Autoimmune Hepatitis?

[scot__0__0]

  I am a 25 year old white male.  I have a question concerning a recent diagonsis with autoimmune hepatitis.  I have a problem with jaundice in mid-September.  I got tested for Hepatitis A, B, and C; and had several liver profiles showing highly elevated ALT and AST levels(at one point ~1300/1100).  I was tested for Epstein Barr virus (neg.).  A liver biospy showed minor scarring-no cirrhosis.  I was working up until Sept.  with Toluene, MIBK, and Ethanol in my workplace which led my doctor to believe it was a toxic hepatitis.  I left that job before signs started to show and got progressive worse.  After the jaundice, came severe joint pain, fatigue, nausea, etc.  The doctor then finds elevated WBC count, conducted a serum protein electrophoresis tests and because mother has Lupus; he decides on the autoimmune hepatitis theory.  I am currently on Deltasone (40mg/day) and Azathioprine (50mg/day).  The plan is to slowly reduced the dose of steroids to 5-10mg per day and stay on the Imuran indefinitely.  I am feeling better, no jaundice, lowered ALT/AST levels, etc.  I understand this is a chronic condition, what about a long-term prognosis.  
  My questions are:  
  1) Do you think this is the correct diagnosis, is there a autoimmune specialist?
  2) Do the side effects of the medicine out-weigh the benefit received?  
  3) Can the use of steroids cause sterility or this disease be passed on to my offspring?
  4) Although not a heavy drinker, should alcohol be avoided completely?
  Thanks so much for this forum.

[HFHSM.D.-D.M.]

Dear Scott:
Well you certainly appear to have a pretty complicated liver situation and I’m not certain I can answer all your questions but let’s go ahead and give it a try.
“1) Do you think this is the correct diagnosis, is there a autoimmune specialist?”
Certainly, I’m not in a position to tell you whether you’re diagnosis of autoimmune hepatitis is correct.  Typically we do several tests including the ANA and ASMA (anti-smooth muscle antibody) and anti-LKM.  These tests are typically positive in someone with autoimmune hepatitis and I suspect your physician did these tests.  I do agree, however, that if your viral serology’s are negative, and if you have “responded” clinically to steroids, this is highly consistent with autoimmune hepatitis.  Most liver specialists have a fair number of patients with autoimmune hepatitis in that this is a relatively common problem that liver specialists see.  There are a handful of hepatologists, mainly at major universities, who are in a position to say they specifically specialize in autoimmune hepatitis.  
“2) Do the side effects of the medicine out-weigh the benefit received?”
If you have autoimmune hepatitis and you were jaundiced with liver enzymes over a thousand, you probably were closer to complete liver failure and death than you might realize.  In that case, there medications were probably life-saving and there is simply no question that the benefits of the medication outweigh the risk.  
“3) Can the use of steroids cause sterility or this disease be passed on to my offspring?”
This is really two questions and we’ll comment on both.  Your first concern is whether steroids or imuran can cause sterility.  The likelihood of either drug doing so is low.  Steroids, in general, are not associated with sterility.  There is not quite as much experience with imuran as with steroids.  In mice, very large doses of imuran lowered sperm counts, but that hasn’t been a significant problem in humans with doses commonly used.  In any case, these medications have potentially been life-saving for you so I’m not certain I’d have you worry about this too much right now.  
Your second question is whether autoimmune hepatitis can be passed to offspring.  This is a complicated question.  We don’t really think of autoimmune hepatitis as being “genetic” in the classic sense and we rarely see it in off spring and we don’t screen family members.  Having said that most hepatologists know of families where several members of the same family have autoimmune hepatitis and in those settings we wonder if there isn’t a small genetic component.  In any case, it is very unlikely that you would pass autoimmune hepatitis on to one of your children.
“4) Although not a heavy drinker, should alcohol be avoided completely?”
Your questions aren’t getting any easier as you go along.  If you ask a hepatologist whether any patient with chronic liver disease should avoid alcohol completely, the answer is likely to be yes.  Having said that it is hard for me to feel there is significant harm from an occasional (several times a year) alcoholic beverage as long as your disease is in remission.  I certainly would not ever average more than one drink a week.
Your final concern about prognosis is complicated because the severity of autoimmune hepatitis varies enormously from one individual to another.  Some patients respond well to therapy, respond well during the taper and have few or no relapses.  On the other extreme are patients who never really respond well and end, in some cases, end up requiring a liver transplant.  How you do over the next year will probably give us a lot of insight into how you well do over the next couple of decades.  It sounds like you’ve had a good course so far and we’ll keep our fingers crossed that you have a responsive form of autoimmune hepatitis.  
I hope the information is helpful to you. As always, if you have additional questions or more information, feel free to post the material back to MEDHELP or you are always welcome to contact us directly at Henry Ford at [phone].
This response is being provided for general informational purposes only and should not be considered medical advice or consultation.  Always check with your personal physician when you have a question pertaining to your health.