I just wondered if anyone out there also has liver fibrosis?
I was diagnosed with AIH just over a year ago.
When my liver biopsy was done, it took about 6 weeks to get my results and when they came back they told me I have stage 5 liver damage, which is fibrosis and means I have scarring on my liver.
I was relieved it wasn't cirrhosis and it thought this meant my liver has a chance to repair itself.
At my last consultation however, I asked my consultant if he expects my liver damage to improve and he said unfortunately it's very unlikely, because scarring is usually permanent.
I'm a little confused, because I though livers could regenerate if you didn't have cirrhosis, but now it sounds like they can't repair themselves if you have fibrosis either?
If there is anyone out there who has fibrosis as well, it would be great to hear from you and find out if the liver damage could improve, stays the same or gets worse?
My next biopsy is in March next year and I feel so scared that it could get worse, I feel like I have no hope of my liver improving from what my consultant said and I'm even worrying it could deteriorate into cirrhosis?
Written by
Sah27
To view profiles and participate in discussions please or .
Hi Sah and sorry to hear of your confusion. It's quite common! Am assuming you are in the UK and your biopsy score was done with the Ishak system which goes from 0 = no damage, to 6 = cirrhosis. 5 as you say is quite a bit of damage but not yet cirrhosis and its commonly thought to be cirrhosis that is irreversible. Fibrosis as I understand it is more a stiffness of the liver rather than permanent scarring, but as it progresses it 'bridges' or crosses over into more and more areas of the liver, hence the term 'bridging fibrosis'.
I was diagnosed with cirrhosis about 5 years ago, due to a long time living with hepatitis B. Investigations revealed liver cancer also, so I had surgery to remove the tumour and the biopsy of tissue staged me at Stage 6 cirrhosis. A couple of years later when my symptoms hadn't resolved, I was tested for AIH and this included another biopsy to make sure of the diagnosis. This time my score from the sample they took was Stage 1 - well how about that!! Its possible that the first biopsy scored high due to the tissue being compromised by the cancer, and that the second scored low due to my then being on medication to control the viral hepatitis. Whatever the reason, different parts of the liver can be at different stages of damage.
As I'm sure you have been told, AIH is normally treated as a lifelong condition (unless in some cases it has been caused by a medication which is then removed and the condition resolves itself). Are you now on medication? If so, this will firstly damp down the inflammation and damage to your liver, and then if an immunosuppressant is taken will stop your immune system damaging your liver further. So in answer to your worry that you will progress to cirrhosis, that should not happen if you are now on treatment.
As a stage 5, I would say that things can improve - though I am not medically qualified to say that! However it takes not just swallowing your tablet to help your liver but a thorough review of your lifestyle and giving your liver lots of TLC. So thats no alcohol (unless your blood tests are all within normal range and then only an occasional drink), eating healthily, probably cutting out or down on sugar and saturated fats. Pacing yourself to deal with the fatigue etc.
Do you know why you are scheduled for a second biopsy within a few years of the first? Normally if you are responding to treatment there should be no need for another biopsy.
No I'm not sure why but my consultant said unfortunately I need another at two years, I think to check liver damage and then after the biopsy he said I have to come off the prednisolone and go on alternative medication, I'm on azathiaprine too.
Thanks for the information, I am in th UK and have a gastroenterologist. No one has said anything specific about what to eat, just to 'eat healthy'!
Second biopsy isn't all that uncommon in this situation...
(apologies if repeating anything you already know..)
What they're trying to do with the drugs is to tamp down your immune response to minimise the inflammation of the liver. Inflammation is called hepatitis (not to be confused with viruses called hepatitis - - because they give you hepatitis!!!). Prednisolone is effective at reducing inflammation, but it's a cortico-steroid and has its own effects so ideally the system is to get the inflammation (hepatitis) under control and then reduce the prednisolone to the lowest possible dose. Azathioprine is typically added to assist this process and take up some of the slack from reducing the prednisolone as it has fewer side effects..... ideally you come off the prednisolone completely...
The hepatitis is measured using blood enzymes. As levels of these enzymes come down into the normal range it is a reasonable assumption that this is reflecting reduced inflammation in the liver. If you achieve normal liver function tests this is referred to as biochemical remission - i.e. chemistry is normalised......
.....but........ histological remission - ie reduction in inflammation as seen by a biopsy sample - can lag behind biochemical remission for two years, so it's reasonable to take another look then to be sure that the remission shown in blood results is reflected in the tissue itself....
.....and...... because the liver has regenerative ability to see if the reduction of hepatitis has given the liver the chance to reduce some of the scarring (fibrosis).....
So second biopsy perfectly normal and reasonable thing to do.
Do post blood results and amounts of meds you're taking if you can.
Also - in case you are not already on this - get checked for steroid induced diabetes. One of the things cortico steroids do is to raise your blood sugar. If you take a fasting blood test in the morning it may well be normal but it will be rising most of the day after you take the steroid and therefore causing damage - in which case you have to consult with your doctor and be a bit more careful with quantities of carbs. It doesn't happen to everyone but you should definitely check for it. Sometimes doctors do a fasting blood test and declare everything ok without realising that you're spending 16 hours a day with high blood glucose..
Do keep asking questions as they occur to you. This is not the time to be shy..
Best regards.
PS - FYI if the drugs can keep the hepatitis at bay a person can live pretty normally even with only 10-20% of liver capacity remaining. It's pretty amazing..
Fibrosis is scarring - and the severity and extent of the scarring is denoted by the score on the test (there are a few ways it's graded. Cirrhosis means that the scarring has got to the point where it encompasses the entire liver and because of that the structure of the liver has changed - islands of normal cells stuck within fibrous bands - but it's all a continuum of fibrosis.
It used to be considered that cirrhosis was irreversible but that understanding is changing as more is understood about liver problems and doctors are now coming to the conclusion that there are stages within cirrhosis and that even cirrhotic livers stand a chance of improvement if the original cause of the inflammation can be stopped - in the case of AIH (I'm with you) using immunosuppressive drugs. The key seems to be to get the blood chemistry as close to normal as possible as quickly as possible and then maintaining it and staying well compensated - i.e. your liver continues to do what needs to be done without complications.
It's a very complicated condition so generally you'll get the best understanding from a hepatologist or gastroenterologist who specialises in liver issues.
At stage 5 you're not in full on cirrhosis. The key is to get the meds so you get to normal blood chemistry (i.e. normal liver enzymes and liver function tests - or as close to as possible) and from a personal perspective to make sure you provide the conditions for you liver to heal - i.e. stop drinking, improve your diet..... and do it yesterday...
If you have a chance post your meds and blood results here and others with AIH can perhaps comment if they follow their expectations or if you need to go back and ask your doctors for something different or a further explanation. At stage 5 though with the right meds and you doing the right thing you have a great opportunity to improve things..
Everything MisterX said! Especially posting your blood results would be interesting. As MisterX says the aim with the treatment is to get your liver inflammation under control with the presnisolone (steroids) and then prevent further damage to your liver by longterm treatment with the Aza or similar drug. I'd be interested to know whether your liver function results are within normal range, and if they are, whether they have been for some time. If you read posts on the AIH forum and FB page you will see that most hepatologists take their patients off the steroids when their liver function tests become normal. This is because of the side effects of the steroids. Normally Aza or similar has been introduced by now. If the patient stays 'normal' during a slow reduction of the steroids, then they are usually taken completely off them and maintain on Aza or similar alone. I'm curious as to why you are still on prednisolone after such a long time, but it may be because your liver is still inflamed and your ALT is still elevated?
I was on Pred for 6 months max and now maintain on 50mg of Aza. I also wonder why your doctor says you must change to a different medication after the biopsy? Sounds like they are pre-empting the result of the biopsy before its been done! If you are doing well on Aza, why switch?
Hi Bolly, I'm getting a bit worried now, I don't really know.
I am on 5mg prednisolone a day and 100mg azathioprine.
When I got diagnosed my liver was inflamed but I don't know if it is now.
My bloods went back to normal last July but they said they will take me off prednisolone completely at two years which will be March. And this is when they are doing my 2nd biopsy.
I started on 40mg prednisolone so the dosage has come down a lot.
There are guidelines for the treatment of AIH which suggest that the prednisolone can be withdrawn when the patient achieves 'remission'. Whatever that is! I guess for some doctors remission is when the liver enzymes have been normal for some time, like yours have. Or some doctors might play safe and prefer to check the liver histology by biopsy first, which sounds like your gastroenterologists way. Aza dosage is normally based on weight. I'm around 9st and I'm on 50mg with normal liver enzymes. Its not really recommended to stay on steroids for longer than 6 months unless your liver enzymes are out of range, due to the many side effects. But I'm not a doctor and dont know the individual circumstances of your case. Steroids side effects include not just weight gain (boy do we get the munchies!) but redistribution of body fat, a double whammy.
Many liver specialists now use Fibroscans to chart the liver health, as biopsy is known to be slightly risky. It sounds as though your doctor is being cautious with the treatment plan, but March next year seems a long time to wait before your docs consider taking you off pred, and you have already had normal results for nearly a year? Your consultant sounds a little pessimistic, any chance of a re-referral by your GP to someone more upbeat!
hi I don't have this condition but I suspect I have some kind of fibrosis-my GGT has been elevated for some time-originally almost certainly caused by excess alcohol over the years although much moderated recently. Had a fibroscan test of 7.6 at the liver trust road show last year. Not guaranteed fibrosis but I suspect that figures gone north of late. Been getting some worrying symptoms of fatigue. Blood tests soon so will see what's what? Found some interesting posts/responses from the usual suspects-this is a very good forum. Good luck with your prognosis.
Hello. I have just recently had a Fibroscan 2 weeks ago and told I have Fibrosis and it is 10.
I am waiting for an appointment to see the Liver Specialist that I was referred to in January, by my Dermatologist who treats me with Biological Drugs to keep my skin problem under control. For the last 10 years my LFT blood tests have gone up and down and a few months back they went really high. I am told a change in lifestyle is best for Fibrosis as there is no other treatments.
I am a Vegetarian Diabetic, don't drink Alcohol my Cholesterol is 3.2. Don't know what else I can change in my lifestyle/diet.
Hi my name is Roger and I just found out that I have liver a disease fibrosis
Hi
I have Nash with some fibrosis, diagnosed in January. I seem to be feeling worse not better, I see my consultant on the 3rd august so I hope he can help. Hope you feel better very soon. Please take care. Lots of love Lynne xxxx
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Cases of cryptogenic liver fibrosis
Can LFT tests me normal with fibrosis of the liver?
Prediabetic and liver fibrosis
Advanced liver fibrosis 
Fibrosis Fatty liver?
