Has anyone been diagnosed with AIH wrongly?

[Jess246]

My 20 year old son has been having blood tests for over a year (due to the pandemic all follow up appointments were cancelled) I’ve been chasing the hospital constantly to give a diagnosis but each time they’ve said do more tests. Finally last week a consultant told him he’s possibly got AIH. This has shocked all of us especially when the first thing I saw when I googled it was a possibility of dying. He doesn’t have any symptoms at all and it’s not in the family on either side. Could they be wrong? He loves to party and have a good time and I think the thought of not being able to drink is hard. He doesn’t drink often, only weekends if he’s out. We’re now waiting on the results of the last lot of blood tests where they’re testing everything. They took 8 vials this time. The consultant has said he’s going to start him on 30mg of the drug beginning with P? Can’t think of the name at the moment 😐. Any advice or information would be appreciated. Also should my 22 year old daughter be checked?

[AyrshireK]

There are numerous tests required to confirm a diagnosis of auto immune hepatitis - bloods, antibody markers, normally a liver biopsy and a positive response to steroids (Prednisolone being the 'go to' first line treatment to bring down the levels of inflammation). Even if he isn't symptomatic I am guessing his liver inflammation markers are going haywire just now hence the high level dose of steroids.

This isn't lifestyle related nor hereditory so unlikely to affect your daughter & although it's a lifelong condition it is also very treatable.

AIH is a defect of the immune system, they say someone has some sort predisposition to auto immune conditions then a trigger of some sort sends it hay wire so it starts to identify parts of your own body as alien and attacks them. In the case of AIH it's the liver that it misidentifies and attacks it.

Treatment is usually steroids first and as the inflammation comes under control they introduce an immune suppressant to tamp down the over active immune system preventing it from 'flaring' and causing actual damage to the liver.

My husband sadly presented with cirrhosis in 2012 and he has never been symptomatic of AIH but his was attacking his liver silently (possibly for years) and it only came to light when it had caused severe liver damage.

Whilst being young and having AIH has it's issues it isn't impossible to live with and isn't likely to cause death at all - the AIH is treatable, if it does go on to cause severe liver damage then transplant is always an option.

Sadly covid has obviously delayed issues with your sons diagnosis but what they will look for is a positive response to the steroids and that might help confirm the diagnosis. AIH is much more prevalent in females than males - another auto immune conditions called Primary Sclerosing Cholangitis (PSC) is more common so they'll need to work out which condition he actually has.

He'd be wise not to take any alcohol at all during the diagnosis phase at they won't know whether bloods are elevated due to drink or the AIH. Many AIH patients are told they are allowed to drink (in moderation) once their condition is stable but that would be up to your son's doctors to advise.

The British Liver Trust has an excellent page on the condition which isn't as doomy and gloomy as some information you may have read on other sites and there is also a fabulous AIH support group on Facebook with about 3000 members all of whom either have AIH themselves or like me are supporting a loved one with the condition. Group is private so no one else on your friends list see what is discussed there and it is supported by some of the top doctors in the UK who are working in the field of AIH treatment and research and they even have regular conference type gatherings where these doctors appear for presentations and Q&A's. Well worth joining.

Loads of folks on there have had diagnosis from being young including some who have it as children.

britishlivertrust.org.uk/in...

facebook.com/groups/2293328...

Katie

[Jess246 in reply to AyrshireK]

Thank you so much for your reply. He has joined the Facebook page and so have I. We'll wait to see what the blood tests come back with. It’s just a real shock.

[AyrshireK in reply to Jess246]

At least if they've caught it before it's done damage then it's treatable. Like I say, my hubby has cirrhosis due to AIH and he didn't know about it till right out of the blue he started vomiting blood due to end stage cirrhosis symptoms - he's stable again now and just living his life to the full despite his condition.

Katie

[Jess246 in reply to AyrshireK]

Thanks again. Sorry your husband is going through it. It’s such a strange illness that gives no symptoms until damage is done. Sending best wishes

[Em66]

My son was 20 when diagnosed no symptoms at all until he turned yellow one weekend. It had been going on for many years and blood tests followed by a biopsy confirmed AIH with cirrhosis. It was such a shock .It's a year later and still has no symptoms and the care he's received has been second to none . He started on prednisolone to calm the inflammation before other drugs were added. He is managing very well but fortunately for him has never drunk alcohol. It is a rare disease and even rarer in males.

The Facebook group for AIH Britain and Ireland is another very knowledgeable and supportive group.

Wishing you and your son all the best.

[Jess246 in reply to Em66]

Thank you for your reply. That must have been a shock for your son. Glad he’s now doing well

[Hidden]

Hello, welcome to the forum although I am sorry about the cirumstances. Hopefully your son is under the care of a liver specialist (hepatologist) at a liver centre ? Accurate diagnosis and appropriate management and follow up are essential.

Here are the links to a couple of our publications - the Patient Charter - what to expect if you have a diagnosis of liver disease and liver disease tests explained.

I am also including a link to all the liver units in the UK.

britishlivertrust.org.uk/li...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

We do have a free telephone helpline service if you would like to speak to one of our liver specialist nurses. It is open MOn- Fri (not bank holidays) 10:00 - 15:00 0800 652 7330

regards