Fibrosis stage 3: So today I got a list... - British Liver Trust

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Fibrosis stage 3

Petart44 profile image
Petart44

So today I got a list of my illnesses from the doc`s for my PIP claim and noticed that my auto-immune hepatitis which is causing my liver disease has been put down as Fibrosis Stage 3. Does anyone else have this and how are you managing with it?

Thank you for reading

17 Replies

Your AIH is likely to cause you more issues than the F3 fibrosis although if this progresses to F4 i.e. cirrhosis then it's likely to bring more symptoms and issues with it.

Are you under treatment for your AIH now? Hopefully medication can slow it's progression and perhaps even lead to some improvement. Until it becomes F4 / Cirrhosis there is still some chance of the liver healing if the 'attack' is halted.

My hubby has cirrhosis due to AIH although his AIH is deemed burned out - it did it's damage before it showed any symptoms and by the time he became symptomatic the symptoms were those of decompensated cirrhosis rather than anything to do with AIH.

All the best with your PIP claim, hubby had to battle all the way to appeal tribunal for his first application though was successful in getting an award then for Enhanced Daily Living. He is now in receipt of Basic Rate Mobility and Enhanced Daily Living.

Katie

Petart44 profile image
Petart44 in reply to AyrshireK

Thankyou for that information. This has been going on since June 2018 but only been diagnosed with it April this year after a liver biopsy in March so seeing the Fibrosis on my list has thrown me a bit. Still waiting to speak to my consultant 11th June so hopefully he can elaborate more 🙂

AyrshireK profile image
AyrshireK in reply to Petart44

So are you currently on medication for the Auto Immune Hepatitis or has that still to be started?

They need to get any ongoing inflammation under control or the AIH will carry on attacking your liver and then longer term need to tamp down your immune system to prevent further 'flares'.

I am not sure how much you know about AIH at present but the BLT have a good page all about the condition at:- britishlivertrust.org.uk/in...

If you do Facebook at all, there is a superb UK based (but with worldwide membership) AIH support group. Over 3000 members all of whom either have AIH or like me are supporting a loved one with the condition. Admin are all AIH patients who have had the condition for years and the group is supported by some of the top doctors in the UK who are working in the field of AIH treatment and research. You'll find really good support and further advice on there and as it's a private group no one else on your feed sees what you post or discuss there. You'll get a warm and knowledgeable welcome. facebook.com/groups/2293328...

If you haven't yet completed your 'How does you disability affect you form' for your PIP application I strongly suggest you take up membership of the Benefits and Work website. The member only guides take you step by step through the process, helping you fill in the form in such as way as to 'prove' your difficulties. I've used it 3 times now for hubbies reapplications and also his Employment and support allowance and other than the first PIP renewal all the rest have been decided on paper without a face to face purely because of the detail I was able to include in the answers. benefitsandwork.co.uk/

Katie

Sorry yes, I am on Prednisolone and Adcal-D3 at the moment and will be going onto something else once the Prednisolone finishes in a couple of weeks but not sure what. I have filled the form out already detailing what I am going through with my illnesses, also have Sacroiliitis and suspected Spondyloarthropathy, Type 2 Diabetes, Anxiety, Depression and migraines all of which has been put on the form and is detailed in my list from doc`s. Just need to wait for Rheumatology to sort an appointment for me so I can send that letter off aswell to PIP.

I know how it works with PIP as used to work for HMRC so I know they can be a pain to start with. Will definitely have a look at the sites you have advised me about, thank you.

Heather.

AyrshireK profile image
AyrshireK in reply to Petart44

You'll be starting an immune suppressant as your prednisolone is reduced. Pred brings down your initial inflammation levels (like a fire extinguisher putting out a fire) an immune suppressant then gets introduced and that's the long term medication which keeps your immune system from being too over active (it's like a sprinkler which keeps the fire tamped down and hopefully prevents it from flaring up again). The 'go to' one is usually azathioprine though some people don't get on too good with it and there are alternatives.

Your Adcal D3 is to help prevent bone degredation due to prednisolone's calcium stripping side effect. You should perhaps have also been prescribed a PPI (Omeprazole or similar) to protect your stomach lining too because pred can be harse there.

Best wishes with your application, yes DWP were not helpful in hubbies case at all - he had his first face to face medical the week before he was formally put on the liver transplant list, he was dreadfully poorly yet scored zero points at face to face assessment and assessors report was a pack of lies from start to finish - thankfully with the help of local welfare rights officer and the very fair tribunal panel he appear at he got his enhanced daily living but it's stress someone so poorly and as a couple dealing with so much we could have done without.

Hope yours goes more smoothly.

All the best, Katie

Trust9 profile image
Trust9Administrator in reply to AyrshireK

Thanks for the response Katie - I love the fire extinguisher analogy - I think I may pinch that for future use if I may ?!

Trust9

AyrshireK profile image
AyrshireK in reply to Trust9

Quite a commonly used description of how the different meds work in AIH - simple to understand so yep keep it in your armoury. :)

Petart44 profile image
Petart44 in reply to AyrshireK

Thank you Katie. Hopefully it gets sorted out soon and goes through smoothly, your advice has been very helpful and appreciated

SteelOwl profile image
SteelOwl in reply to AyrshireK

Hi Katie, i take Adcal D3 because i was diagnosed with Low Bone Density for someone my age and i take Omeprazole for Gastritis. I've got Cirrhosis which was decompensated but after over four years of abstinence it has currently returned to compensated. I went for a transplant assessment almost two and a half years ago, but because i was still continuing improving i was told that i wouldn't need to go on the waiting list, well at least just yet anyway... Its just a case of continuing doing what i've been doing and being closely monitored by my Consultants and Specialist nurses. Best wishes, Michael.

MisterX profile image
MisterX in reply to Petart44

Hello Heather,

I was writing a reply and then got pulled away. In the meantime Katie gave you some sterling advice.

I'll just add that the Fibrosis indicates the amount of scarring of the liver. Depending on the scale they're using to assess it could be 3/4 or 3/6 or 7. The final stage is considered to be "cirrhosis" and the good news for you is that you're not there yet.

The liver has a remarkable ability to regenerate - it's the only internal organ that can. As a result once whatever is causing inflammation (hepatitis) of the liver is stopped then the liver is able to recover. Studies have shown that scarring/fibrosis including early cirrhosis can reverse. Once cirrhosis is firmly established it is less likely to reverse.

The good news for you is that you've caught the AIH before the scarring is at the level of cirrhosis and a good immunosuppressive regime should be an effective treatment.

I was diagnosed with AIH and established Cirrhosis - Stage 4/4 Fibrosis about 8 years ago. I went from Prednisolone to Azathioprine and have been chugging along since. AIH is very treatable and very manageable but it's worth learning how the liver works and changing any bad habits sooner rather than later.

Best of luck.

Petart44 profile image
Petart44 in reply to MisterX

Thank you MisterX, that has given me more clarity in my condition as well as the information from Katie. Very appreciative of the advice given

Hi Petart44I am new to this site ,( joined today actually) and I was recently told that I had stage 3 Fibrosis which came as welcome news to me as my diagnosis, after a biopsy and when I was hospitalized in December last for 6 weeks, was confirmed as AIH with extensive cirrhosis and end stage 4 liver failure. How I went from end stage 4 liver failure to fibrosis stage 3, I have no idea but I am so happy that 6 months down the line , Im still standing. I was put on 40 mg. of prednisone initially, then after 4 months on this drug (the side effects almost killed me) it was tapered down to 10 mg, as my blood levels went gradually down .The goal is to get to a maintenance dose of 7.5 for life I am told. I am not taking any other immuno suppressants just Pred.

How am I managing with it? . So far , since the Pred has been reduced, all the horrible symptoms/side effects have reduced and I am starting to feel half normal again . I am still not very active as I get very weak and tired and my tummy is sore from time to time and that prevents me from walking around too much so I have not gone back to work (I used to work as a social care worker in the community). My diet has improved which is a big help in building up strength (nothing special as I eat what I fancy) and I am starting to come back to myself gradually. I have found that anxiety plays a big part in coping day to day with the different symptoms that can pop up as no two days are the same for me. That is why I have reached out to sites like this as there is absolutely no support in Ireland for AIH or go to person/specialist nurse that you can have access to for help and advice. My GP admits that he is not familiar with this condition and the team at the hospital doesnt answer emails so I am here hoping to learn something as I realize that I am on my own with this . My goal is to treat myself gently and give myself time to heal as I do believe that we can heal. I try to stay positive and do what my body tells me to, ie , if it needs rest I take it, If Im hungry for whatever , I eat it, etc etc. Im hoping that the diagnosis of Fibrosis stage 3 will go back to stage 2 and 1 or maybe just stabilize and not progress too quickly . Who knows, stranger things have happened.

Best of luck to you

M

The AIH support group on Facebook has loads of Ireland based members, they can perhaps recommend the specialists they see etc. facebook.com/groups/AIHorgUK

Thank you so very much AyrshireK for that information . I have connected with that group just now so hopefully someone can recommend something.Best Regards.

M

Hi Classicalgas. Thank you for your reply and good luck with your recovery. I too cannot do much exercise due to weakness and dizzyness. I also have Sacroiliitis and suspected Spondyloarthropathy (arthritis) so also in a lot of pain with my lower spine and hips. I have changed my diet though so eating more fresh rather than processed and having a lot of fruit and veg too so hopefully will start to lose weight. I will be finishing Prednisolone in 2 weeks and will be put on other meds, just waiting for stuff to be sorted out.

Keep up with whatever it is you`re doing and hope you get back to a normal way of living better soon

😊

Thanks Petart44, I hope you feel better soon . Take good care of yourself Best regards

M

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