Autoimmune hepatitis 19 year old

[MicheleG33]

Hello to everyone, I'm new here and we got my sons diagnosis yesterday after 5 months of him being unwell and a blood test showing extremely high liver enzyme levels. I wonder if there is anyone ( maybe even of a similar age) with the same condition as I'd really like him to talk to others and I would really appreciate the support and advice.

[chrisw740]

Hi Michele

Sorry to hear about your son's diagnosis. There are good number of people on here that are managing their disease well and indeed successfully living with it. Searching the site for AIH should bring up some inspiring stories.

Just in case you didn't know about the Child Liver Disease Foundation I've included a link below... they support young people up to age 24 so your son may be more likely to connect with his peers there.

childliverdisease.org/

healthunlocked.com/cldf

Very Best

Chris

[MicheleG33 in reply to chrisw740]

Thank you Chris. That's good to hear and I'll pass on the link to him. Much appreciated. First follow up appt next friday since diagnosis and we gave quite a few questions building up. Hospital Hep staff have been amazing

[MisterX]

Hi Michele,

Sorry to hear the news. AIH can strike at any age but does tend to predominate in younger people. The good news is that it's usually a very manageable condition.

If the diagnosis is confirmed what the doctors will do is to move to immunosuppression to tamp down the hepatitis (the word hepatitis means inflammation of the liver - from any cause). In the first instance this is often steroids which are then replaced over time by other immunosuppressive drugs. I was diagnosed with AIH nine years ago and was initially on Prednisolone (Prednisone in the USA) which was then tapered down, augmented and eventually replaced by Azathioprine - but he may be prescribed a different regimen depending on his exact circumstances.

That's the AIH side. The other side of the coin is the level of fibrosis already caused by the AI hepatitis. The liver is a remarkable organ. It's huge - a person can function perfectly normally with only 20% liver capacity and it is the only organ that has the capacity to regenerate. If inflammation is short term the liver cells recover. If it is chronic then the cells turn to scar tissue. Fibrosis simply means scarring of the liver - from whatever cause.

Fibrosis is measured according to a number of scales. The most commonly used have 4 or 6/7 stages of fibrosis which denote how much of the liver comprises scar tissue. If the cause of inflammation is removed most fibrosis heals over time and the liver recovers. It can also be measured by Fibroscan which uses ultrasound to check liver stiffness (and therefore the amount of scarring).

The final stage of fibrosis - stage 4/4 or 6/6 etc. is when the entire liver comprises scar tissue. This is called cirrhosis. Cirrhosis simply means that the entire liver comprises scar tissue. It uses to be thought that cirrhosis was irreversible but it is now known that early cirrhosis can revert back to normal liver tissue of the cause of the inflammation (known as the insult - in this case the immune response) is removed. Later established cirrhosis is generally not thought to be reversible because the scar tissue is replaced by scar tissue but lots of work is going on to develop therapies to change this. It's important to understand the diasctintion between fibrosis and cirrhosis. Cirrhosis is the final stage(s really because there is early and later cirrhosis) of fibrosis and represents a measure of scarring. Many people - including many clinicians use the words fibrosis and cirrhosis interchangeably and will refer to "a bit of cirrhosis" when they mean fibrosis or use cirrhosis to refer to the process of forming scar tissue rather than the level. I hope that makes sense - it's important you understand it.

So your next step will be to determine the level of fibrosis. If it helps I was diagnosed with AIH and established cirrhosis 9 years ago and have been trundling along on immunosuppressive therapy quite happily since then.

Hopefully your son's fibrosis is at a level less than cirrhosis and his liver will recover fully - but that is the next question for you to ask.

AIH is very treatable. What he has to do now is the same regardless of the level of fibrosis. No drinking (at least until he's discussed with his docs), eat healthily, and stay fit and avoid putting on weight. In short adopt a healthy lifestyle NOW and keep it up for the sake of his liver. He can live a perfectly normal life but he will have to manage this for the rest of his life so he should get into good habits now.

Hope that helps. Do post back when you know more.

Will keep fingers crossed. Very best wishes.

[MicheleG33 in reply to MisterX]

Thank you so much for this reply. Yoube explained so simply and thoroughly. I'm going to ask my son to read this.The latest is that he has another CT scan tomorrow. I think now diagnosed they are looking at the condition of his liver. His spleen was enlarged also.

He also has an EEG booked to check for HE though I'm assured this is just a precaution and not suspected.

Hes on his 2nd week of Pred.

Still pain in back, side and generally joints etc.

I'm now T total with him though neither of us drank really and he barely had time to try alcohol as he was 18 in lock down.

We are getting to grips with his diet. He was already very limited on what he would eat and so finding a new diet is going to be a challenge. But hes being very proactive and looking things up.

Thank you for your support and reassurance. I'll keep you updated.

And I'm very pleased you are doing so well :o)

[MisterX in reply to MicheleG33]

Happy to help.

It's going to be an "exciting" and detailed ride for a while. The aim will be to use the steroid - Pred - to get the hepatitis under control. As he'll probably have started on a pretty large dose which will taper it's going to be quite intense for him. Pred has a huge effect on mood (and everything else) so he might be up and down for a bit especially since at the same time he'll be dealing with intense attention to all sorts of measures, tests and bits of his anatomy - like the spleen - that he'd previously not given much thought to.

So it will be a VERY intense few months as it will take a while for the Prednisone/Prednisolone to get his blood levels back to normal - it actually took a couple of years for me - for both of you but things will generally settle down and it's important to take a measured view - ie not get overwhelmed by every blip or variation.

Best of luck.

Oh PS - One thing to beware of is that Prednisolone/Prednisone will spike blood sugar so it's very important he doesn't go overboard on foods that will make that worse - however tempting. He should keep an eye on his weight during this time. Doesn't mean complete abstinence but to be measured.

[MicheleG33 in reply to MisterX]

Once again I thank you. Hes on 30mg pred. Omep and Vit D. Going to be starting immunesupp soon.CT scan today I assume to check liver since diag.

EEG booked just to be sure on HE too.

His face to face was cancelled last week for asking questions since getting quick video call with diag. So hopefully we get that chance this week some time.

Think hes now on weekly bloods rather than twice weekly 🤞

Have a good evening 😊