Autoimmune Hepatitis

11-28-2009, 02:56 PM

I have just been diagnosed with Autoimmune Hepatitis. I had routine bloods prior to a colonoscopy 3 months ago when it was discovered that my liver enzymes were elevated. ALT was 486. Auto antibodies ANA SMA AMA were negative. After multiple bloods & radiology tests I had an MRI with contrast Primovist which was specific for the liver which identified a possible infiltrative process. I had to then have liver biopsy as my specialists were at the end of the road with still no clue as to what this mass/process was that showed on MRI. This confirmed that I have severe immunological hepatits with features of submassive hepatitis with necrosis and parenchymal collapse.

So I have started on Prednisone 25mg with weekly bloods for my LFTs and PT/APTT to assess its affect on my liver function. I will start Prednisone and Imuran in about 3 months. Prior to diagnosis, I was pretty much asymptomatic. Looking back though, the symptoms I DID experience were that my menstrual period only lasted for about 1-2 days at a time. I had mild cramping in my knees and toes. I could not be bothered doing anything...but still managed to continue my role as a busy working mom etc. Just couldn't be bothered doing anything that wasn't a must! My journey has just begun I suppose.

11-28-2009, 03:11 PM

I hope things get better for you. Did they say why this happened? Or is it just one of these things that cant be predicted?

11-28-2009, 11:08 PM

Thanks so much for that. Like all autoimmune disease, they don't know what it is that kicks it off. They do suggest possible causes like drugs or viruses. Drugs/medication isn't a possibility for me. I did get very unwell while travelling through Europe 4 months with chest infection, tonsilitis etc and really pushed my body by not allowing any rest time and continued travel at very hard pace (travel itineraries don't allow for illness!). My specialist sees that as the only possibility for sending my immune system into a spin and maybe, only ??? a cause. Looking back I really regret flogging my body so much while it was so sick trying to cope with that. Do you have AIH? I am just dying to talk to others and read about there experiences also.

12-06-2009, 10:41 AM

I too have autoimmune hepatitis. I was diagnosed when I was taking care of my mother so I was really run down. At first they said hep a and that made sense to me since we were eating fastfood everyday and I though somebody might not of washed their hands. I turned yellow(highliter yellow) and couldn't stay awake even an hr at a time. I slept alot. I had a liver biopsy that showed cirrohas and I don't drink. I had an MRI with contrast and I now have ultrasounds every 6 months. I also take medications. I had so much fluid I was in the hospital for 4 days and there I lost like 30 lbs since I had that much fluid, I looked pregnant but it was all that fluid. I aslo got shingles since my immune system is bad. Never would of guessed thats what it was since I only had heard of older people getting it, but I think I caught that early enough. I also had a bout with itching, it felt like crystals were coming out of my skin. It was wierd, but got medicine for that and that stopped. My bones and joints hurt. If you would like we could email each other.

12-07-2009, 09:45 PM

That would be fabulous! I have type 2 AIH which is accounts for a very small percentage of those with the disease. 80% of cases have Type 1. Would love to know all/more about your treatment etc and how long it has been since you were diagnosed? Chin up

12-09-2009, 04:54 PM

I was diagnosed in 2006. I have signs of 2 types, but dr. called another name, not type 1 or type 2, I will have to check and see what terms he called it. That makes me unusual in the disease.

12-11-2009, 05:27 PM

The type is determined generally by the autoantibodies you have. I too have not showed the autoantibodies for type 1 or the LKM for type 2. How are you going with it? What meds are you on?

12-15-2009, 06:28 AM

I have been searching for answers since july 2009 liver enzymes wereAST510,ALT526,gammaGT570 phosphate 196 went off all meds avonex 4ms statin 4 colesterol no aleeve etc. name a test I had it-- finally-liver biopsy calls it chronic hepatitis fom a poor autoamune system(MS) last blood test AST156,ALT193,gammaGT428,phosphate181 looks like liver is healing itself I do diet exercise and rest good luck-pat

Autoimmune Hepatitis

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