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
The following user gives a hug of support to sunranhal: luyingjie (01-25-2012)
The Following User Says Thank You to sunranhal For This Useful Post: luyingjie (01-25-2012)
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.
The Following User Says Thank You to AliceBlueBelle For This Useful Post: luyingjie (01-25-2012)
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.....
The following user gives a hug of support to aerial261: luyingjie (01-25-2012)
The Following User Says Thank You to aerial261 For This Useful Post: luyingjie (01-25-2012)
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....
Welcome. Your knowledge and personal experience is so welcome here.
There is very little out on the boards on these two diseases. Please do not get frustrated with the small numbers. I am willing to bet that word will spread and people will be very glad to have the opportunity to talk about these two issues.
Hang in there with us, please.
thanbey
hepatitis c outreach project
www.hcop.org
...all information is intended for general information and is not an attempt to speak to the specifics of any one person's medical situation or decision...........
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The Following User Says Thank You to thanbey For This Useful Post: luyingjie (01-25-2012)
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!!!!!
The following user gives a hug of support to niecie: luyingjie (01-25-2012)
The Following User Says Thank You to niecie For This Useful Post: luyingjie (01-25-2012)
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.
The following user gives a hug of support to niecie: luyingjie (01-25-2012)
The Following User Says Thank You to niecie For This Useful Post: luyingjie (01-25-2012)
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.
The following user gives a hug of support to safyblue: luyingjie (01-25-2012)
The Following User Says Thank You to safyblue For This Useful Post: luyingjie (01-25-2012)
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!!
The following user gives a hug of support to vamp36: luyingjie (01-25-2012)
The Following User Says Thank You to vamp36 For This Useful Post: luyingjie (01-25-2012)
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.
The following user gives a hug of support to YouKnowWho: luyingjie (01-25-2012)
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.
The following user gives a hug of support to vamp36: luyingjie (01-25-2012)
The Following User Says Thank You to vamp36 For This Useful Post: luyingjie (01-25-2012)
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.
The following user gives a hug of support to chichiagain: luyingjie (01-25-2012)
The Following User Says Thank You to chichiagain For This Useful Post: luyingjie (01-25-2012)
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.
The Following User Says Thank You to zelphiablue For This Useful Post: luyingjie (01-25-2012)
I have always been healthy. About 2 years before I got sick with AIH, I had pneumonia twice for the first times. Now I've been constantly sick with colds and such. But that could be from my low immune system now. Tina
The following user gives a hug of support to vamp36: luyingjie (01-25-2012)
The Following User Says Thank You to vamp36 For This Useful Post: luyingjie (01-25-2012)
I have 4th stage PBC and 3rd stage aih, with 4th stage cirhossis from the two diseases overlapping... my liver works at 20% capacity right now, but that is enough to keep me from being listed...LOL i also had outrageous numbers in the beginning with a 2268 ast and alt and alk phos in the 1000 range, billi was 22.6! Prednisone and imuran are the protocol.... prednisone is rough stuff. they only give it to you if the billi is high! there is life after these numbers... mine have all returned to a near normal range.... none the less the damage is done and so a transplant will be done at some point.. my advice is go to a good hepatologist, take your meds and have a healthy and positive attitude!!
The Following User Says Thank You to OhioMOM For This Useful Post: luyingjie (01-25-2012)
Here's my testimony. 43 y/o male, s/w ohio area, before aih - general good health (husky big framed guy), live in a rural area raising thoroughbred horses from 1997 to present (never know. . . may find some link), married, 3 children from 16 to 10 years of age. Been on BP meds for about 6-7 years. Oh yea, sinuses most of my adult life - a curse for most living in the Ohio river valley area.
Starting the 4th qtr 2001 started loosing my energy. Pain in the a** to go to work plus my other chores at the barn twice a day. In Dec. 2002 we went to the doc attempting to diagnose my moodiness and low mental spirit as something Zoloft could take care of. About mid-Jan 2003 my wife started getting concerned of the yellow eyes. Went to doc our GP doc again, urine strip was out of control, went to hospital immediately for blood work, had the high enzyme #'s (1500 and 1600). Put me on antibotics for a week with order not to go to work. 1 week later no change in liver #'s. Went in hospital 3-4 days for testing (led by my GP doc). Throughout the "normal" test he couldn't find anything. For some reason he felt compelled to order an "ANA" test - something he's never done - this test came up positive. Shot me through the MRI and did a liver biopsy. Sent the results to University of Cincinnati and passed me onto them. I went on a prednisone regimine to get the immune system back into control, then slowley wienned off of that and ramped up on the immuran. Currently on 150 mgs of immuran (250 lb body) and been on 6 month visits ever since I think the start of 2004.
So far so good. Got a visit coming up in a month or so. The specialist doc has mentioned that, if I wanted to try it in the future, to possibly wien me off the imuran. Think he said something like about 20% sucess rate. Too early to make that decision, and if I have no sucess, could lead to more fibrosis. Also, I think he determined that my liver sustained either lever 1 or 2 damage. He's real satisfied with results, as he both speaks this and his facial gestures indicate this also. Life has gotten back to somewhat normal - don't have the energy I used to - probably 80%.
We'll I've got to run - go to work. I was compelled to do some aih surfing and came across this site. I squeezed as much as I could into a 1/2 hour of typing. ALL AIH'ers, hang in there and remember to take your vitamins - a multi and calcium. I'll come back later for more research.
Tony.
The Following User Says Thank You to aqb10 For This Useful Post: luyingjie (01-25-2012)
sounds like you are doing ok..... cincinnati has a good hepatology program.... i couldnt take imuran. it put me in the hospital for a week. now take cell cept instead. it is easier for me to tolerate. i hope to keep the tx as far into the future as i can.
what stage cirrhosis are you? it will state that in your biopsy!!
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.....
