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Old 09-10-2003, 09:08 PM   #1
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Question autoimmune hepatitus anyone?

Does anyone on that checks this message board have autoimmune hepatitus? I was diagnosed 5 years ago and have had many problems since then. i've noticed many postings regarding hep c but none regarding autoimmune hepatitus unless i've missed them

 
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Old 09-23-2003, 06:51 PM   #2
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My daughter has Autoimmune Hepitits. I am trying to learn about this so I can help her.

 
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Old 09-23-2003, 07:38 PM   #3
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I don't know if I have autoimmune along with my hepatitis C, but I have been doing some reading. It would seem that prednisone is the main treatment for non-viral autoimmune hepatitis

alice.

 
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Old 03-09-2005, 12:54 PM   #4
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Lightbulb Re: autoimmune hepatitus anyone?

Hi, I know it has been awhile since you posted, but if you still check this please let me know....I was diagnosed with AIH in July of 2001 and I do alot of research.....

 
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Old 03-14-2005, 06:05 PM   #5
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Re: autoimmune hepatitus anyone?

i have both end stage pbc and end stage aih... let me know if i can help. i do support work for the American Liver Foundation....

 
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Old 03-16-2005, 04:34 PM   #6
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Re: autoimmune hepatitus anyone?

hi, i have stage 4 hep c and found out in december that i also have autoimmune hep. right now i am not a candidate for the prednisone and some other medicine whose name escapes me right now. most days i'm tired, nauseas, cramping and have have fluid. my advice to you is see if you are a candidate for the meds offered. this whole thing is surreal to me but when days are good, i enjoy every moment of it!!!!!

 
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Old 03-16-2005, 04:48 PM   #7
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Re: autoimmune hepatitus anyone?

autoimmune hep is when the immune system in the liver treats the liver as an enemy. it attacks the liver from within. autoimmune hep can lead to cirrohsis and or liver cancer. it is currently being treated with steriods. good luck.

 
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Old 03-18-2005, 01:54 PM   #8
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Re: autoimmune hepatitus anyone?

I have had AIH for about 23 years. I have had 3 bouts of it, each being treated with steroids. I went on to develop ulcerative colitus. Eventually, I had my colon taken out. Doctors thought I would have no more problems with the hepatitus since they felt it was somehow connected with the colitus. But, the hepatitus is back again. They want to treat it with prednisone and something else, but I still have to get my biopsy before I know how they want to treat it.

 
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Old 04-05-2005, 06:24 AM   #9
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Re: autoimmune hepatitus anyone?

I was diagnosed one year ago with AIH. I was near liver failure. It came on very fast. I was in the hospital for 3 weeks. The steroids saved my life and kept me from a liver transplant. So far. I have had many complications from the AIH as well. You are not alone. The side effects from the Prednisone is not fun either!! My liver is only half functioning now. But I am still holding OK with that. I know it is hard to find info out there about AIH. Many doctors don't even know about it! Mine had to be educated from the University docs on how to treat me when I got released from their hospital!!

 
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Old 04-06-2005, 08:32 PM   #10
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Question Re: autoimmune hepatitus anyone?

Hi folks, Iam recently diagnosed with AIH (today) any ideas or help out there? What do you know about this disease? Talk to me?

 
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Old 04-10-2005, 12:32 PM   #11
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Re: autoimmune hepatitus anyone?

Our daughter was originally diagnosed with mono. 3 weeks later she began to retain fluids, swelling in her legs, ankles, abdomen and face. She gained 20 pounds in 4 days.
She is now admitted in the Childrens Hospital in Seattle (I highly recommend this facility). She is thought to have autoimmune hepatitus or possibly Wilson's disease. They have narrowed down her diagnosis with labs and an ultrasound on her liver. They have not been able to confirm her dignosis or the present condition of her liver until she is healthy enough for a liver biopsy.
They introduced a steroid to relax her liver and reverse the condition. It seemed to work. Her condition has improved greatly.
Whether mono leads to autoimmune hepatitus or simply shares the same early symptoms, I don't know. It may be a genetic problem waiting to happen that is triggered by mono/epstien-barr virus.
If you would like to discuss this further, let me know.

 
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Old 04-11-2005, 10:47 AM   #12
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Re: autoimmune hepatitus anyone?

Most of us that have AIH have had mono beforehand. SOme right before, or some like me years before the AIH developed. There is no proven link. Maybe just coinsidence? ANyway, I hope your daughter gets better. Steroids do help with AIH. It is THE treatment for it. They saved my life. I was in liver failure and on the transplant list. The steroids did turn things around. Thnak God!! However, they also have very nasty side effects. I was on high doses ( 80mg daily)for a few months then started the taper down. It's 1 year later and I am totally off of them now. I am in "remission" currently and so far so good.

 
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Old 04-11-2005, 10:48 AM   #13
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Re: autoimmune hepatitus anyone?

beccaben,
what would you all like to know? I will help anyway I can, TIna

 
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Old 04-12-2005, 05:36 PM   #14
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Re: autoimmune hepatitus anyone?

sjkiley,
Hi, I have both pbc and aih. I would really like to swap info if you have a moment. I am new to this board, really any boards. There was no one with the some/any info close to mine to speak with. would like to hear from you.

 
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Old 04-14-2005, 11:02 AM   #15
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Re: autoimmune hepatitus anyone?

Hi.
My 15 year old son came down with Pneumonia last June. He seemed tired all summer. Started pulling out of it and getting energy back in the fall. Took him outside our HMO to get his a Dr. slip approval for Basketball as it was a 3 month wait at HMO. The doc we went to noticed he had retention of fluid in lower legs. Was concerned. Said we should go see regular doc and INSIST on blood tests. Assigned dr. at hmo wasn't thrilled we had gone outside system, told us he was healthiest kid he had seen all week. We insisted on blood tests, they came back low wbc count. 2 months of tests later, we are at the G.I. who says we need a liver biopsy. Comes back micronodular cyrossis or a AIH diagnosis. Its been a surreal round of doctor appointments and blood tests and ultrasounds, biopsie etc. His ALT levels were at 285.
They put him on 40Mg a day of predisone (he has gained some weight, his face is swollen and red, he's moody) and Imuran (a generic has just hit the market thank god, which lowered the cost from 175 a bottle to 10.).
We just got back from doctor who says after 3 months on current meds, his ALT is down to 40! We are starting the step down process on the Predisone, with hope to keep him on 20 mg every other day after we step down over the next 2 months. Keeping imuran a constant.

The whole thing seems crazy. I'm convinced the Pneumonia kicked this off, but the other thing is he's deveoped Asthma, and a sinus issue that lasted all winter long.

So my question is, does or has anyone who has AIH, had pneumonia before the diagnosis, and/or developed a secondary lung issue.

I know that AIH is in the same family as Lupus, MS, and Rhemetoid arthristis. A woman I know with Lupus told me she developed bad asthma and eventually emphesema. Maybe this seems like I am trying to borrow trouble when I have enough but I want to stay on top of this and thought I would ask if there was a connection.

 
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