Just diagnosed with AIH

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Hi! I was just diagnosed with autoimune hepatatis a few days ago at 37 years old. I was given 40mg of Prednisone daily and I just feel lost with lots of doubts. Can I live the rest of my life with this condition? Please share your experiences.

Thanks

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11 Replies

  • Posted

    Which Hep C do you have?
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    • Posted

      Oh okay I'm not familiar with this one in particular I had Hep C and last year was on two strong medications which I had to take for 12 weeks. I am cured thank goodness. But have you google the hep you are inquiring about? Hope everything works out for you. I know it's scary and all but the more you educate yourself and get treatment trust me the better you will feel.

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  • Posted

    Hi, I'm about a decade older than you and was told I had AIH 8months ago. I feel your sense of worry and concern about the future. I try not to get stressed about my health as it only contributes to the problem.

    The main thing is to have your liver monitored by a specialist. It could never be a problem ... or do you have active AIH?

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  • Posted

    Hi Marie. I was diagnosed in 2015 when I was 27. Many people don't have to take medication forever, and your pred will most likely be added to or replaced by azathioprine which is an immunosuppressant. Your pred will also be weaned down over time until the lowest possible dose. When people have reached biochemical remission for some time (usually a couple of years) which is when all of your blood results and liver inflammation are normal, a hepatologist will often trial a period off of medications. For some, they never experience a flare or relapse of symptoms ever again. Other people will, and it can occur even years later meaning that treatment will be necessary again.

    Hopefully you don't have too much liver damage already?

    If you're on fb there's a group called AIHorgUK which is a great community and everyone will be pleased to answer your questions. They also have a good website. It's scary but AIH is a manageable condition, especially if well managed and the right drugs combo for you is found which can take a little while.

    Finnian

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    • Posted

      Also if you *do* already have signs of fibrosis, they can over time be reversed and the liver can heal itself. smile

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    • Posted

      Honestly there's nothing to be scared of. As long as you do what your consultant tells you to do you will be fine. Most people with AIH barely know they have it, have a normal life expectancy, have a normal work life- some can even drink alcohol in moderation. I know lots of people who have had transplants and have advanced cirrhosis who live a relatively normal life. But really, do join that group if you can- it'll put a lot of your fears at rest.

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    • Posted

      I was going through the thread. I m glad i found you. Have joined the FB Group already. My wife was diagnosed with AIH recently. I have read alot on the internet about it. Treatment is in progress. But i would like to learn from you, if you wudnt mind, as you have gone through it yourself. We can communicate through this thread, or another forum, which ever u suggest please.
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