High Bilirubin/Normal AST/ALT

[9743km]

Hello.  Looking for anyone who has any answers or who has gone through the same thing.  I am 36 diagnosed w/Auto Hepatitis in March.  I am on 12.5 mg of prednisone and 200 mg of imuran/day.  Anyone on that high a dose of imuran?  Well, finally my numbers for the liver have all gotten to almost normal.  Maybe 5 pts to high, but my bilirubin is 4.0.  Way, way to high.  Dr. thinking it could be due to toxicity being created from imuran.  They are doing blood tests in the middle of Nov.  He doesn't seem to be "overly" concerned, and that drives me crazy.  My bilirubin was normal, and in the last 3 months has been creeping up.  Anyway, anyone been battling autoimmune for a long time.  Any helpful tips??  Any diet tips?  My Dr. seems to think the meds are working just fine, I don't need to be overly concerned w/diet, etc.  I diagree!  Just no alcohol, no smoking, no fried foods he says!!!

[cat33]

I feel great right now. How about you ?

[9743km]

How are you feeling?  Hope you are doing okay.

[cat33]

Have they suggested an eveluation for transplant. Because that would get you listed even if you don't need one for years. It just depends on the progression of the disease and the symptoms. So far mine are minimal symptoms , compared to other people. I just have the encephlepathy if I forget my medication, and some water retention. Which I take a pill for. They just told me to keep my weight at the same level. If there are changes in either direction that could be a problem. That has been hard for me to do since the diet is so bland. I can have some protein on occation. I had a hamburger today it was so good. Tomorrow back to celery ,tomatoes ect................. I know how frustrating it is not to know what's going on . Don't have a clue what the endocrenologist will say .I was told to prepare to visit with her for about 2 hours. And all she has to go on is about 25 pages of labs from the Mayo Clinic you would't believe the mountain of paper work I have from just this past 4 months. How are your eyes looking. any comments  from Dr. about that. Do you have a gallbladder? Your billirubin really goes up when there's a problem with that and some people don't have symptoms other than billirubin going high. Oh well that's life for some of us. Take care. cat33

[9743km]

Everything you said, makes complete sense.  I was tested every 2 weeks for various things as well.  Now it has moved to once/month.  So that is all there doing.  That is just part of our everyday life.  Blood tests.  I am doing okay.  I guess I'm just a little concerned about this bilirubin issue, but in a week they'll test me again, and go from there.  I'm just wondering if something more is going wrong.  I guess the waiting is the worst!  I hate that it was going great, and now it has gone the other way.  Frustrating!!!

[cat33]

Yes there is the liver transplant coordinator who is assigned to my case. I can call her any time. And believe me I do. They did tell me before I left they do testing every two weeks for various things. So this is routine.They will be keeping track of me through my Dr.s here.And lab work .I believe they said I would have to go in about every 6 months to be seen by them. I also have a case worker (Nurse) assigned to me by my insurance company .I can call her any time as well. She's been very helpfull. And of course my husband who has been there for me at all times. Because when my ammonia level goes up (if I forget to take my medication) I get encepalopathy and my memmory is't worth a hoot. I try not to forget it but sometimes if were traveling I cant take it because it gives me the runs. So when I get back I have to double up to clear my mind. So he's there for me incase I forget to dot an i or cross a t. Just kidding. I'm am doing just fine anytime I tell anyone they can't believe it.

I'm sure the liver test is to make sure it is still functioning to their standards. And kidneys tend to go bad when you have liver broblems and I have had kidney problems in the past.    Let me know how you are. cat33                    

[9743km]

Is there someone at the Mayo Clinic, a Dr you were working with, etc that you can call?  And ask them what they are requesting this for?  I will tell you this, they have your best interst at heart so definitely do the test...How are you?