Treatment for AIH-has anyone had it?

I saw my consultant today and he wants me to have a liver biopsy to confirm Auto immune hepatitis, which the bloods are strongly suggesting and which he says is now more prominent than the PBC. Has anyone had the steroid/immuno-suppressant treatment for this and does anyone know the likely prognosis of the disease without treatment?

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  • I have AIH/PBC. I was started on prednisone and aza the day of my diagnosis. After 6 months, I was weaned off of the prednisone. At that time, Urso was started for my pbc. Currently I am on 100mg. AZA, once a day, and 300mg of Urso, 3 times a day. I also take other medications, for my other AI diseases. But, I do know, I'll be on AZA and Urso for the rest of my life. ( the first few months of pred and AZA........were terrible. But as soon as I was weaned off the prednisone, the nausea, and other horrible stomach issues ceased. )

    Without the medications, the antibodies will continue to destroy the liver....

  • I have just been DX with AIH on top of my PBC and my Dr has put me on steriods and wants me to start on a immno-suppressant for the AIH, I am concerned about this and its nice to hear about peoples experiences about this.

  • Hi Crundalite,

    I have AIH/PBC, had it for 11 years now, I began when I was feeling sick, and my urine was a very dark rusty colour, I also had itching, and when I went jaundice, I was admitted to hospital. my blood result for liver function was 25 times over the limit for normal.It was the liver biopsy that showed the problem, and I was put on a high dose of steroids, which made me feel so much better, they reduced them, but got worse again, which went on for about 3 years, then I was put on mycophenolate 1000mg a day which I am still on, but was taken off steroids after about 9 years.

    I have asked about the prognosis of this disease, but, it just depends on how your own body adjusts to everything I suppose, I've lasted this long, without a transplant, and been reasonable well, although when I first became ill, my GP told me recently that she did not think I would be around now, so no matter how bad things get, there is always hope. It's been hard at times, and I have had a lot of very low moments, and felt quite ill, but, now, although have lots of hospital appointments, and scans, and cameras down the throat, at least I know, that they are keeping a close eye on me.

    I send all my best to you. x

  • Hello bswave-I think I got that right!

    Glad to hear of your experience too and I thank you for replying.. My diagnosis of PBC has been with me for many years-since 1994 I think . I had become complacent about it so the AIH is a bit of a shock. I expect I will adjust to that in time. I have been having a losing battle with my weight for a long time and worry that the steroids will make the problem greater. Has this happened to you?

  • I was on steroids for such a long time, with high doses in the first few years, as my condition would not improve on a low dose, my weight did go up, and my face swelled (moon face) as I've heard it called, but, it dose n't apply to everyone, you may only need a high dose for a short while, then be put on a lower dose. There are side effects for which I had 2, after 3 years I developed diabetis type 2, which now is a lot better, steroids bring the blood sugars up high, so if you eat sweet things, be aware. I also had cattaracts in both eyes which came on suddenly while I was working, and was told by the eye consultant that steroids did that. But it dosen't happen to everyone, and there are side effects on every medication there is. My weight went down very quickly when the steroids went down, I was on 1 5mg tablet for the last 2 years, went off them completely July 2011. Then my weight was back to normal again.

    My weight when I first became ill went down to 7 and a half stone, normal weight was 8 and half stone, I was so sick with the illness I couldn't eat much. Steroids were a godsend to me, after the first 3 days, the sickness went, and the hunger started, I ate quite a bit, but, felt so well, it was as though someone had waved a magic wand over me, I was so grateful for that. My weight finally reached 10 stone. But dont forget, thats long term high dosage.

    The doctors do not like you to be on steroids for as long as you have to. So please dont worry too much about it, I'm sure they will help your condition, and if you do put on weight, it wont be for always.

    With all my love and best wishes

    Brenda. xx ps I hope it has helped, please let me know how you get on.

  • \thanks so much. You are a darling!

  • I just wanted to say this was a very reassuring letter of encouragement, it also helped me!!! Thank You! Best wishes!

  • I'm glad that has helped you.

    Best Wishes from me too.

  • Have a look on Page 33 of this site. I posted a question on 21.12.11.

    "Anyone out there with AIH crossover PBC? How common is remission after treatment?"

    Have a read through. Hope it helps. I am doing fine at the moment on 100mg of Aza and 1000mg of Urso. Take care. X

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