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Old 08-24-2002, 02:54 PM   #1
ayerski
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Question Anyone have Auto Immune Hepatitus?

My mom has auto immune hepatitus and feels like she is the only person who has this rare disease. We live in Chattanoooga, TN, and there is no one in our area that we are aware of who has a.i.h., and she is constantly telling me how much she wishes that there was someone else who has this disease which she could talk to and share with. Please let me know if you or someone you know has auto immune hepatitus so that I can get you/them in contact with my mom.
Thankyou,
Matt

[Matt, please note that these message boards may not be used for off-board contact. Email addresses are not allowed to be posted here. All discussions must be on the message board, only. Thank you ]

[This message has been edited by moderator2 (edited 08-24-2002).]

 
Old 01-27-2003, 11:58 AM   #2
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My very close friend has AIH. She just got the diagnosis 1 month ago. She has bad days and good days. She uses alot of humor to cope. It's hard for me to see her in such pain. How do you handle it with your mom?

 
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Old 01-31-2003, 09:13 AM   #3
ayerski
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Great hearing from you. My mom has been diagnosed with AIH since 1995. She has gained over 100lbs. due to the prednizone, and she experience alot of pain every day in that she is dealing with Fibro Myalgia at the same time. My mom is over 60 and a transplant was not an option for her, and she is very limited in what she can do now due to the pain and her constant tiredness, which is sad because she was always on the go helping others. She gets very depressed being a people person but not being able to get out to see others and being stuck in the house dealing with persistent pain. Overall I feel that she has handled this all extremely well and keeps a postive attitude as best she can in the midst of her condition. I am on a lunch break and my time is up now. I hope to talk with you again soon. I will read your message again to see if I answered everything that you asked. Please offer any advice and ask any questions.
Thanks, Matt

 
Old 02-24-2003, 06:08 AM   #4
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your not the inly one out there with this rare disease. my wife was diagnosed with AIH when she was 23(1999). her liver was almost at complete failure when they transplanted. her amonia was so high she was a total different person. she had a successful transplant but in oct of 2002 she had to have another. this liver was taking great and the body was accepting it well until her AIH acted up again and attacked her liver. this is going to be her third liver transplant and we are on the list and waiting. being as young as she is and having two kids makes this all very difficult. lucky for us family is more than willing to help. her hopes are high and we hope for the best.

 
Old 11-30-2003, 03:52 PM   #5
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Re: Anyone have Auto Immune Hepatitus?

Hi Matt,
My name is Cathy and I was dignoised with AIH in 1986 I was 30. They gave me 5 years if my body didn't respond to the treatment. Well I'm still here and I'm doing great. I took Prednisone for 14 years and imurane for 6 which has now attributed to having osteoporosis in my left hip. I learned that a positive attitude helps and I can't say this enough. No matter what try to stay positive. I would get very tired somedays and I couldn't sleep others. The prednisone gave me stomach aches which they had to treat with prilosec. You had to be careful not to get sick.
Back then there wasn't much information about AIH. Everytime a test came out for a hepatitus C & D they tried to see if that was what I had. In the beginning they just called my condition non A, non B hepatitus. Then finally decided in 1989 just before my daughter was born I had autoimmune hepatitis or chronic aggressive hepatitis.
They couldn't figure out what I had. I had gone down to 98 pounds and was slightly yellow. They did a liver biopsie which showed I have cirrhosis of the liver. I will be having another one next year.
I have just found a book "The Official Patient's Sourcebook on Autoimmune Hepatitis: A Revised and Updated Directory for the Internet Age" By Icon Health Publications. This seems to be a good book. Any questions just ask. Hope I given some help.

 
Old 11-30-2003, 10:00 PM   #6
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Re: Anyone have Auto Immune Hepatitus?

what causes this?

 
Old 02-24-2008, 02:05 AM   #7
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Re: Anyone have Auto Immune Hepatitus?

Hi I am new to this and I read your response to Matt,i am very scared about this auto immune thing and I can see that you are coping well with it. Could you give me a heads up on how I can cope? need to talk to someone,thanks,sherryk62

 
Old 02-24-2008, 01:27 PM   #8
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Re: Anyone have Auto Immune Hepatitus?

Hi guys sotrry to butt in but any of you with this share your symptoms please? I was tested for it and have a 1 in forgot how many chance of developing it hopefully l wont!! Good luck all xxx

 
Old 02-25-2008, 08:35 AM   #9
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Re: Anyone have Auto Immune Hepatitus?

Hi I have auto-immune hepatitis. Still trying to cope,at first my symptoms were not there at all,my liver enzines went down after being tested for 2 years =blood tests every 8 weeks,then every six months and then once again every year. This year without warning had a bad report,doc said my immune system might not be able to fight off infection,I made an appontment with another doc and I see him next thursday,this time I feel very tired all the time and my stomach hurts every day,kind of scary. Hope I answered your question,sherry62

 
Old 02-25-2008, 11:18 AM   #10
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Re: Anyone have Auto Immune Hepatitus?

Hi Sherry x thank you... what kind of stomach pain do you experience if you dont mind me asking? Thanks x

 
Old 03-05-2008, 10:28 PM   #11
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Re: Anyone have Auto Immune Hepatitus?

I was diagnosed with AIH at the age of 19, which will be one year in june
around 7 months b4 i found out i had it i was always so tired and fatigue but everyone jsut thought i was working too hard.. u dont actually think of the worst
lookin back i had every symptom by the book , then when my body turned yellow all didnt seem right
first i was told it was glandular fever, than they thought perhaps hep A, than B than E .. i was tested for all the them
i had a lliver biopsy in june 2007 which finally worked out that i had AIH
since then i have been on prednisone and all the side effects that come along with it
i experienced depression cause i was so young and having to go through this was torture for me cause no one around me saw it as anything serious
no one had ever heard of it before and my doctors discourage me looking on the internet or reading about it as will upset me
i try not to tell people that i have it cause a lot of them looked at me like i was a monster, contagious and full of germs
feel free to ask me any questions on my experience cause i know with me its very hard to talk about it

 
Old 05-03-2008, 05:45 PM   #12
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Re: Anyone have Auto Immune Hepatitus?

hello,
My name is Billy and I was diagnosed with AIH at age 27. I broke out with a bad rash and flu~like symptoms. I woke up on Easter morning bright yellow and my ALT was over 3000. After a Biopsy they told me that I have the disease. I was on heavy steroids including emuran, and prednisone which worked for a while until my body rejected it. I was then put on Cellcept and the same thing occurred. Now I am on Prograff and still Prednisone and so far so good but it is the last med I can take before immediate transplant if it fails. I am on the waiting list and have been for some time. Emotionally it is extremely difficult to stay positive and upbeat when you're so tired and sore and can't do the things that you used to be able to. Seeing my little girl makes me fight even harder and I wake up everyday thankful to be around. My weight went from 175- 290 and now around 218. For anyone who reads this I am always around to talk to and help out if I can, or just be an ear to vent to. Couple side effects that can be treated but if unknown can really do damage or even fatal. Because my liver is so burned off and unrepairable it created varicys in my esophagus that burst and caused internal bleeding. Luckily I noticed the symptoms right away and they banded them during endoscopys. I have had 5 treatments and will continue every 6 months to be safe. Other things to look for is fragile bones so I recommend a bone density test yearly and get a ton of calcium, it will help make you feel better. Thats about it for now. Take care.
Billy~

 
Old 05-04-2008, 09:11 PM   #13
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Re: Anyone have Auto Immune Hepatitis?

I posted a few weeks ago and got no response so I am sorry but glad there are some people out there who have some information. I understand how your Mom feels. The fatigue is overwhelming. Does she have any other diseases. I was diagnosed with Sjogren's, copd and now the auto immune hepatitis. I see the liver specialist tomorrow but then back to the immunologist. Your right when you tell people about the hepatitis they back away....its laughable if it weren't so depressing. How did I get it? It just seems that our bodies are turning on us....With Sjogrens the white blood cells attack your glands, copd (I never smoked) now there might be a connection where your lungs do the same ( I do have asthma) also I rarely drink....Anyone who can help please do. Matt you are a good son.....
GCB in PGH

 
Old 05-06-2008, 04:58 PM   #14
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Re: Anyone have Auto Immune Hepatitus?

my doctors have told me not to visit an immunologist
in all of ur experiences has it been worth it??
it has been a year to the day when i found out i had AIH.. and i m still not feeling well... however, according to my LFT my liver is improving
but i still feel like something is not right.. firstly, i m still incredibly tired and fatigue ALL THE TIME.. walking to each of my classes at uni, which is like a 5 minute walk i m exhausted and out of the breath
i have bad stomach pains.. i still get sick everytime i eat, diahorrea (charming i know lol), i have no appetite
bascially everything that happened to me when i first got sick is coming back
oh and my hands have been SOOOOOOOOOO itchy
now i dont know if this is me thinkin the worst or if there is still something wrong
like i was reading that u can develop other diseases from the AIH and i was wondering if anyone else felt the same as me ...
ive know about it for a year but i had like 7 months b4 i found out.. so if anyone was experiencing the same htings as me a year and a half later i would like to know
thanx guys

 
Old 05-08-2008, 05:32 AM   #15
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Re: Anyone have Auto Immune Hepatitus?

Hi Jo..
It does seem you have symptoms of AIH or an autoimmune disease. The fatigue and the itching are 2 big tell tale signs as well as the stomach pains. Have they ever given you a biopsy in the past for a better diagnosis> The only other thing I can think of that gives you alot of fatigue and itching would be mono. Either way I would definitely see your doctor and have them run blood tests and if need be a biopsy. For nothing else it will give you a little piece of mind and some answers. Good luck!


Billy~

 
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