Has anyone else had liver problems following a lu... - LUPUS UK

LUPUS UK

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Has anyone else had liver problems following a lupus flare

juneybells
juneybells

I have had lupus for over 30 years, very rarely drink, have now been told I have autoimmune hepities AIH. No one checked my liver functions for several years when they did lots of damage has been done, may need a transplant. Just wondered if this had happened to anyone else

9 Replies
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Hi

My AIH was diagnosed before my Lupus. My Reumy said it was rare, but 10 minutes searching Google soon highlighted to me it's not; in my opinion, the two autoimmune diseases can strike at the same time - at a guess, most people suffering AIH wouldn't get diagnosed with Lupus because AIH symptoms are so similar.

Hope that helps

I will let you know as I am having a flare and one of the bloods my GP has arranged on Tuesday is GGT which I have looked up and is for the liver. Don't know why and what has indicated this so wait and see! And I never drink now and very little for 30 years. Very sorry to hear your news I guess I am lucky he is testing everything!

juneybells
juneybells in reply to saranne

Sorry to hear you're in a flare but its good that you are being tested. Really hope your liver is OK. Good luck with the test x

I've actually started the journey towards the lupus diagnosis from a hepatic perspective. I started by being really tired, went to GP thinking that it is something simple like anaemia. He did some tests and the liver function tests came up high and ANA positive. So he sent me to a hepatologist who checked everything, including liver biopsy. That came back ok, it didn't show AIH. The liver function tests continued to be high for about a year after that and meanwhile other symptoms went crazy and lupus was diagnosed. At the moment both the rheumatologist and the hepatologist lean towards lupus being the cause of the elevated tests, there is a thing called lupoid hepatitis. I've just had a ct scan and a fibroscan to check for liver scarring because after 3 years of bad liver tests I'm concerned, as you can imagine.

Even if I did the biopsy that didn't show AIH, I'm still cautious about liver damage and the possibility of it occurring anyway. Liver has an amazing ability to regenerate but because of that it doesn't show many symptoms when it is struggling. So it doesn't get tested much.

Have they already put you on medication for it?

Thanks for the replies, over 60percent of my liver is scared now as they can't stop the inflammation although its been stable for the last three months. I'm on prednisole, hydroxychloroquine and azathioprine. If the meds don't stop further damage then I will need a transplant. Perhaps lupus sufferers should ask to get liver test more frequently.

Purpletop
Purpletop in reply to juneybells

Are you taking turmeric? I have been taking those twice a day since January this year and the tests have improved during the past month. The hepatologist is skeptical about it but I have not changed my medication otherwise, other than added turmeric. It seems that it has taken time to work but it is worth a try. Here is an article about the effect it has on scarring and inflammation of the liver

sciencedaily.com/releases/2...

juneybells
juneybells in reply to Purpletop

No I'm not but I will give anything a go got to be better than a transplant

Thanks will let you know how it goes. X

My GP is testing for this, will get results this week. Rheumys haven't bothered even tho I have had high liver enzyme results for over a year and I am still awaiting a diagnosis of either RA or Lupus or combo of both. Good luck and hope the meds stop it in it's tracks.

Good luck with the test hope your liver is OK. Fingers crossed results will be good x

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