Autoimmune Hepatitis - Liver & Pancreas Disorders Message Board

vamp36 · 07-25-2004, 08:26 PM

I sanyone else diagnosed with Autoimmune Hepatitis? I was diagnosed in April and am trying to find out all I can about it.

Elli · 07-28-2004, 01:08 PM

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Originally Posted by tinavamp

I sanyone else diagnosed with Autoimmune Hepatitis? I was diagnosed in April and am trying to find out all I can about it.

Hello, I have auto-immune hepatitis and have had it for about 2.5 years. if you have questions I may be able to help you find some interesting sites. Have you had a biopsy, so you know what stage you are at and I hope that you you have a good gastro-enterologist. I was a working Rn while I had it but, have been forced to retire from my job because of a a more serious and fatal disease that I got from taking macrobid long-term for urinary tract infections (repeated). This disease is also an auto-immune disease called interstitial pneumonitis / fibrosis. I have another appointment in about 1/2 hour to see my pulmonologist to find out if and when I have to have a biopsy.I am already on oxygen. When I found out that I had AIH , I felt real sorry for my self ,but it isn't the worst. At least you can breathe!!!

The best thing that I did was to go out and SPLURGE and bought a pure-bred persian kitten. Mozart has brought so much joy into my life,when I needed it the most.Hope things go well for you . Elli

vamp36 · 07-28-2004, 03:29 PM

Thank you for your reply. I ended in the hospital when I was being diagnosed. I was very sick. They had to transport me to the University hospital 3 hours away. My galbladder was dead when they removed it. I do have pancreatitis as well. They did a liver biopsy in the beginning and I have moderate damage and cirrosis has started.. I am going to have another biopsy next month. I am also on Prednisone reduction now. I did come very close to needing a transplant, but my levels started to stabilize. My ALT & AST levels were over 2500!! I am down to 15mg ofpred a day right now. I was on 60mg for a few months. Had 2 relapses so far. I do have some very good doctors. Except for one (h'es a hep specialist at the UW hospital) I don't think he believes me on how I feel. My gastro doc does though. I have so much severe pain in the liver area yet. I know my liver is twice the size of normal. But the pain is unbearable. I am on Mscontin and Dilaudid for breakthrough pain. I just had another ERCP done. It didn't help at all. I cannot do much or it starts to hurt. I just feel tired all the time as well. Heartburn and nausea are everyday things as well. I take meds for these to. I was working at the hospital when I got sick. Now as of yesterday I have been labeled "disabled" . I cannot do to much or I start to hurt so bad. I am getting frustrated as they can't find the source of the pain. DO you have this as well?