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!!!

[9743km]

Hey there.  All of my test results came back.  They all point to imuran toxifying my body.  They actually think I was having a severe, severe allergic reaction.  Since I've been off of it for a couple days my bilirubin has come down 9 pts.  I am almost to normal level agains.  Thank you Lord.  They are starting me on a new med friday, and hopefully it'll go well.
How are you doing?  I hope well!  Talk to you later!

[cat33]

Let me know how the blood work turns out. Hope it's fine. Then you won't have to have another biopsy. You did say you had one before. Right? They really set them up fast I had to waite about 2 months for my first one then after they messed up and wanted to to go back . My husband insisted on another Dr. and to have it done using an ultra sound. Which they were able to do in 1 week. Although the waiting time for results seemed like like forever. Hope you don't need another one. Talk to you later. cat33

[9743km]

Glad to hear you had a nice relaxing Holiday w/your husband.  Sometimes just eating alone and being w/each other out of the hustle and bustle is enjoyable!!!  

I go for my blood tests tomorrow AM to see if being off the imuran for a couple of days has helped my bilirubin decrease.  If so, then they will start me on a new medication!  My Dr. told me to call my nurse in the afternoon and he will have the low down for me...If not, I have to have a liver biopsy sometime in the week!

I'll keep you posted....Enjoy your week.

[cat33]

My Thaksgiving was great..My husband and I ate alone . I thought my son and his family would be at her moms place so I did't invite them. My son later called and told me they had'nt gone to her houe till 6: 00 so they could have eaten here. Just Said sorry you know your always welcome here and I almost always haver something cooking. Actually these days two meal diet for my husband one different one for me. Then Saturday we went to my mother-in laws for a family gathering. It was very nice . Since my brother was in the hospital for a rupturet ulcer I was able to visit him. He lost alot of blood and looked very pale but he was ready to go home.

Did some reading on imuran sounds like it has alot of side effects. What will they give you know. Hope your doing well . It sounds like it. I 'm fine too.  Keep in touch. cat33

[9743km]

It definitely sounds like you need a new GYN!!  Oh my gosh, that is funny what your husband said about the lady in the obituaries.  Hilarious!!!!
I hope you had a good thanksgiving.  Have you done any shopping?  How are you feeling?
Since I've been off the imuran I feel like a million bucks...I Pray the imuran has been my problem.  I literally feel fantastic.  I go for blood tests on Monday, and that will tell me if my bilirubin has come down.  My Dr. will decide then on the next step.  I Pray that all I need is a new medication and hopefully it will work even better!

[cat33]

Glad your tests went well. Just buy youself a twice daily pill dispenser. They work for me, since one of my meds is taken twice a day, and two others are seperate, one morning one evening. Then I seperate my vitamins and minerals into morning and evening. Not a big deal right now. But if I do get a transplant I will need more dispensers. Canceled my appointment with GYN since it was an unnecessary follow up. Then the morning of my canceled appointment. I got a call from them asking me when I was going to make an appointment for my endomitrosis biopsy. I said "what "no one ever told me I had that and I just got back from Scottsdale where they did a complete physical on me. She said she'd call back . Then she never did. All that time I'm in the middle of a panic  attack. I finally called around closing time. And she said I made a mistake it was someone with the same name. Do you believe that. Then my husband said he had read in the obituaries some woman with my name had passed away. I said she probably never got a call telling her she needed a biopsy because they were to busy calling the wrong people. I think its time to change GYN's.

[9743km]

Well I survived the week!  It has been a long grooling day, but I'm alive.  Anyway, everything went great.  My Dr is 99% sure the imuran is toxifying my liver.  I stopped the medication immediately and have another blood test on monday.  As long as my bilirubin has gone down he is going to find another med for me to begin.  So I will be on prednisone and one another.  He told me the other drug works just as well, but it is more expensive, and you don't take it once a day, you take it twice/day.  So it'll be more of a pain, but I'm alive!!!!!!!!!!!!
Happy Thanksgiving...

[9743km]

Thanks...I'll update you next week!  You take care!

[cat33]

Your right . We have to hope and pray for positive things to come. I  had a bone density test about 2 or 3 years ago, and it was fine then. The endocrinologist suggested another one , but again at Mayo since the machines are  probably calibrated differently.  I'll be thinking positive thoughts for you on Monday and Wednesdy Keep in touch. cat33

[9743km]

Hi there.  Unfortunately, I received news like you.  My bilirubin has not gotton any better.  In fact, it really sky rocketed.  So I have an ultra sound and more blood work on monday.  And then i am meeting w/my Dr on Wednesday.  He should have all the results of blood and ultra sound by then.  He'll go over everything w/me at that time.  I'm Praying its something minor, but I have to be a realist as well.  I felt that at the beginning of this process God would heal me/take care of me, and I'm still believing that He will.  This is the first time in my life I've had to really put my faith to the test, and I won't give up now!!
Sorry to hear about your results.  This is just one long tunnel that seems to not end.  We know there is a light somewhere, it is just getting there...I do know that osteoporosis is a major side effect of prednisone, but what a bummer yours is so agressive.  Intravenous meds, huh?  They say that seems to be the best.  Your insurance has just gotta pay for it.  Let me know what happens.  You take care of yourself and have a great weekend!!!  Next week sounds like we'll both have much news to come!

[cat33]

How did your tests go? Of course you wont have answers for a week or so. I got my copy and the kidney part was elevated, Mayo called and said it was fine but they still wanted the mammo results. I told them I had returned the films a week before I went in for the mammo and they couldn't find them. They wanted me to go in for another one. Why? if they can't find the films . I don't know about this lab over here. Went to the endocrinologist on Wednesday got some bad news . I have osteoarthritis, degenerative arthritis and now osteoperosis.She said she had never seen anyone my age with such bone density damage. So now we must proceed with aggressive therepy ,such as intravenous Medications. She was going to find out if my insurance will cover it ,Mayo will approve of it and if they do that type of therepy locally. Otherwise I'll have to travel to mayo and their therepy is once a week. So I'd have to move to Pheonix? Where as the endocrinologist is suggesting an infusion once a year. They do have oral medications but she said they were tough on the stomach and since I had a previous ulser she didn't want to go that way. My bones must be built up before I have surgery because the antirejection such as prednasone break down the bone. I still cant take anything for pain just ice packs. Looking for a spark at the end of this very long tunnel. cat33

[9743km]

I feel good.  Tomorrow are all my tests.  Not as excited about having it done as I usually am.  I just feel like my numbers and some stuff are not going to be the best.  Which makes me wonder what is going to happen or what is happening?  I guess it is the nature of the beast, huh?

[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?

[cat33]

Well I went for more blood work today. Ordered by Mayo to a lab here in town. No one here at the lab would tell me what it was for but I asked them to send me result s, after all I am paying. Right. I also wrote the informationion down and came home to the Net. Turns out they were again checking on my liver and kidney functions. Then I went across the street and talked to  my GYN'S nurse practioner about the mammo. She gave me paper work and called in for an appointment next week but asked me to return for a follow up . Follow up for what ? This was a request from Mayo. The GYN  had already checked me Mayo had checked me. What do they want besides money.???  Please excuse my mistakes it's 2:00 am.  Thanks for listening. cat33

[9743km]

Yes, I will let you know if anything knew comes up.  I wish you the best.  The mayo clinic is definitely a good place to be.  You know your getting the best there.  I guess I should feel Blessed that I have a good hospital near me, and Dr's moved so quickly.  The hospital near me is only 1 of 2 in the state that handle liver transplants, so that helps!  You take care and I'll talk to you soon!

[cat33]

It took the doctors where I live a year before they finally did a bioposy and found out it was cryptogenic liver desiese  Which they now tell me took years to develope into cirrhosis. So I did my research and decided to go to Mayo Clinic for my first eveluation. It was grueling. An entire week of getting up at 4:30 am to be at different clinics by 5:00 am . Then staying all day going from one appointment  to another ,with hardly time' to breath ,between giving blood,urinating in a cup,  and appointments  till 5:00p.m. I have never seen so many doctors in my life. (and I have white coat syndrome). Any way they were extremely thorough and I found out alot about my health besides  my liver. As I mentioned beforeI have to have another mamogram because they saw something suspicios. Have to get blood work regularly and see and endocyenoloist, She deals with glandular problems diabetis and osteoporosis. Which can all be in the area of autoimmune. But it has been really difficult to get all these things done here. This is not like a second oppinion I"m having this done because they don't do liver transplants here (not that I'd let them try) They just seem like oh well you already had blood done you can waite another 3 months for a mammogram!!!!!!!  And I believe Mayo is trying to save me a few trips.I just wish these people would take this seriously. Maybe I can't waite three months for more blood work. On the other hand I want to be on the list as soon as possible. That way if I really do get seriously ill I can stand a chance.


Let me know anything new: cat33    
                                                                                                                                the list and  thats not going to help with these three or four more step.

[tumbleweed1999]

"Urosdiol (aka Actigall) is used to prevent and treat the formation of certain types of  gallstones or liver disease (biliary cirrhosis).  Ursodiol is a bile acid, a substance naturally produced by the body that is stored in the gallbladder." (re: MedlinePlus)

I do a lot of googleing when I need an answer and I trust Mayo, and usually Medicinenet.com.  I expect that once AIHers know that this forum is here we will get more answers and comments on this site.

Glad that you are going to check out the "Brits" -:)  Really good board, as I hope this one will eventually be.

Take care
tmblwd

[9743km]

Thank you for your wonderful comments and for the new website.  Oh yes, I definitely understand what AIH is.  Wish I didn't but I do.  What a bummer it took so long for them to diagnose you.  As soon as I got w/a liver Dr it only took him 1 month.  My total time was 2 months to diagnose.  So Dr's did work fast w/me.  What is ursodial?  I am on the prednisone and imuran.  The imuran (Azathiprine) same thing has worked great for me.  I know a lot of people get sick, etc but it hasn't bothered me much at all.  Well you take care and I hope you are doing well also!  Again, thanks for the website info, I'll be looking at that today!

[tumbleweed1999]

Have been reading  your comments and may I suggest another place to get answers on Autoimmune Hepatitis ?? It sounds like that site will be just what you need.  Don't get me wrong, this is a good place to be, also.
  You do understand, don't you, that the "hepatitis" in Autoimmune Hepatitis has nothing to do with the Viral Hepatitis A,B,C,   AIH is not-viral and non-contagious.  It's like our immune system has become cannilbalistic - it turns on itself and starts destroying the good cells.  

As for finding a disease quite easily, that is not the case.  There are too many that resemble each other.  Some don't find the real culprit for years - go thru a lot of mis-diagnosises.  Sorry, but that's the way it is some times.  It took several years before they finally figured mine out this past Aug.
I have AIH with Primary Biliary Cirrohsis Overlap Syndrome, was started on 40mg/Predinsone, am now down to 20mg and waiting to see if I can take the Azathiprine.  I'm also on Ursodial.

So with all that said - (?) check out (and I will spell it out) autoimmunehepatitis dot co dot uk.  Awesome people where some have been living with Autoimmune for years (20 - 30+).  Also has a great article by the "owner" who has had 2 transplants  and is not yet 30.  So o o between the 2 of these maybe you can get ALL the answers that you need.  Good luck, both of you!!
Tmblwd