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Autoimmune hepatitis disease

Posted , 63 users are following.

cathy67411
cathy67411

Has anybody else got this condition that is willing to discuss their treatment and how they are coping with this disease?

I have been living with AIH for 14 years, first diagnosed when i was 14 years old. Luckily I am fairly stable with the odd flare up now and again. I am being looked after by the Queen Elizabeth Hospital in Bham and they are brilliant. Currently im on 50mg of Azathioprine a day and its brilliant with no side effects. I have been on Prednisalone in the past and ive not got on well with it. My doc keeps mentioning the possibility of me having to go back on it in the future but I dont like the side effects.

I am a busy professional who has no time to be poorly, so fingers crossed my Azathioprine continues to do its job!!

2 likes, 120 replies

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  • chris2012
    chris2012 cathy67411

    Posted

    I also am taking azathioprine. When I was first diagnosed I was on budesonide(oral)  instead of prednisolone . I had few side effects whilst on it. Good luck on your journey.

     

  • cathy23109
    cathy23109 cathy67411

    Posted

    I was diagnosed with AIH in March 2016 and went on 60mg Prednisone and 150mg Imuran.  I am now off Prednisone, thank goodness.  The side effects of getting off Prednisone were horrible for me.  If I have to get back on it in the future, I will taper even more slowly than the doctor suggests.  It took me 5 months to get used to Imuran.  No side effects until around month 4 and that is when the nausea kicked in.  It was like morning sickness when I was pregnant.  All I have now is fatigue, not too bad, but when I am tired, I am tired.  The wonderful news is the Imuran is working.  My blood tests show I am optimum therapeutic level of Imuran.  My liver enzymes are at normal levels.  I am hoping they stay that way.  I have come to terms with taking Imuran for a while.  Sounds like if you want a good chance at remission one needs to stay on it 1/3 years. 
    • keifer13826
      keifer13826 cathy23109

      Posted

      Hi cathy Well done you !!!! off Prednisone my child was put on Prednisone 16 months ago and is still on it for his AIH.  The Doctors obviously did well diagnosing you early enough to not suffer damage.  
    • cathy23109
      cathy23109 keifer13826

      Posted

      My diagnosis was a fluke. I was diagnosed with Celiac disease in December and the doc thought the liver enzyme problem was because of Celiac but when those numbers didn't improve after going gluten free he repeated some blood work for a few days in a row and it came back positive for AIH confirmed by liver biopsy. I am very lucky I know. Right now it seems like every autoimmune disease is knocking on my door. Good luck to you and your family and stay positive even though I know how hard that is to do some days.

    • keifer13826
      keifer13826 cathy23109

      Posted

      Hi Cathy, Yes its very hard to stay positive on those HARD days and im not the one experiencing AIH i have to watch my child.  Im angry all the time and constantly have to remind myself to be nice because others dont look after my child 24/7 and cant possibly know what it is like.  My child has severe problems with his stomach bloating and the pain that goes with it puts him to tears and me too watching.  It has not been determined exactly why he suffers this problem and to this day he has found no releif.  Have you experienced this at all?
    • cathy23109
      cathy23109 keifer13826

      Posted

      I was diagnosed with Celiac disease in December 2015 and have been gluten free since. Maybe have the doctor test your child for celiac? Don't go gluten free until the test is run because once gluten is removed the test won't be accurate. My recent celiac test was negative which was awesome because that means I have been successful in being gluten free and healing is happening.

    • keifer13826
      keifer13826 cathy23109

      Posted

      they have tested him i think, he was put on a FODMAP diet for 8 weeks as well but it never changed his problem? Although his specialist did say the treatment he is on for AIH could work for IBD?
    • margie321
      margie321 keifer13826

      Posted

      Hmm stomach bloating ? And does he have nausea? Is that from the medication ..? I never had that .. I have AIH .. But My son has crohns Diagnosed at 15 , now 26.. That poor child was so sick!!! He had severe tummy aches, mornings were the worse.. They took a long time to diagnose , said it was in his head and started him on anti depressants and therapy !! .. Makes me sad to look back .. Took him to a GI specialist at Children's Hospital ..then they finally diagnosed him , he broke down in tears.. Unfortunately , this condition , AIH , is different for everyon , as I have read many stories .. But stomach bloat is a new symptom that I've heard . Good luck ..

  • Tlctisme
    Tlctisme cathy67411

    Posted

    Hi,

    I was just diagnosed with AIH last week after 6 days in hospital. I am kind of in shock and thinking I'll never live a normal life.. I M 59 and in the US and I see no support groups anywhere? I'm terrified of Prednisone,, I'm on 40 MG now and I don't want to take the Imuran at all.

     I'm scared of my future and no one knows much about this disease do they? I'm looking for good news, support and if anyone has any suggestions to get me over the initial shock. I have Hashimotos. Thyroid and they said as rAre as this is, it's very common with Hashis.. 

      Would love to hear some stories or suggestions or support in US. 

    • cathy23109
      cathy23109 Tlctisme

      Posted

      I was diagnosed with AIH March 2016.  I took 60 mg of prednisone which wasn't bad when I was taking it, it is the tapering off that is hard.  If i have to take it again, I will taper super, super slow which may take longer but I think it will make the withdrawals easier.  Something to be aware of when you start to taper.  I currently take 150mg of Imuran (Azathioprine) and after 6 months of liver enzymes fluctuating my last blood results  two weeks ago now show my liver enzymes are normal and the Imuran is at optimal theraputic level.  I couldn't ask for better news. 

      Just take it one day at a time.  It's okay and very normal to be nervous about it all, it is scary but manageable in most cases.  Just have to stay on top of it.  7 months after my AIH diagnosis and I just now feel like I am in the acceptance phase.  Yes I believe when diagnosed with something like this there is a grieving process.   I unfortunately I was also diagnosed with Celiac Disease in December so I have had a few things to grieve. Automimmune diseases are so different for everyone,

      I love this group, real people with real stories. 

    • royalty
      royalty Tlctisme

      Posted

      Hi I too have auto hep had it for 9 years I'm 59 yrs old I'm on azathrioprine 75mg and now taking 5 mg of prednisolone I have underactive thyroid n autoimmune transverse myelitis n post viral fatigue syndrome of which I've had for only 6 months the fatigue that is. Feels like 6 years 

    • dcgriffon
      dcgriffon Tlctisme

      Posted

      Hi I am in seattle USA. Doctors are pretty certain I have AIH but it's not 100%. Just saw my doc today and she said I could wait a little and watch enzymes. Saw a second opinion Dr and he is not positive either. Really scared. Liver biopsy showed drug induced hepatitis but then my enzymes started going up so they are not sure. Been waiting 8 months for diagnosis.

      Was so hopeful maybe I didn't have it. Have a glimmer of hope now but looking for people to talk to about it if I do indeed have it. It's really scary. Besides all that I really enjoyed having a beer and a glass of wine on the weekends and I haven't been able to do that for eight months. And I really miss it and wanted to find out how other people cope with that aspect of it if you were a drinker at all. Well hopefully to hear back from you or someone. It's lonely out here since I don't know of anyone else who has it.

    • amy_57955
      amy_57955 royalty

      Posted

      Your situation sounds similar to mine.  I'm 57 diagnosed 12  yrs ago.  I never had any symptoms or side affects  from the disease or meds thank goodness. Was on predinodex fit about a year then weaned.  Imuran keeps my enzymes normal .  Have hoshimotos too.   Went to a functional dr who peaches if you stay off all grains, gluten free, preservatives, sugar, processed , eat organic then the antibodies will calm down .  It may take up to 18 mths -or more but if your fatigue is bad you  might want to try it. 

    • royalty
      royalty amy_57955

      Posted

      Hi amy, my fatigue is much better now but I'm left with breath fullness I'm being monitored at mo they suspect I could have asthma. I go to my liver specialist in ten days currently I'm having bloated feeling from under my right rib right across my stomach I'm still taking 75mg imuran n pred 5mg I still suffer from nausea regularly I'm currently cutting down on sugar to see if it makes a dif to me. How's you are you in uk

    • amy_57955
      amy_57955 royalty

      Posted

      I live in Texas.  Did you ever do a liver biopsy where they told you what stage of damage?  Mine first biopsy indicated level 3.   6-7 years later a scan showed something suspicious and another biopsy was done and I was a 1-2 level. So my liver was healing.   In all these posts I don't see anyone posting this type of information.  Also by chance did you ever suffer from anxiety prior?  Even tho I wasn't diagnosed until I was in my 40's, I was told my liver had prob been attacking itself since my teens.   I had anxiety and panic attacks in childhood and some into adulthood and always wondered if this was a trigger.

    • royalty
      royalty amy_57955

      Posted

      I've only ever had one liver biopsy which indicated stage 3 too. I had awful shoulder pain when had the biopsy all through it I was calm although felt hot n couldn't breathe properly I don't know what that was about I had to have oxygen for a while I wouldn't say it was a panic attack I've never suffered anxiety and I'm 60 in couple months as I was calm until I couldn't breathe properly my consultant said I have probably been suffering from liver disease since very young . I certainly wasn't aware of it. But I did have at least 3 bouts of tonsillitis a year always on antibiotics also had glandular fever too 

    • royalty
      royalty

      Posted

      I will try n explain how I felt when I couldn't breathe properly I wasn't hyper ventilating at all and was calm but saying I'm not catching my breath how I should be able to

    • amy_57955
      amy_57955 royalty

      Posted

      Well at least you can know it's possible your liver is in better condition than what it was when you were diagnosed . 2nd biopsy confirmed that for me thank goodness. 

    • christine06248
      christine06248 Tlctisme

      Posted

      Hi,

      I'm new to this board and just read your post. I'm 53 , live in MA, newly diagnosed with aih. I also have Hashimotos and celiac. My doctor wants me to start meds. I'm nervous about doing so. 

      How are you doing now?

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