I Have Autoimmune Hepatitis

A Autoimmune Hepatitis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Autoimmune Hepatitis. You're not alone. 425 People

    Hit By An Express Train

    Hi, I have just joined this experience group having been diagnosed nearly a year ago with AIH.  It hit me like an express train.  I have always been super healthy, if anyone got a cold or flu, I never caught it,  I have always been a really busy on-the-go type of...
    phammans phammans
    41-45, F
    1 Response Apr 6, 2010

    It has been a hard road the past year

    and half and I feel like life has just played with me. I was diagnosed in October 2013, and started treatment with predinosone and Imuran. I had awful side effects, and stopped. And then I started back in March, and I threw up everything every day for 2 weeks until they looked...
    DyMichele DyMichele
    31-35, F
    1 Response Nov 3, 2014

    I am 27 years old I was diagnosed

    when I was 14, I have never been drunk in my life lol how sad, I also have ulcers colitis. I am on on the liver transplant list as well. I live in the Bay Area and I just try to live life every day, life is not fair and too short, I just try to be happy 😊
    ed510 ed510
    26-30, M
    1 Response Oct 20, 2014

    Learning To Live With This Disease

    In February of this year, I started to lose my appetite, I could literally go three days without eating simply because I was not feeling hungry. Soon after I got soo itchy I wanted to tear apart my skin. I never thought any of this would have anything to do with my liver. Two...
    RituDhaliwal RituDhaliwal
    26-30, F
    6 Responses Sep 13, 2013

    Don'T Worry To Much

    I was diagnosed with AIH at 5 an I am now 21. I have had it for 16 years so basically I grew up with it. I am kind of an veteran at this thing now. I live a very fulfilling life and basically always have. I haven't let AIH stop me from doing almost anything that I really wanted...
    snapbacktwister snapbacktwister
    18-21, F
    5 Responses Sep 30, 2013

    My symptoms started when I was 16.

    I began to experience widespread joint, muscle pain, and headaches. I was seen by multiple doctors who said that I was perfectly fine and just had migraines. My symptoms got worse over the years and I went to 7-8 different doctors who all said different things. Some said I had...
    eeeck eeeck
    Jul 20, 2014

    Any alternatives to the predisone

    or Imuran? I have awful side effects, there must be another way..
    DyMichele DyMichele
    31-35, F
    1 Response Nov 3, 2014

    Diagnosed With AIH

    Hello i am 9 years old I got diagnosed on 19th of june this year. My parents noticed I had yellow eyes and yellow skin so they took me to see a doctor and the doctor said it was just a virus and that it would go away in 8 weeks but to go back if it didn't improve. It didn't so...
    Chaytonhall Chaytonhall
    16-17, F
    2 Responses Aug 3, 2013

    I have a question. Not finding much on the

    internet. I have been diagnosed with AIH for 1.5 years now and on Imuran for the same length of time. Recently, I have noticed spots of discoloration on my face, mainly my upper lip. I was wondering if anyone else on Imuran has experienced this? Thanks all
    FierceDeity FierceDeity
    22-25, F
    Aug 29, 2015

    My daughter is 16 and just diagnosed with

    autoimmune hepatitis. I am an RN with a Masters degree, and so have some training in evaluating research. I have been researching like mad since the doctors started suggesting it was AIH. I suggest you look into an antioxidant diet and read Curing Courtney by Denise Otten. My...
    Alyshamom Alyshamom
    41-45, F
    5 Responses Nov 10, 2014

    I was just diagnosed with AIH

    and i already think there has to be another way. These medications are terrible. I have two children and am 22 years young. I feel so upset about putting these horrible chemicals in my body to try and help me!!! Please I am desperate for people to assist me in journey to find a...
    mnkshow mnkshow
    22-25, F
    4 Responses May 1, 2015

    I was diagnosed with AIH in September last year.

    I am doing well, medicine is controlling like it should. I have always taken care of myself, not a huge drinker ( although I'm no saint) but more of a weekend warrior. So this came as quite a shock. I didn't have any symptoms until I was at the hospital, and then I turned yellow...
    mandik1974 mandik1974
    41-45, F
    1 Response Feb 24, 2015

    I have a liver biopsy next week to confirm my

    doctor's suspicion that I have autoimmune hepatitis. I started with strep and mono at the beginning of this year along with being super nauseous and jaundiced. My liver enzymes are in the 7-800s. They went down for a bit and then back up. My eyes are still yellow and I am still...
    Singer87 Singer87
    31-35, F
    2 Responses Feb 21, 2015

    I was 7 when I found out.

    And my sister was the first to notice the symptoms. My eyes were yellow and my finger nails.. 3 days later I started to get bad cramps and when I would get in the shower I would have to get out fast because I would itch really bad.. When I went to the doctor they thought it was...
    kbrown818 kbrown818
    18-21, F
    1 Response Nov 29, 2014

    It's a hard diagnosis to swallow

    or accept, my enzymes were normal throughout my second pregnancy until after I developed preeclampsia after delivery and 6 weeks into drug therapy for preeclampsia. First, getting preeclampsia after the birth is rare then the two blood pressure meds I was on had adverse liver...
    andreab77 andreab77
    36-40, F
    1 Response Jan 5, 2015

    There Is Life And Children!!!

    I have had autoimmune hepatitis for over 18 years and im still in remission.  I found out what I had about the same time I found out I was pregnant. Back then, they did not recommend having children with this.  Boy am I glad I did not listen to that.  I have...
    hayleysmadre hayleysmadre
    46-50, F
    3 Responses Apr 22, 2010

    Update - liver AST and ALT levels up to 1061

    and 769... I wanted to get into to see a specialist in Miami but first appointment is June 2, 2015. I also wanted a fibroscan to confirm the liver biopsy showing stage 3 hepatitis and stage 3 fibro... Now, I just need a good hepatologist/GI doctor in the Tampa Bay area. The GI...
    Ursula55 Ursula55
    61-65, F
    Jan 26, 2015

    After thinking I was just tired

    and stressed from moving and selling my previous home and turning completely yellow (eyes and skin), I went to the doctor. I was hospitalized after blood work showed my liver enzymes levels to be at 1963. I had no idea I was that sick. After test after test, finally a GI...
    Zomar323 Zomar323
    46-50, F
    Feb 10, 2016

    Still Learning To Live With AIH

    I was diagnosed with AIH in February of 2013. Routine blood work showed elevated liver enzymes. At first I was in shock I think and just very scared not knowing what my future would be like. My diagnosis was confirmed after a biopsy. Lucky for me they seem to have caught it early...
    CShirk CShirk
    3 Responses Oct 20, 2013

    It's under control but I don't have time to

    waste on depression, worry or regrets.
    Pcaznew277 Pcaznew277
    Mar 11, 2016

    Three Years In...

    Hi. After reading quite a few of the stories on this site, I am very saddened by what a lot of you have to go through. I empathize with much of it myself. I am 23. I was diagnosed with AIH when I was 20 when my mother noticed I had lost weight, had black circles under my eyes...
    Redtaurus Redtaurus
    3 Responses May 11, 2011

    Hello, I am a 26 yr old female not

    yet "diagnosed" with AIH but after 15 months, 8 doctors, lots of blood work and a liver biopsy, I'm closer to a diagnosis. I've just recently seen a Hepatologist, but I've been unwell for over a year. In July 2013 out of the blue, I noticed that the whites of my eyes looked...
    niceliste niceliste
    26-30, F
    1 Response Oct 26, 2014

    Hi I was diagnosed finally last year with AiH

    after around 5 years of not knowing what was wrong. Unfortunately my liver has now damaged. I am on 50mg of azothiropine at the moment and am feeling better than I have in a long time. However every time I come off steroids things seem to get worse again. Is this normally the...
    jill2478 jill2478
    36-40, F
    4 Responses Sep 11, 2015

    I am 39 years old and mine started

    as what I thought was a bladder infection. I had dark urine and a little pain in my back. I went to the Dr. and was put on cipro. I started the antibiotic on a Wednesday and by Sunday I was jaundiced. Test were run to determine if it was a reaction to the medicine. Ultrasound...
    Prcc5255 Prcc5255
    41-45, F
    Sep 21, 2014


    I was diagnosed with auto immune hepatitis when I was 10 or 11, basically I had no symptoms. Well, looking back my parents or myself should have known something was up. I barley had any appetite and I was super skinny and I had spider veins and I wasn't jaundice really but my...
    meghanan meghanan
    22-25, F
    3 Responses Jul 22, 2013

    It's Been Almost 6 Years

    Hi everyone my name is Keiera & I'm 22 years old . I was diagnosed with Autoimmune Hepatitis at age 15. My liver was really bad & I had to be placed on a transplant list immediately , I was always sick & always sleep . I received my transplant one month after finding out I had...
    Keiera Keiera
    26-30, F
    2 Responses Sep 15, 2013

    I was 14 wen I was diagnosed I am

    now 27 I also have ulcers colitis, life gives you chula fed you just have to know how to deal with them and have the support needed.
    ed510 ed510
    26-30, M
    Oct 20, 2014

    A New Adventure Begins

    My AIH story begins just a few short weeks ago. I was furiously preparing for my husband's surprise 50th birthday party and as the day approached, the more tired I became. I chalked it up to stress and thought nothing more of it. The day of the party I awoke with serious...
    PuffyBuffy PuffyBuffy
    41-45, F
    Dec 3, 2012

    I am a 25 yr old male with AIH -

    which is rare in itself apparently. I was diagnosed with AIH when i was 17. I have been through every type of med there is to treat this. Most recently I was on 100mg of imuran and 10mg of prednisone. It was working great- my blood tests were all normal - however, my doctor's...
    hilles287 hilles287
    26-30, M
    Dec 10, 2015

    It has been a hard road the past year

    and half and I feel like life has just played with me. I was diagnosed in October 2013, and started treatment with predinosone and Imuran. I had awful side effects, and stopped. And then I started back in March, and I threw up everything every day for 2 weeks until they looked...
    DyMichele DyMichele
    31-35, F
    1 Response Nov 3, 2014

    I was diagnosed when I was sixteen back in July,

    I'm now seventeen. I have had no problems with it before or now since taking medication and it's only by chance they realised I had it.Everyone has had really rough stories about it on this but to be honest I get tired often and that's it.Also I can't drink which bothers me as I...
    gingerwinger302 gingerwinger302
    18-21, F
    Sep 18, 2014

    Aih Diagnosed 3 Years Ago And My Remission Story

    I wanted to give everyone a little bit of hope. I was diagnosed with AIH in December of 2009. It was frightful. I was on prednisone therapy for 9 months. Then I became pregnant. It was the best decision I had ever made. It also helped to put my AIH in remission. I was in...
    tasham03 tasham03
    1 Response Jun 5, 2012

    Just want to know if this AIH has affected

    working for anyone and if I may qualify for SSI. What symptoms others experience? At the moment I'm feeling fine and it's been 2-3 years. I read about others and wondering how everyone is doing.
    beezee55 beezee55
    56-60, F
    1 Response Nov 14, 2015

    Feel Achy From Cellcept?

    I have AH, just got off prednisone and on 1000 mg of Cellcept.  Just about 2 weeks after getting off prednisone, I was getting a horribly achy feeling all over my body, as if I'm coming down with the flu. Muscles just ache.  I mentioned this to my gastro and...
    8 Responses Mar 15, 2009

    Auto Immune Hepatitis

    I was just diagnosed with AIH yesterday and it devastated me. I don't understand why I have this rare disease. I was given prednisone and i just started with it today. I am really scared but thank God I can still pray. I believe in miracles so I just keep praying for it. I read a...
    Godismyhealer Godismyhealer
    2 Responses Apr 12, 2011

    31 Years......

    Hello All, I am 33 years old today and was first "diagnosed" 31 years ago when I was just 3 years old. It took months for my mother to find out what was going on inside my body. Why I was always so tired & weak and why my skin and eyes were getting yellower by the day. By the...
    Jadynsmommy Jadynsmommy
    31-35, F
    4 Responses Mar 13, 2012

    Diagnosed With Aih In November 2009

    My journey to AIH diagnosis started in June 2009.  I had just finished a triathlon, a race I had been training for over a year.  Yes, I finished it, but collapsed at the finish line.  I remember thinking that after training with a team and working with...
    Snowpea Snowpea
    36-40, F
    3 Responses Feb 21, 2010

    I was just diagnosed with AIH.

    I have not started the treatment yet. My liver enzymes were up to 915 and 610 in November and then then dropped dramatically in December to 179 and 264 . The biopsy results say I am in stage 3 fibrosis and stage 3 hepatitis. I want to get a fiberscan to see if all of my liver is...
    Ursula55 Ursula55
    61-65, F
    Jan 22, 2015

    Finding Out I Had Autoimmune Hepatitis.

    In the last few months of 2011 I couldn't barely move. I woke up one day I had a pain starting in my wrist. As the days went on the pain spread to all of my joints. I couldn't walk or move my hands it hurt so much. I didn't have insurance so I didn't go to the doctor, so I just...
    justalady07 justalady07
    22-25, F
    4 Responses May 7, 2013

    Things Are Looking Up So Don't Give Up Hope!

    It has been a while since I've written so I thought I'd just update you all and let you know that I am in a better place now. My AIH has gotten worse and I'm having to go back on the steroids but I'm finally learning to manage it a lot better. The main thing I would just like...
    epicjeangab epicjeangab
    22-25, F
    4 Responses Jan 2, 2012

    Hi everyone if you don't mind me asking I would

    really like to know your weight and how much azathioprine you are on. I want to be on as small of a does as possible and would really like to know other people's experiences. If you don't want to say your weight It would still be helpful just to know your dose. Thank you 😊
    wonderriver wonderriver
    18-21, F
    3 Responses May 21, 2015

    Autoimmune Hepatitis

    I am a 22 year old mother, and I was diagnosed with Auto Immune hep about 2 weeks ago.  I am so confused because I show no symptoms and I have not been sick at all.  I am very frustrated and confused with nobody to talk to , becaus when everybody hears "hepatitis" they freak...
    capittman22 capittman22
    6 Responses Mar 14, 2012

    19 And A Second Chance.

    I have had Aih for nearly 3 years now. The summer before my junior.year had just begun and I wanted to try for football. I was lifting weights everyday and working a job. I worked at McDonalds for the time. I never noticed any yellowing of my eyes until a lady I worked with had...
    7xmopar 7xmopar
    3 Responses Mar 26, 2013

    I was recently married

    and working at a full time job at a medical clinic. We were having our yearly wellness exam for our insurance. Not even 2 days later, I received my results through Overnight Fed-Ex. I knew that wasn't a good sign! My AST and ALT were both in the 400s. Not having any symptoms or...
    Ilovetosing626 Ilovetosing626
    26-30, F
    Aug 22, 2014

    I'm having a flare up with my disease of course

    as soon as we're about to go on vacation. someone please; what can I do about the itching???? and my ankles are swollen again. is there something I can do at home to help it? I'm seeing a doctor soon and I know they will put me on a diuretic, but in the mean time what can I do?
    ayyyyalex ayyyyalex
    16-17, F
    Jun 6, 2015

    Hey everyone! I am male,

    currently 18 years old and was diagnosed with AIH at the age of 15. At the time the diagnosis was a relief, and the pain I had been feeling for a while suddenly stopped with the meds. It was great! Since then, however, I have found myself in a very lonely world. I believe it's...
    deleted deleted
    4 Responses Mar 23, 2015

    I am a 17 year old girl from Pakistan.

    I was diagnosed with AIH in February. I was on 30mg deltacortril but my doc reduced it too quickly and my enzymes shot up to 2000. We changed my doc and now I'm on 60mg. The disease itself is not that troubling but its the side effects of the medicine that really effect me. My...
    Saharbasit Saharbasit
    18-21, F
    2 Responses Jun 27, 2015

    Was Diagnosed At 21......

    My husband and I married when I was 20 and he was in the Navy. When my husband was discharged a year later, we needed to get physicals. Everything came back clear. Less then 2 monthes later after we moved back to my husbabnd's hometown, i needed to get another physical to get...
    aday54 aday54
    26-30, F
    3 Responses Apr 23, 2011

    Has It Hit You?

    Hi my name is Monique and I have AIH they found it about a year ago and half. I started taking 50 mg prendisone and i I think 50 mg azathioprine. Horrible times my face blew up like a balloon and I got really really bad acne. As they tapered the prendisone my face got back to...
    momo10062 momo10062
    18-21, F
    4 Responses May 25, 2013

    It's Hard To Deal With .

    jalenaalways jalenaalways
    31-35, F
    7 Responses May 31, 2010

    I Have Autoimmune Hepatitis

    Hi everyone, I just wanted to share my story with the people suffering from the same disease as I do. My name is Milan, and I`m coming from Belgrade, Serbia. I`m 22 years old and currently student of Mathematics, and trying to be a boxer. I now it sounds a little weird, math and...
    MilanLjuboja MilanLjuboja
    26-30, M
    3 Responses Nov 10, 2013

    .... but I am doing alright!

    ! I was diagnosed with autoimmune hepatitis at 2 and a half years old. I am now 24. For 18 years I was on Predisone and for the past six years, I have been on Azathoprine. Unfortunately, the new medication accelerated my genetic predisposition to basal cell carcinoma. This...
    eburrowfair eburrowfair
    26-30, M
    Oct 12, 2014

    It has been a hard road the past year

    and half and I feel like life has just played with me. I was diagnosed in October 2013, and started treatment with predinosone and Imuran. I had awful side effects, and stopped. And then I started back in March, and I threw up everything every day for 2 weeks until they looked...
    DyMichele DyMichele
    31-35, F
    2 Responses Nov 3, 2014

    There Is Hope

    I was diagnosed with autoimmune hepatitis in 2004.  My liver enzyemes were around 12,000 and was very sick.  At first they thought it was my gallblatter, but a battery of tests ended with a liver biopsy that confirmed it was AIH.  I was fortunate to find...
    JoeLivingStrong JoeLivingStrong
    46-50, M
    8 Responses Sep 18, 2009

    Living In The Surreal With Cirrhosis

    I was diagnosed last month with Autoimmune Hepatitis after months of blood tests, doctor visits, CTs, ultrasounds and a liver biopsy. Anytime I share what has happened, it sounds so surreal. Thankfully God led me to an unbelievable hepatologist who has been given me amazing...
    Psalm40 Psalm40
    46-50, F
    1 Response Jul 20, 2013


    I was diagnosed with AIH in 2002, aged 52. I had the usual symptoms. tiredness, sickness, pain, itching, jaundice, and very rusty coloured urine. I went to my GP just before the jaundice appeared, and she sent me to the hospital. The doctor there wasn't very good, as he sent me...
    brenywave brenywave
    2 Responses Mar 25, 2012

    Just got my first positive aih blood test

    yesterday. Age 40 female.
    nrskris10 nrskris10
    41-45, F
    1 Response Sep 26, 2014
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