autoimmune hepatitis

[mrsvod]

i was told about three weeks ago that i have autoimmune hepatitis and told to take steriods budesonide 9mg a day thats all i know about it

[MisterX]

Hi,

Inflammation of the liver can be caused by a number of different causes, one of which is your own immune system, for whatever reason, turning on liver cells and destroying them. The inflammation is called hepatitis. There are also other causes of hepatitis including some viruses called Hepatitis viruses because they inflame your liver and give you hepatitis. Hepatitis just means inflammation.

If the liver remains inflammed for long enough or the inflammation is severe enough in a short time then the inflammed liver tissue turns into scar tissue. This scarring is called fibrosis. As more and more of the liver becomes inflammed and turns to scar tissue, the degree of fibrosis increases. Eventually if the entire liver has been comprehensively scarred over time then that level of fibrosis is called cirrhosis. Sometimes people use the word cirrhosis to refer to all scarring of the liver but in reality it should be used to describe the situation when the entire liver is scarred.

So in your mind do separate the inflammation of the liver, the hepatitis, from the amount of damage, fibrosis or cirrhosis.

The good news about the liver is that it is a remarkable organ. You can live perfectly well with up to about 80% of the liver out of action. The liver will repair itself and regenerate itself, so if you chop half of a healthy liver off it will regrow in a few weeks - seriously.

So medically speaking, if the cause if inflammation can be prevented or reduced to below the level of the liver's self-repair there are good prospects of the liver recovering or at least preventing further damage and living normally.

With AIH the treatment of choice is to tamp down the immune system to reduce the attack on the liver and hopefully allow recovery.

The good news for you is that Budesonide cannot be used if you have cirrhosis so that would indicate you have a level of fibrosis short of cirrhosis. AIH is something that has to be monitored lifelong but if it is caught before cirrhosis it can usually be successfully managed. Cirrhosis (after the earliest stages) is usually irreversible.

Other than that do not drink alcohol, you really can't spare the liver cells, eat healthily, and get some exercise. These are very important.

Hope that helps.

Best of luck.

[mrsvod in reply to MisterX]

i dont drink which is a good thing ty for your reply

[marianne22 in reply to mrsvod]

Hi mrsvod, I was also recently diagnosed with aih and am also taking 9 mg budesonide daily. After 7 days all my liver readings went down and I'm hoping that they are close to normal in my next blood test. I am also taking 50 mg imuren daily so that I can eventually stop taking steroids and the imuren will take over.

MisterX has given a lot of information, I do think you get better information here than from the doctors. I used to have wine with my meals and I do miss that but I'm going to try non-alcoholic wine. I live in Spain and there's quite a good selection here.

I hope you don't mind me asking but how did you get diagnosed with aih, did you have any symptoms? I didn't have any, I was diagnosed when I had my gallbladder removed and everything was very inflamed, including liver, so the surgeon took a biopsy and the result was aih! Still can't believe it but apparently biopsies are very reliable.

[mrsvod in reply to marianne22]

Hi I had pain in my side didn't think much of it then had a blood test for something else and was told my alt readings where in the thousands so I had a biopsy done I've only been on budesonide for 3weeks but my readings are slowly coming down think they might add another tablet in later not sure

[AyrshireK]

Hello mrsvod, sorry to hear of your diagnosis though thankfully they have obviously caught it early enough for docs to start a treatment and control plan. My husband sadly never even knew he had AIH until it was too late and he already had chronic advanced cirrhosis before he even found out he was poorly - his is said to be 'burned out', did its damage then went dormant which is seemingly an unusual presentation of AIH.

Anyway, my point in writing was to say there is also a specific AIH support group in the UK, run by AIH patients and having good backing from expert specialists in Birmingham. They have their own forum at :- supportaih.websitetoolbox.com/ and also a Facebook page which is very, very active and great for discussions and support and even just for venting of stresses. It is at :- facebook.com/groups/AIHorgUK/ A great many of the members are also on here but are more active on the Facebook group.

Hopefully between us all we can offer support and advice as you need it.

All the best, Katie x

[mrsvod in reply to AyrshireK]

Ty il have a look

[Becca75]

Hi - i was diagnosed with Autoimmune Hepatitis a month ago. I go see my specialist Thursday. I was put on 20 mg/day of Prednisone immediately. I also have PBC (diagnosed in april of this year). I'm hoping my dr will decrease the dose of these steroids but they have thrown me and my body for a loop - although they're doing exactly what they're supposed to - my numbers are coming down in that area and i'm responding really well. What scares me is that AH involves the whole liver - and it has the same end as PBC but will get me there a lot faster unfortunately.

I really hope the sterroids help you!