Lupoid Hepititis?

[Billydude]

I was looking over my paperwork from my last rhumy visit and see that I show posititive for Lupoid Hepititis.   We talked about Sjs and Reiters Syndrome but she never mentioned Lupoid Hepititis or Autoimmune hepititis.    That makes four autoimmune diseses that I have now so not sure which is primary secondary thirdly and fourthly.   I have Sjogrens,  Celiac Disease,  Reiters Syndrome and now Lupoid Hepititis.   Does anyone else have this Lupoid Hepititis and can share info with me.   Now I'm REALLY starting to worry.
Steve

[Scottietottie]

Hi Steve 

I'm afraid I don't know anything about lupoid hepatitis but if you've seen it in your notes, I suggest you get in touch with your doc and ask her to explain it to you. It's always easier to deal with a 'known' rather than an unknown.

http://www.gastromd.com/education/autoimmunehepatitis.html

That's a link I found which is reasonably reassuring - not that one wants to collect any more diseases!

Take care - Scottie 

[wordnerd]

I have autoimmune hepatitis... strangely I found out basically the same way... when I got copies of my all my doctor's reports from my last hopitalization.  They never bothered to tell me until I asked if it was a mistake in their report 

I don't have much info on it either.  All I know is when everything else was flaring my liver enzymes got really elevated and since I don't have viral hepatitis they are assuming it's autoimmune.  Also more recently my liver was apparently enlarged.  I plan to ask my rheumy about it when I see him next which may be sooner than I thought.

If I find out anything useful I'll let you know...

Take care!

-Lauren

[Billydude]

Thanks Lauren.  I thought it weird too that it was never verbalized to me.  It just showed positive on my test results on the papers I got back.  I would have thought it worth mentioning to me.  It seems serious enough to advise the patient.

[Linda196]

Steve and Lauren, when you say you saw in your records that you had lupoid or autoimmune hepatitis, what exactly indicated it? It's a fairly complicated diagnosis, requiring positive ANA, ASMA (one of the more reliable autoantibodies, present in 80% of people with AH), possibly anit-Actin, tests to rule out virus presence, and in most cases a biopsy for confirmation. Most doctors don't even start these tests until the basic liver function tests (AST and ALT) have been highly elevated for a continuous period of six months or longer.

It's also possible to have enlargement of the liver (hepatomegaly) without alteration of the liver function tests, as a secondary development of many other diseases, including autoimmunities.

Is it possible the written records said something like "the possibility of", "potentially" or "indicative of" hepatitis?

[wordnerd]

Well I know I have a postive ANA, negative virus tests, and during a flare severe pain in the liver region with elevated AST and ALT which improved with high doses of steroids.  I haven't had a biopsy though.  I think since I also have AI Pancreatitis my doctors assumed that I have developed AI Hepatitis.  Their reports from my last hospitalization state that I have it.

More recently my liver was enlarged but the liver function was normal, but I'm on steroids and immunosuppressants now.

I guess I'd need a biopsy to have a definitive answer, but I'd rather pass if its not necessary and the treatment is the same as for all my other AI diseases.

[Billydude]

I just pulled it out again.  It says  "Weakly Positive, May Be Present In Acute Viral Hepatitis, Lupoid Hepatitis Infectious Monocleosis and Malignacy.  High Positive. Highly Suggestive of Active Chronic Hepatitis."   Then someone hand circled the words Lupoid Hepatitis

They give a reference range where this applies if you fall between 1:20 and 1:40 which I do as my Smooth Muscle Antibody Smooth Muscle AB tested at 1:20.
Steve

[Linda196]

Steve that looks like a weakly positive result, so the "Weakly Positive, May Be Present In Acute Viral Hepatitis, Lupoid Hepatitis Infectious Mononucleosis and Malignancy" reference probably would apply (note the word may). Someone probably circled Lupoid Hep because it would fit better given your autoimmune history.

You should probably ask your doctor for an explanation, if for no other reason than to ease your mind.

[Billydude]

Thanks Linda,  I have emailed my doc for an explanation.   It was explained to me that I have "fatty Liver".  But that was the only thing that I was previously told.   Its all so confusing!

[Scottietottie]

Hi Steve 

My GPs told me I have fatty liver but she's never told me what to do about it so I'm just forgetting about it until it bothers me!

take care - Scottie 

[Billydude]

My doc said I have fatty liver too.   I got ahold of my rhumy and said that the result was only because of my Celiac disease.