Possible autoimmune hepatitis - British Liver Trust

British Liver Trust

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Possible autoimmune hepatitis

JannieM profile image

Hi all. I got my autoimmune results back and my actin antibodies are high, at 26 when they should be below 20. This is a huge blow. The mitochondrial tests came back negative. Seeing the heptologost on Friday. My gastro doctor tells me the fatty liver is unrelated, which surprised me. So is this two conditions not one? I think I have to have a biopsy. Does anyone have experience of this? Did anyone find that diet helps? What are the best steroids to take with the fewest side effects? Thanks. I'm really gutted. The only positive is that I know I don't have fibrosis, as already had the fibroscan. Also worried will now fail my medical and lose my job, which I love, to add insult to injury.

6 Replies

Hiya, I have this and was diagnosed last November. If you didn't know already there is a Facebook page called AIHorguk which has helped me tremendously. The people there are very supportive and answer many questions to answers you won't find anywhere else on the internet. They are my lifeline and there are many things to read about in the file section including research for this. It's such a shock to get this, mine was out of the blue as I became jaundice and was admitted to hospital and diagnosed then with test and a biopsy. To be sure it AIH they do the biopsy to create a bigger picture with the blood results to diagnose this correctly. I hope it al goes well for you, good luck and maybe see you on the fb page xx

JannieM profile image
JannieM in reply to Freyaviking

Many thanks, I will check it out. How are you doing with the treatment? I'm terrified of suppressing my immune system.

Freyaviking profile image
Freyaviking in reply to JannieM

I think I've been lucky compared to others as responded well to treatment and have gone back to work full time. its scary thinking about it all really but it does get better on the lower doses. My advice would be try budesonide instead of prednisone steroids I wish I had be a bit more firm on that with the docs as less side affects. I'm hoping to change to it at a later date and change also change to a different immune suppressant but they won't do it now as they just got my bloods under control. When's your biopsy?

I'm seeing the specialist on Friday and hope to get in for a biopsy in the next few weeks (I'm not currently living in the UK so paying, but it might be faster) if he recommends one, which surely he must. Which autoimmune blood tests did they do with you, if you don't mind me asking?

Yeah, the issue with work is that they might send me home to be treated...and since being treated can be forever, that might be it for my career here, which would break my heart, but better than this killing me. I'm also worried about having to give up my dog because of the immune risk, which makes me cry to even think about.

I got diagnosed with AIH ~ 9 years ago and despite a very bad initial dose ( I was jaundiced on admission to hospital), I went straight into work (after 2 weeks in hospital) and did not have any time off. Managing fatigue is usually the biggest issue for people with AIH.

Budenoside is not suitable for everyone and in fact if you have cirrhosis will not be prescribed as it works in a completely different way to pred. However, I see you have not got fibrosis, so it is a possibility.

There is a Facebook group for people with AIH, so they may be able to reassure you with regard to the dog ownership. I am sure there are plenty of people with AIH who are dog owners.

As for it killing you, as long as you respond to meds (and there is no reason why you shouldn't since there are many lines of attack in this regard) and you keep taking them, you should live the same life as anyone without it. Diet, I have been repeatedly told makes no difference, but you should try to eat healthily- I don't eat a lot of red meat.

I can't comment on your blood results since I am unfamiliar with them. Diagnosing AIH is a complicated issue. They will first try to rule out other causes, Hep A-H, alcohol, drugs etc and then look at bloods along with an ultrasound and a biopsy if they want to confirm the diagnosis. Usually the ALT and the IgG are two of the most important blood enzymes that will be looked at, but not the only ones.

Good luck and try to worry less, you can live normally with this. You may just be able to manage less than before and have to adjust your expectations accordingly. I wish you all the very best :)

Hiya, I had a dog and there is no problem keeping one. As for blood I was jaundice dovall test were done in the hospital. There should also be no need to return home...plenty of people are treated for this all the world. The fb page is good to allay you may have. Xx

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