Has anyone had liver involvement?: I have had lupus... - LUPUS UK


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Has anyone had liver involvement?

bennett profile image

I have had lupus for over 25 yrs now with very few flare ups. I have the usual joint, muscle, migraine and tiredness along with a few other autiio-immuine low grade symptoms. It is only in the past few years has my liver become involved. My enzyme level fluctuates but they are considering a biopsy if they remain above normal on three consecutive readings. What i would like to know is if anyone else has had or has liver involvement, a biopsy, and if it were connected to the lupus. Many thanks for your help. Rosemary

6 Replies

Hi Rosemary

I've not had liver involvement but a number of years ago I was in hospital with someone that did. I just think lupus can cause everything. The list of problems just seem to be endless.

I've had kidney failure & had a transplant 16 years ago.I have had fluctuating enzyme levels though but it all resulted in medication I was taking at the time. As soon as I stopped the drugs it all calmed down thankfully.

All the best


Hi Rosemary.

I have SLE and autoimmune hepatitis. The liver problems are a seperate autoimmune disease to the SLE. My consultant tells me that If you have one autoimmune illness you are more likely to have another one( I have four). The liver problems were diagnosed by biopsy which sounded very scary but in actual was fine, the worst but was lying down flat for six hours afterwards. My liver levels still fluctuate 10 years after I was diagnosed, I do have a fantastic liver Doc and lupus Doc who work together to sort me out. I wish you lots of luck and hope that you get sorted. Do get in touch if you need any info on biopsy or indeed anything else.

(((((hugs)))) Ann x

Hi Rosemary, like Ann I also have autoimmune hepatitis as well as SLE and a few others. My blood results also fluctuate but it is manageed very well by my rhuemy. Hope they help you :-) x

Hi Everyone, this has been very helpful and it is good to know of others. Just as you mentioned Ann that the liver problem may not have anything to do with the lupus but another auto-immuine - this is what my lupus Doc is now thinking and liver doc. I have come off all medication on two different occasions to see if it was due to medication - there was no improvement actually they were higher! Thank you all very much for taking the time to respond and for your encouragement and good wishes. Trust you are all keeping well - one thing we don't need to worry about at present is the sun!!! Thanks!

Hi Rosemary. I have SLE and auto-immune hepatitis and the one thing that keeps me okay is mycophenolate.I have been on it for 5 years now and am due for another liver biopsy next year.At the moment I'm having radiotherapy for DCIS (breast cancer) today is my second day and I'm still on my medication, although I'm taking it with me today as they want to read the leaflet.As long as I take mycophenolate I'm fine.I have a blood test each month.I didn't know I had Lupus until recently I always thought it was my liver that had caused me the fatigue and joint swelling and before my auto-immune hepatitis was diagnosed I was in steroids for a year.Once auto-immune hepatitis was diagnosed and I went onto mycophenolate everything calmed down and I was able to live a normal life until just recently when a mamagram showed a small lump.Sometimes I wonder having taken immune suppressant tablets for so long can affect you in this way.

Livers are very resilient.

You might want to investigate using a Nutritionist to help minimize the stress to your already lupus stressed liver. Avoiding particular foods can be very successful and is used widely with patients with hepatic dysfunction / disease.

It imperative to eliminate all alcohol intake. If you have not already done so do it ASAP.

Be well soon.

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