Autoimmune Hepatitis flare ups?

Hi. I am new here. In 2000 I got really sick and went to the ER with Pneumonia, come to find out that my liver enzymes were elevated which blew me out of the water. Since then I have seen several docs, a Gastroenterologist and a Hepaologist and had a Live Biopsy done in the fall of 2003. It was fairly normal, however the LFT`s are still elevated, my Hep doc thinks that it is Autoimmune Hepatitis but is reluctant to start treatment with Corticosteroids because he says they are very powerful drugs. Should I be concerned at this point, I havent seen him in over a year, he wanted my regular doc to monitor my LFT`s every 3 months and if they got really high again (they were 6 times the norm) he would do something then. I am concerned about the mortality rate I am seeing with untreated patients. Should I be concerned? I am not having any pain in my liver any more, however I battle with diarreah almost daily and am tired, it takes very little for me to get worn down. I have headaches a lot and nauseau. Am battling Kidney Stones right now and on my second dose of antibiotics for them. I am really worried that my immune system is comprimised. Any advice on what I should be doing at this point? My family doc ran blood work last week and wont have the results until next week sometime. Im scared though. Ive been untreated since I found out in 2000. Is this the norm?

Hi Mommanelda and hello again Marg
I have not been on-line for some time as my computer went down again and only just got it mended.

Mommanelda
Like Marg I was Diagnosed with AIH but had probably had it for several years before this. My liver biopsy showed fibrosis but not cirrhosis and hopefully with the prednisolone and cellcept that I am now on it will not get any worse. I did have several flare ups after starting the medication but once my hepatologist found the right combination of medication to suit me I have stayed fairly stable apart from some minor side effects of the drugs which I consider a necessary evil. It's not so bad once you start to tapper off.

I do not wish to alarm you in any way but I really agree with Marg that you should get a second opinion. I only had my AIH diagnosed because I asked for a second opinion and by this time I had been ill for several years and although under a consultant was never given any medication and actually told a viral hepatisis when in fact I did not.

Nothing is more important than your health and I can tell from your email that you are getting stressed worrying about this situation. It is very likely that you are OK and it is the stress that is making you ill but it is just too important to leave it to chance.

If your LFTs are not too high it might be that your doctor or heptologist thinks that they are not high enough to warrant putting you on a drug that might cause you more problems than your symptoms now especially if you are not flaring very high.

Still whatever the reason, it is your body and your life and your illness and you have a right to ask and keep asking until you have all the answers you need. I wish I had had the courage to do it long before I got round to it.
I'm am certainly no "wallflower" any more when it comes the consultants, GPs (I'm in England) or any other health professional. I used to be a bit in awe of them but now I see them as just doing a job and that job is to look out for my health in best way that they can - that's what they swore an oath to do - so you just make as much noise as you can until someone puts your mind at rest.

Look after yourself.

Shirley

PS how are things with you Marg?

I'm actually writing this for my Mother who doesn't have a working computer (currently).  My Mom was recently diagnosed with Autoimmune Hepatitis.  She has also had a second opinion and both Dr.'s have said that she is not at a point to start the medication yet, but will have her liver levels monitored every 3 months and a liver biopsy every 3 years.  Munga Mama's big question is:  How do you manage the daily symptoms (nausea, diarrhea) better?  Has anyone modified their diet and found that something works better than something else?  Is anyone taking any prescribed medicine for this?  Munga Mama is currently trying a small dose of medicine called cholestyramine that does seem to help the diarrhea, but not the nausea.