Autoimmune hepatitis scare

I'm new to this forum and think it's great. My problem: My GP just told me I probably have autoimmune hepatitis as my GGT is 107, IgM is 5.55, Mitochondrial Ab is positive, and Mitochondrial Ab Titre 1:640. She gave me the impression that I have a much shortened lifespan and will spend the rest of what is left of it on prednisone. I've looked into this and corticosteroids have terrible side effects. I have to wait two months to see an internist. Is there a natural way to deal with this other than the steroid route?

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  • Hi there, first of all I do have AIH and have had it for 9 years and in all that time I have never been told to expect a shorter life expectancy (and I have asked), so I don't understand why you have been told this.

    Second of all, the steroids are not usually the long -term medication prescribed, because as you say they have many side effects. I have been on them three times now and each time the side effects have been different. Usually what happens is that the steroids are used to bring down the inflammation and this can take a varying amount of time depending on the severity of the inflammation and their individual response to the steroids. Once it is clear that the steroids are doing their job, then a second drug, usually azathioprine is introduced and this is the drug that is then used as a maintenance drug to keep on top of the ongoing attack on your liver from the immune system.

    Thirdly, it is the ALT level and the IgG that are used as the liver enzyme markers to determine whether or not you might have AIH before further investigation is done. AIH is complicated to diagnose and usually they rule out other possibilities before confirming that AIH is the diagnosis.

    As for alternatives to steroids, I don't know of a natural route and remember that while there will be a long list of side effects, no one person will experience them all. My initial attack was pretty severe and I was on pred for 9 months. These days the drug protocol has changed and it seems most people seem to be on pred for at least 12 months.

    Please be reassured this is a manageable illness, but without treatment, you will feel rubbish and are unlikely to go into remission.

    I wish you all the very best and hope it all goes well for you :)

  • Thank you MC1189 - this gives me some hope. I'm glad that the steroids are keeping you in remission. So glad you responded!

  • Hi Carly 92,

    I'm not sure what you mean by keeping me in remission, since I am only familiar with this term being applied to those people with cancer. For cancer, my understanding is that you are only in remission when you have been clear of the disease for 5 years. However, having just looked up the word "remission", I see it can be applied to a lessening of symptoms, so if that is what you mean, yes I have experienced remission for the last 9 years. I just didn't want you to have taken away the wrong impression from my post. Once correctly diagnosed with AIH, you are most likely to have it lifelong and require treatment.

    Secondly, steroids are not keeping me in remission. I only take azathioprine (not a steroid) for that. Currently I am experiencing a "flare", which means I have to take steroids for a short period of time (so far 6 weeks), but as I said before, they try to avoid giving you steroids for management of AIH because of the long term side effects.

    Some people will go on a low maintenance dose of steroids, but this is usually to support another drug that they are taking.

    Prednisone is not the only steroid available. There is another drug called budesonide, but which one is given to you will depend on how you present initially (i.e. how severe is the attack) and how you actually respond to the medication.

    Apologies if this is information overload, but I hope it clears a few things up. Please ask if there is anything you want to know :)

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