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Are there any other people here who have autoimmune hepatitis type 1? I have only found out I have it recently, and I am frankly very panicked about it. I am a young, professional woman in my thirties and now I have been diagnosed with this liver-damaging disease that I can’t help but think is going to kill me. I have come here just looking for a bit of support, and perhaps hope that everything will be all right.

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Please know that you are not alone. And with the right treatment, autoimmune hepatitis type 1 can usually be controlled very well. There is no reason to believe that you will die from autoimmune hepatitis, though I am sure that you are aware of its possible complications. The complication rate is not very high. Did you know that 70 percent of patients reach remission within three years of starting treatment? Don’t worry too much!
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Thank you. I guess I needed to hear something other than the horror stories that you come across in so many places - especially on the web. I dislike taking drugs, and I am especially worried about the side effects of the prednisone, though I have had none so far. I did hear that side effects are more common with long term use. The thing you said about remission… Does that actually mean that I might be able to come off prednisone if I go into remission? That would be really wonderful. My doctor did not mention this at all!
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Dear Lydia1553: I too just got diagnosed last year with Autoimmune Hepatitis and they found it only by accident when taking out my gall bladder. I was also told and did research and found it that you can go into remission but also the article said you won't stay in remission all of your life. One thing about Prednisone- it eats of your calcium at an alarming rate so take calcium. I am taking 2500 mg a day but your body can only absorb 600 mg at a time so it is a pain to keep taking it all day long. My doc says CalTrate is the best. STay away from Artificial Sweetners, gluten (if possible), sugar (honey is okay) and use cocoanut oil to cook with as olive oil breaks down - I use EVOO (extra virgin olive oil) for salads - keep in dark bottle in refrig. It gets solid when cold so plan to take out a little before using it. I eat as many fresh vegies as possible - grow my own. I had a distant cousin who, 7 yrs ago, discovered she had it but it was to late and they didn't have Imuron (anti rejection drug for organ transplant patients) (can't remember generic name). I take it and 7 mg of Prednisone. I started off on 40 mg and WOW what an energy boost - it was great for a short time. Dangerous to stay on that level.
Best of luck to you - I feel fine, suffer from arthritis which comes with it and old age (I am 64) but I am a very active lade, ride horses, garden etc so don't let it slow you down. God Bless.
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