I havn't actually got my diagnosis yet - waiting to see rhematoligist - but the two conditions they seem to be querying with me re autoimmune hepatitis and lupus. I had positives on ana and anti-smooth muscle antibodies which are quite specific apparnently. I guess i wondered if yod considered that the liver inflammation may or may not be the lupus?? Have you got other organ involvement with the lupus? do you agree with that diagnosis? Just wondering and hopingto learn from yu too as this is all new to me.
Love Manxie xx
Hi, I was the same, thought it was autoimmune hepatitis. Had first liver biopsy done Sep 2007 and they found abnormal ANA results. After more bloods taken in Feb 2008 and 2nd liver biopsy said it was the lupus that had caused the inflamation. All my liver function bloods are coming back pretty normal though!
No, I haven't got any other organ involvement thank goodness. Occassional joint pain and some skin rashes. The tiredness gets to me but since been on the steroids been feeling fab. It is all really confusing at times.
Have noticed a lot of members seem to know exactly what all their blood results are. Did you get copies of these from rhuematoligist.
Hope you get on ok and speak to you soon.
Thanks for friend invite- makes all difference to have folk who understand- properly! I havnt seen my rheumatoligist yet- still waiting been referred by Gp (primary practitioner) and I have no idea how long waiting list is.
Im glad that you have no other organ involvement -sounds like docs have caught it for you early-ish? and that they are at least on ball re tests etc? Mine isnt so good - he needs pushing all way and I kinda wonder how long all this has been going on undiagnosed as Ive had joint pains and tiredness, oral and nasal ulcers and migraines and itchy rashes too for a long time. Kinda frustrating!
I got test results by asking the nurse who took my blood test (having those quite regular for thyroid which has been recently diagnosed as underactive too!). YOu have a legal right to those so push if you want them. Then when you have them there is a site on
which helps you to determine possible meanings - but it is only possibilities and usually lists at least three possibilties - it is a good site though.
Hope to speak again soon and pleased your liver results are so far ok.
Love Manxie ( Ali )
Back in 1999, I started having many problems, and liver was a problem also. Went to the doctor who looked at the malar rash on my face and said I had lupus. tested my blood and confirmed the lupus. sent me to a rheumatologist, who said "You don't have Lupus". I then went to a gastroenterologist, who did a liver biopsy checking for autoimmune hepatitus. Turns out I just have NASH, which is NON-ALCOHOLIC STEATOHEPATITUS. Basically, my body isn't flushing the fats properly so it builds up in there and gives me a larger than normal liver, with the wonderful pain that goes with that. The gastro put me on lopid to take the fat out of the liver, and I also started taking Niacin NO FLUSH, as well as Milk Thistle and L-Carnitine. All helped so much, that my liver enzymes have come down to almost normal, to the point that the docs aren't real sure any more that I have Lupus. I have the fatigue and joint pain and malar rash, and a very low positive on the enzymes. I will see a different rheumy next wednesday. I hope she doesn't say "you don't have lupus" without telling me what I do have. I truly need to know what's going on. I'm currently very tired. And my liver hurts again, cause I gave up the pills for a couple years. Got tired of taking meds. Maybe she'll put me back on the Lopid. I DON'T want another liver biopsy. I prefer to give birth to quintuplets than to have a liver biopsy. LOL! Let us know what you find out. Take care.
Hi there, thanks for replying. Gastro has told me its definately the lupus that has caused the liver inflamation and not autoimmune hepatitus. Now on course of prednisolone. This lupus is one heck of a disease to diagnose. sometimes feels like your going round in circles.
Been like you for a year, yes it is, no it isn't. Anyway, in Feb Rhuemy and Gastro have said it is. Know what you mean about liver biopsy. First in sep 2007 wasn't too bad. Had to have another in feb this year and was awful. Expecting another shortly as bloods are coming back pretty normal!!! But ANA's abnormal! Waiting for GP to send me a copy of my blood results (still waiting after two phones calls). Still trying to get my head round what everything means. Wouldn't know i had anything wrong with my liver. No pain or discomfort at all. Just the usual lupus ones. Mainly joint pain, tiredness and faint skin rashes.
Hope you soon get sorted with a diagnosis and speak to you soon.
Hi, just to let you know I keep all of my blood work copies & look up my abnormal labs here.....