New diagnosis of autoimmune hepatitis

[Ruby21]

My daughter has been diagnosed with autoimmune hepatitis and I feel that we have been given no advice from the medical team just given a load of blood forms and to come back in two weeks as the doctor had a meeting to go to I’m at breaking point any advice would be greatly received.

[Kristian]

I know its a bit frustrating, but, actually what giving you those two weeks can now do is give you time to think about any questions you may want to ask when you go back. I know from my experience, when I was given results etc it was always difficult to thing on the spot of any questions I may want to ask. By the time my next appointment came round i'd forgotten what those questions where. So even though not ideal in one respect, it may be a bit of a blessing. Give yourself time to have a good read up and then pound the doc with all your questions net time you go, lol.

[Ruby21 in reply to Kristian]

Thank you I was so upset with them as they said the had a meeting to attend to and they will meet with her in Two weeks the poor girl is 17 and googling and now she is frightened but thank for your advice I will write a ton of questions for our next appointment

[AyrshireK]

If you do Facebook at all there is a fantastic support group for Auto Immune Hepatitis. It has nearly 2000 members from around the globe all at different stages in their AIH journey. They are really supportive. The page itself is run by AIH patients and members include patients plus loved ones of patients (like myself). The group is supported by some of the top boffins working in the field of AIH, AIH research and treatment and they have annual gatherings at top British hospitals with these top doctors/professors giving presentations plus they have groups who set themselves up for more social gatherings for mutual support.

Page is at:- facebook.com/groups/AIHorgU... (it's a closed group so you have to apply for admission and no one else can see what you post, it isn't broadcast across your Facebook profile etc.)

They are best placed to answer questions, has your daughter had a biopsy and all the other tests to confirm AIH and is it currently active? Is her ALT (inflammation marker) way high? Next step would normally be the commencement of medication such as a steroid to get the inflammation under control and then gradually reduce the steroid but replace it with an immune supressant medication.

Key questions will be (a) is there any liver damage at present? (b) how active is the inflammation? (c) treatment plan going forward.

Best wishes, Katie

p.s. sadly my hubby never got any warning or early indication of liver ill health and his AIH caused cirrhosis before it was ever identified after he presented with advanced end stage liver disease symptoms. That was in 2012 and he's still doing ok in the grand scheme of things.

[AyrshireK]

Further to that the British Liver Trust has a page all about AIH at:- britishlivertrust.org.uk/li... so you can learn more about the condition and go forearmed into your next appointment.

Katie

[Hidden]

If you go to the search bar and type in AIH or autoimmune hepatitis, then there will be a lot of posts relating to the condition. Also as Katie has said, you could join the Facebook page as even if yo don't want to comment, you can read the files from meetings which will explain a lot about the condition. Other than that, you could ask us questions (I have had AIH for approx 9 years) and we will try to help as much as we can

[Hidden]

Hi Ruby21

Welcome to the forum where you will find lots of excellent support, as you have already found out from the replies to this thread.

We have some excellent information on Autoimmune Hepatitis on our website, here is the link;

britishlivertrust.org.uk/li...

Is your daughter under the care of a liver specialist? Hopefully they can give her the guidance and support she needs.

Best wishes

Trust1

[MisterX]

Hi Ruby,

It's bound to be a shock. Hopefully the following will help - apologies if it's a bit basic....

AIH is rare overall. Between the ages of around 10-40 it tends to affect girls and women more, after 40 men and women equally.

As I'm sure you know for some reason unknown your daughter's body has decided to treat her liver as a foreign object and the immune system is attacking it.

The good news is that AIH is eminently treatable. The standard treatment is immunosuppression to keep the immune system in check. This relies on the fact that there are two things in our favour - firstly the liver is huge and has a huge capacity. We can live perfectly normally with less than 20% of our livers intact. The second is that the liver regenerates damaged tissue - to the extent that it will grow back a piece if chopped off.

It's a bit like baling out a boat with a hole. As long as the ability to bale out water exceeds the amount coming in - or even reduces the amount coming in long enough for the boat to do what it needs - then all is well. In this case the immunosuppression should tamp down the immune system enough for the liver to repair and regenerate or for healthy liver tissue to continue to do its's job.

The reason for the delay will be for the doctors to assess how extensive any damage is - most liver damage below full cirrhosis is reversible - and even the early stages of cirrhosis can reverse themselves too. They will also want to see how active the disease is - sometimes AIH "burns itself out".

If it's any consolation I was diagnosed with AIH 5 years ago and doing pretty well. It's very manageable.

Hope that helps a bit. If you have any more details or questions do post them - there are many helpful people here who know exactly what you are going through.

[MisterX in reply to MisterX]

PS - Some terms to be aware of: The word "hepatitis" just means inflammation. Some viruses/bacteria which cause hepatitis are unhelpfully named Hepatitis because they cause.... hepatitis - inflammation of the liver.

"Fibrosis" refers to scarring of the liver. Fibrosis happens when the liver is inflamed for a long period. There are stages of fibrosis. The final stage of fibrosis - when virtually the entire liver is scar tissue is called "cirrhosis" - Cirrhosis means an entirely scarred liver. A warning - some people refer to "fibrosis" as "cirrhosis" - ie the process of scarring. It's NOT. Cirrhosis is the final stage of fibrosis.

[MisterX in reply to MisterX]

PPS - Only good advice at this stage would be to stop drinking and eat healthily. She shouldn't take any supplements - including vitamins etc without discussion with her doctor. One the doctors have all the information they can advise whether she can resume drinking. They'll never tell her not to eat healthily sadly 😀

[Ruby21]

Hi and thanks for the advice luckily she hates alcohol and doesn’t drink she has just turned 17 and has been struggling with health issues over the last year when she was firstly diagnosed with celiac disease followed a week later arthritis she was started on methotrexate which pushed her AST and ALT up through the roof she is sensitive to the steroids and has now been started on Azathioprine just been a massive shock but thanks for your advice

[AyrshireK in reply to Ruby21]

Yourself and your daughter might want to touch base with the Childrens Liver Disease Foundation. I know your daughter won't see herself as a child at 17 years old but the CLDF support parents and young people up to the age of 24. You can reach them at:- childliverdisease.org/ Advice might be very relevant going forward and for your daughter who might get advice/support from other young patients.

Wishing you both all the very best, Katie