Aa
High Bilirubin/Normal AST/ALT
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!!!
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
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!
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.
Let me know anything new: cat33
the list and thats not going to help with these three or four more step.
"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
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
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!
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
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
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