Liver involvement...

[karlyt]

Went to visit my new rheumy last week. She was fantastic! Especially in comparison to my last one, he wasn't very supportive at all. But it was refreshing to actually get some answers, even if they weren't all that positive. With my old rheumy, I would have to nag to get any answer from him and that would usually be "oh everything looks fine." That's not exactly the answer you want to hear when you've just had 11 seizures the night before and have been unable to walk without crutches for 2 weeks... Fine? Yeah, right!

But anyway, after seeing my new doctor, it has come to light that my liver has got some damage to it, along with a lot of activity in my brain and blood (I suffer with the CNS, SLE, DLE and the APS strain). It was mentioned that I am more than likely going to be put back onto Azathioprine and Prednisone, however after doing a little bit of reading, there are studies to say that azathioprine can cause liver damage. I know there are a tonne of conflicting studies surrounding Lupus, but I would just like, and I'm sure as many of you also want is, a definitive answer. Just one! Chemo has also been mentioned, so to say I'm confused about what to prepare myself for is an understatement! What experiences has everyone had with the three different types of drug? I have been on azathioprine and prednisone previously, and got ridiculously large, and had to give up my job. I have only just recently returned to work and the last thing I want is to be out of it again. We all crave some sort of normality! So would cytoxan be the way forward? I'm not one to worry about such things as hair loss so that's by-the-by. What is everyone else's experiences with the three various medications???

[Maddieroo]

Karlyt, sorry you seem to have so many things going on due to lupus. I have experienced many lupus related and possibly not lupus related issues with various body parts and organs in the 40 plus years I have had lupus. I was recently diagnosed with something called primary biliary cirrhosis (PBC) although my blood work clearly pointed to auto-immune hepatitis (AIH), both autoimmune conditions that attack the liver. Anyway, I birng this up because I am at a somewhat confusing stage myself and I am interested to hear how your Doctors deal with your liver issues. My understanding is that for AIH the treatment is Azathriopine and steroids. At the moment I take hydroxochloroquine (plaquenil) but they say that is ok for my liver now. And even though I supposedly have this serious liver disease (luckily at a very early stage) I have a fully functioning liver now and not to worry. Don't you just love it? They make you have all these tests including a liver biopsy scare the crap out of you and then say, nah, don't worry so much! Just take the medicine we told you is bad for you to cure this other thing, arrrrg! So confused!