Diagnosed AIH a year or so ago but yesterday I had a fibroscan and the results were 4.1!! Normal. Do you think medication with be lowered?

[192orchard]

Fibroscan result

[AyrshireK]

That's great that your fibroscan reveals no damage has currently been caused to your liver.

Whether a reduction of meds will be possible will be up to your liver doctor & yourself. It's the medication that is keeping your immune system tamped down.

Some people do manage to reduce or remove meds BUT with Auto Immune Hepatitis there is a high probability of it flaring again and once that happens it usually means a return to very high dosage of steroids and immune suppressants for life.

AIH is a life long condition, you need to keep your immune system from carrying out it's attacks on the liver and that's what the meds are doing.

If you arn't already a member (and you do Facebook) there is a fantastic AIH support group on there with almost 3000 members. Admin are all fellow AIH patients and they are supported by some of the top doctors working in the field of AIH treatment and research and certainly the discussion about going medication free pops up from time to time. Group is private so no one else on your feed sees your discussions on there. They are a fantastic, supportive and very knowledgeable group of folks all of whom are on the AIH journey either as patients or carers (like myself)

You'll find the group at:- facebook.com/groups/AIHorgUK

All the best,

Katie

[192orchard in reply to AyrshireK]

Thanks. Yes I am aware of this group. I am querying whether I have been misdiagnosed. Maybe fooling myself. 😜

[AyrshireK in reply to 192orchard]

How did they diagnose you? Often AIH diagnosis involves a whole range of tests and a positive reaction from the steroids. Just because your fibroscan is good it doesn't mean you don't have AIH it just means they've caught it before it's done any damage.

[192orchard in reply to AyrshireK]

Yes, I might me in denial. It just seem to take forever to diagnose. Ultrsound, bloods etc. See my other comments. So to go from a diagnosis with one consultant of cirrhosis to another saying biopsy not clear and now normal liver. I will keep taking the medication until I speak to my consultant again. I was just interested to find out if anyone else had the same experience. Thanks for your help all.

[AyrshireK in reply to 192orchard]

MMM, puzzling on the previous mention of cirrhosis.

Was it ultrasound that showed that?

My hubbies biopsies also took too small a sample to establish the cause 100% though due to auto immune antibodies that's the diagnosis they reached in his case - he definitely has cirrhosis (ultrasound / biopsy & symptoms as proof) and they say his AIH has burned out because he has no ongoing inflammation even without treatment.

I can see why you'd want absolute clarification of your diagnosis.

Katie

[192orchard in reply to AyrshireK]

To be honest I don’t know how they diagnosed cirrhosis but I did have lots of bloods done, ultrasound and biopsy. Initially I went to my GP because I thought I had bladder infection. Then bloods were in the red zone and she wanted me seen as urgent with consultant at ED. Then it went on from there. Eventually said I had AIH. I guess I just responded well to the medication. I just don’t want to be on medication for life if I don’t need to be. I never felt unwell and my bloods are tested every month and they always come back normal. I guess I will just see if the consultant comes back to me now that he has the results. If not I will not wait another 6 months! I will call him. Thanks Marie

[Onesmallstep1969]

Katie has given you the link to the Facebook AIH group. Please join. Your Fibroscan is terrific. What was the score previously or is this your first Fibroscan?

[192orchard in reply to Onesmallstep1969]

Just a big strange I was told I had cirrhosis and this is my first Fibroscan. I was told that my liver could not mend itself but I could stop further inflammation/damage. My biopsy samples were too small. So I seems strange that it heals in such a short space of time. Great drugs or wrong diagnosis!

[CarpeDiem11 in reply to 192orchard]

It is possible to have a misleading result from the fibroscan I'm afraid. I have advanced cirrhosis, but my fibroscan says not (and I've had two years apart that gave a similar score). My liver is definitely NOT healed because I have other problems that tally with cirrhosis. Sorry if this is not the news that you wanted to hear, but just giving you another experience (and I have AIH).

[192orchard in reply to CarpeDiem11]

Thanks. I was, however, shown two other readings, which apparently show the accuracy of the fibroscan. I cannot remember what the were but the nurse said they were the indicator that the reading is accurate. I guess I will just have to wait and talk to my consultant. My problem is I never had any symptoms. Although I am sure I still have the diagnosis of AIH. Or have I been missed diagnosed. I was sent to this consultant for a second opinion. Or am I deluded 😜 Thanks

[CarpeDiem11 in reply to 192orchard]

The machine itself is accurate. However, if they take a reading from area 1 on the first fibroscan, it could be low. If they then take a reading from area 2 on another occasion, this could be a lot higher. They are both accurate, but tell a different story.

Why does this happen ( you might already know, so apologies if you do) Liver damage is not even across the liver. They don't know where they scanned the first time, so could scan a totally different area the next time. Area 1 might not have much damage, but area 2 does have more, which is why you get different numbers.

Unless they scanned the whole liver, they cannot say for sure, from a fibroscan alone, what level of scarring is present. Usually to diagnose AIH, they need lots of things to give the diagnosis. So bloods, auto- antibodies, ruling out other causes, before getting a biopsy. If all these things were what they expected, then a mis-diagnosis is less likely. However, you have said the biopsy samples were too small, so maybe another biopsy could clear things up.

Alternatively, you come off meds & a) you are fine or b) you relapse & your bloods go up. It's worth chatting through all these options with your doc, ( I'm not advising stopping drugs without discussion with doc first, just to be clear) as no- one wants to take horrible drugs if they don't have to. Wishing you well🙂

[192orchard in reply to CarpeDiem11]

Many thanks. I will never have another biopsy. Horrendous experience. He went in twice and yet not good enough samples! Anyway, I welcome all your comments. Far more knowledgeable then me. Regards.

[CarpeDiem11 in reply to 192orchard]

No problem. 😉