A little Lost

[LHR007]

Hi today I received a letter through the post to state that following a CT and MRI scan I have a raised possibility of cirrhosis with Portal hypertension. I have done all the Googling...appointment with consultant to follow. I tested positive for smooth muscle antibody so there is a possibility this is an immune hepatitus (I think) Is there anyone who has had something similar to tell me just what my prognosis is... I recovered from bowel cancer 7 years ago and am currently 56. I feel so low

[AyrshireK]

Hi LHR007, my hubby has this very same diagnosis. He was diagnosed in 2012 following a massive upper GI bleed from burst varices (due to portal hypertension). He also has the rogue antibodies which indicated an auto-immune cause though in his case when they did a liver biopsy (actually now two liver biopsies) his AIH is deemed burned out as there is no ongoing inflammation - his liver inflammation levels in blood tests are also normal.

What they will need to establish in your case is if you have any ongoing inflammation - this will be via blood tests looking at your ALT and/or AST levels plus possibly a liver biopsy. This looks at the liver on a cellular level and will be able to tell whether and where there is any ongoing inflammation.

AIH is usually brought under control with an initial treatment of steroids (usually prednisolone - alternatives such as Budesonide are contraindicated in already cirrhotic patients) and once the inflammation is brought under control an immune suppressant is introduced to try and calm down the immune system and stop it from continuing to attack the liver. In my hubbies case as he has no ongoing inflammation he merely takes 5mg prednisolone daily to counteract any minor 'flares' but isn't on an immune suppressant.

He takes other medication to treat side effects from his cirrhosis and went through a rigorous banding regime to get rid of oesophageal varices.

There is an amazing Facebook group at:- facebook.com/groups/AIHorgUK with over 2000 members who are all either AIH patients themselves or whom support loved ones with the condition. There are members on there who have had AIH diagnosis and even cirrhosis diagnosis for 20+ years and are doing fine now there condition has been brought under control. If they can't get it under control or liver becomes too badly damaged there is the potential for transplant and there are members on the Facebook group who have been through that too. (My hubby was assessed and listed in June 2014 but delisted after 10 months when his condition stabilised and took him out of the qualifying criteria).

You need to enquire of your doctors regarding ongoing inflammation, are they going to do a liver biopsy? What are your blood results showing? Treatment options going forward. If you find you are at a hospital with very little knowledge about the condition then you can ask for referral to one of the main liver centres - the transplant centre's especially are very good on AIH and immune suppressants as these are the same drugs which are used post transplant to prevent rejection.

Best wishes, Katie

[LHR007 in reply to AyrshireK]

Good Morning Katie

I cant begin to tell you how much your message has helped. Seems to have shone a little light on my situation, the information shared is also very helpful and has re-enforced my thought process that I need to understand what is going on in order for it to be stabalised and hopefully remove/lessen the risk of more damage. I have a half hearted diagnosis of sarcoidosis of the skin and lung about a year ago...then the respiratory consultant said no it wasnt Sarc and was at logger heads with the dermatolgist in terms of diagnosis. Look back to January 2019 I think it was all Liver realated, but who knows. My bloods were showing high ACE and very high Gamma GT 200 plus. The further tests only showed the Smooth muscle antibody raised in isolation (no other more indications) I will try and get my latest bloods and see what they say. I also have noticed for the last month a kind of rattle around my heart area (left side) linked in respiration intake. So Google strikes again driving me mad with explanations. I have radically changed my diet although I wasn't very overweight I had alot of swelling in stomach area which now seems to have flatened slighty.

Thank you again

Kindest regards Jan

[Hidden]

Good afternoon LHR007,

Welcome to this friendly forum.

As you can see our forum members will be a great support.

I have included links to information on the British Liver Trust site on Auto Immune Hepatitis (AIH) ,cirrhosis and liver disease tests explained.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in...

These may be useful in helping to guide your next consultation.

You can also call the nurse led helpline on 0800 652 7330 Mon-Fri 10am -3pm if you would like to chat things through .

Best wishes ,

Trust9