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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

120 Replies

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  • maria64621
    maria64621 cathy67411

    Posted

    Hi Cathy, I was diagnosed with Auto Immune Hepatitis in March2018, so I am fairly new to this things. At present They are still trying to decrease the inflammation of my liver with variable doses of Prednisolone and Azathioprine. I down to 20mg Prednisolone but the doctor has upped the Azathioprine to 150 m daily in an push to stabilise the liver. I am quite worried about it, but I have to try it. So far I have tolerated the 100mg ok although my hair is falling out alarmingly. 

    My question is : do I have to take all the tablets together in one go ? can I split the 150mg in two goes daily , combined with the Prednisolone ? Pharmacist and gastro doctor have different ideas... Help !

  • marieyeo
    marieyeo cathy67411

    Posted

    I am a 29 female from england, I was diagnosed with AIH around 2 years ago, after routine blood tests showed my ALT of 1700. after a biopsy I was diagnosed and started treat of azathioprine and prednisolone. I have tried twice now to be tapered off the prednisilone but no joy, my levels keep rising and are currently 92! Has anyone else had this?

    I am wait to find out what the next step is in order to get my levels back under control. I am scared!

    • janinenz
      janinenz marieyeo

      Posted

      when you say your levels at 92, do you mean the amount of pred you are on or you blood work?

  • april1956
    april1956 cathy67411

    Posted

    hi there i have had aih for quite awhile as well. i am also on imuran 50 mg and never had any issues fora long time.

    THE LAST 2 years i have had a couple of blood clots in my liver and my DR SAID IT IS FROM CIRROSIS that i got before being diagnosed and on the meds.

    Recently i have been getting spiderveins on my arms, neck and face. just hate that. My Dr is not sure if its from my disease or the imuran. My Dr is a young Dr so not as confident with him as I was with my older Drs.

  • alex85687
    alex85687 cathy67411

    Posted

    Hello all,

    My gastroenterologist suspects that I have auto-immune hepatitis. I have recently had an MRI on my liver and there is some mild inflammation around the bile ducts. I am due to go for a biopsy on my liver to confirm. My liver enzyme levels are not very high (ALT levels around the 200-400 range) and have been that way for around 2 years now. I do not display any symptoms of AIH whatsoever. I was diagnosed with mild Crohns disease in 2019 and take a very small dose of mesalazine.

    Because of the nature of my job I would not be able to take prednisone. My question is, since my condition appears to be so mild, would I be able to take just the maintenance dose of azathioprine from the start? Does anyone have any info on this?

    many thanks.

  • Ana72
    Ana72 cathy67411

    Posted

    hi all,

    I have been diagnosed with aih. I was on steroids & aza, but had psychosis, very bad reaction. I am now on mycophenolate mofetil. 1500 a day. they have now diagnosed me hypothyroidism & want me to go on levothyroxine. but very scared 😱 as it can cause liver injury. especially iv got cirrhosis. iv never drank btw, app had for 10yrs & didn't know.

    blessings Ana x

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