Hepatitis Autoimmune Community
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Avatar universal

really need some encouragement

Hello, I am new on this site. My husband was diagnosed with AIH and just strated the treatment. He has ASMA -type. At this moment he is ok. I would really like to knoe if there are persons who have this deasese for several years. What did you do? Your treatment? Doctors? What's best to expetct and what's the worst? I really need someone to tell me that it may be ok.
4 Responses
Avatar universal
I have AIH & have been in treatment since 2002.  Started out with larges doses of prednisone & Imuran.  Cut back on the predisone as doctor permitted & am now down to 2.5 mg of prednisone & 50 mg of Imuran ( a generic version of it).  All is fine now with me & doctor informed me last month that as long as I stick to regiment should be no problems, I am not going to die from this.
What meds are your husband on & what did his biopsy say?
Avatar universal
He takes now Imuran 100 mg and ursofalk, an easier drug than prednisone. The doctor said that he will put my husband on prednisone only if it is needed. The biopsy was pretty good. It indicated a chronic hepatitis, but with very low fibrosis. I read on various sites about a kind of scheme in which you can find out the exact state of your AIH. My doctor didn't say anything about this (scoring). did you do something like this? Are you on some kind of diet?
Thank you very much
560748 tn?1226864517
Hi, i have been diagnosed with this from the early 90's.  i also have primary biliary cirrosis and other auto immune probs.  The meds your husband is on sound fine.   I am on 750 urso three times a day now.. I am 52.  I am now on Cellcept (mycophenolate Mofetil) 1g twice daily.  This is because the other meds like Azathioprine and Mercaptopurine disagreed with me intensely and I turned a beautiful shade of butterscotch and was oh so ill.  This new drug has less chemicals in and suits me very well, in fact I walked 6 miles in Jordan as opposed to not even being able to get out of bed.  Your husband just has to enjoy life to the full and I expect he will have a long and happy one, but the positive side is essential.  Exercise is crutial even if it is swimming or a walk etc.  AIH is very little known about but I can tell you that I feel very well at the moment and I dont care how long this feeling lasts, I am out to enjoy it.  i have told many people on this site that I gave up coffee for 2 months and my consultant ordered me to go back on it for at least 2 cups per day, to my horror (i hate the stuff).  Apparently you develop nodules on the liver (which I have) that can turn cancerous in some cases, coffee has been scientifically proven to help prevent this.
If your husband doesnt feel well, always question.  Always see the doctor.  Often it is other problems like needing an ant-biotic to fight off a normal virus, sometimes it needs a change of meds.  Never be worried about challenging.  Look on the British Liver trust site on a piece written by Prof. James Neuberger.
Avatar universal
thank you very much. it means a lot to me that other people with problems write to me. i try to be optimistic. maybe with this new technology and stuff some new drugs may be discovered. it's hard on us because we wanted to have babies and now i'm worried, first because of the medication and second because of what the baby may inherit.
anyway...goodluck to you all...i am watching daily the site
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