I have just been informed about my liver result but was told they could not find out the reason for the scarring of the liver. I thought it could be the autoimmune system but will just have to wait until I see my consultant in February. I suppose no news is good news.
Jane
It's awful to be without a definite diagnosis, but, for some that is just how it goes and they never give the reason a confirmed name just get a 'Cryptogenic Cirrhosis' diagnosis which doesn't help going forward because you don't know what to do for the best in helping your liver.
My hubbies first biopsy was inconclusive ....... too small a sample to be of sufficient diagnostic use but they plumped for a diagnosis of cirrhosis due to 'burn't out AIH'. Some hint in blood results, presence of a 'rogue antibody'. Even 2nd biopsy done at the transplant unit just came back as confirming cirrhosis but still no definite diagnosis. They reckon when he 'flares' his blood results only marginally go out of range - which is atypical of AIH.
We saw a professor at transplant clinic a couple of weeks back and we asked him about the possibility of reducing hubbies prescribed prednisolone because doctors have told us it hasn't done anything positive for his blood results and they planned to wean him down - he's been on 5mg for about a year now. However, professor said because there was a 'hint' of an auto-immune cause to his cirrhosis they would rather he stays on the 5mg as a maintenance dose just to keep things in check.
So, I guess they aren't even sure of hubby's causal factor either & it could be similar with yourself.
Look after yourself and battle on and fingers crossed they might get you an answer sometime though at the end of the day if you can't remove the causal factor and they can't treat it you just have to look after the liver you have left, the best you can.
All the best going forward, Katie xx
hi pishi1
no its not really good, to combat your condition you need to know the cause. Knowing the cause means they will know what treatment path to take. Not having an answer is going to mean more tests etc.
hopefully your consultant will have some more ideas.
Hi Jane. Sorry to hear you have cirrhosis. Your situation sounds like mine.i was finally given a diagnosis of AIH after 9 months of tests. It was more a case of what hadn't caused it all the way through. I still don't score fully for it but that's what I'm being treated for because I was eventually given a trial of predisolone and my lft's reacted favourably so am now on predisolone and azathioprine and it seems to be doing the trick. I haven't been unwell and my inflammed liver was discovered back in Feb by chance.
Good luck with the diagnosis. X
Cirrhosis and liver function
Liver biopsy results are now in
2nd Liver Biopsy result
cirrhosis of the liver
Cirrhosis of the liver
