likely be repeating my LFTs. I assume the immunologist will want to send me for a liver biopsy as well. I had an abdominal ultrasound that was perfectly normal about a month ago. I should also mention they checked my blood serum proteins and my gamma globulins were normal, and not elevated as is found in AIH. My beta globulins were low.

My brother has Crohn's disease, which is another autoimmune disease, thus increasing the liklihood that I have an autoimmune disease as well.

I will be seeing my immunologist sept 6th and I'll keep you up to date. Please feel free to communicate more about your son as I am interested to know more about the treatments envolved in AIH.

Best wishes,
weds.

mfife31 · 08-27-2006, 10:27 PM

MY sons ana and smooth muscle were highly positive, along with Igg, p-anc ,alt ,ast , high bili,low platelets,etc.His spleen and liver were both enlarged ,acites,sweling and subconjuntival hemmorages.Now his spleen is enlarged down to only 3 fingerbreadths past costal margin.(Initially it was 8)He had a second biopsy in June and was really no change.He has bridging fibrosis and the last report said 3 out of 4 .He is down to 1 1/2 mg pred e/o day and 25 mg 6 mp e/o day.We had some trouble for a few months because the 6mp was in toxic rangehad had to keep reducing it to where it is now.(anything over 400 is toxic and his was over 800)Other than that he is doing pretty well now and blood labs look great, best they have been.Now if we can get this spleen of his down , it would be great.Its a bummer for him cuz no football and thats all he has ever played and this was his little brothers first year.He just wants to be able to rde a bike and play around without having to be so careul.I told him it wont be huge for forever.Ok lol I see i am rambling.Good luck on the biopsy and your appointment ! Mfife31

WednesdaysChild · 09-24-2006, 08:08 PM

Sorry it took so long to post.

I had to reschedule a meeting with my doctor for a later date as my doctor was heading out of town. I did manage to meet with him a couple of weeks ago and he says that the smooth muscle antibodies are not significant but he is rerunning several tests to be sure.

I now have to wait until early november to see him againa nd find out if there are any significant findings this time around. He believes I only have gilbert's syndrome and that is all.

I will check in once I find out more.

All the best,
Weds