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Hi

Great to read all your stories, I am recently diagnosed with AIH and hate telling people as they think the worst. I'm based in Ireland. I am currently on steroids and weaning myself off I started 50mg of imuran and moved to 100mg but I have honestly never been so sick and was told this week to reduce back to 50mg as my professor was away I took the 50mg last night before I went to bed and within an hour I woke up really unwell and was vomiting. I am so reluctant to take them as they are making me feel so unwell I really didn't realise they would do this. I have had rheumatoid arthritis for several years and non of the other medication has made me feel this bad. I would love to discuss with anyone or here if you had any ways to get over this feeling as I trying to explain to my family smile but I am normally very strong but finding it hard this week

Thanks and great reading all your stories

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5 Replies

  • Posted

    Hi Louise, I am based in Galway and have AIH/PBC. I am weaning off budesonide but started imuran during the weaning off process about 6 wks ago. After 3 wks taking 100mg Imuran I developed the most severe headache and neck pain. I also got a rash, cough, rigor. I felt so unwell. I persevered taking them for another wk but I wanted to die with the severity of the headache so I stopped taking the Imuran (with GP approval) and within 7 hrs of the first missed dose, headache disappeared, and other symptoms resolved within next day or two. I felt normal again. Gastro has started me on Myfenax just 3days ago so will wait and see. It seems that lots of people are intolerant to Azathioprine but there are alternatives (expensive mind you!). Take care
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    • Posted

      Thanks so much. To be honest I'm not sure I'll take them tonight as not worth the pain sad and ring doctor on Monday take care too

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  • Posted

    Hi Louise, sorry to hear that you have been feeling rough on your treatment, it seems that an awful lot of people on this type of medication have really bad side effects, as you have probably read I stopped taking immunosuppressants as they made me so poorly. Can't see the point in taking tablets that make you so poorly to then weaken your system seems to me that you end up sick and vulnerable. I was told by my GP to stop taking the tablets and within 3 days my liver levels reduced from being sky high for me although I have read on this site that many patients have really high ALTS & ALPS. took me about 5 weeks to get back to feeling normal.Hope you find a solution soon at the moment I am sticking with Steroids as I don't suffer any bad effects until I can get an appointment with an Hepatologist. Good luck

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    • Posted

      Hi Barbara 

      thanks I didn't take them last night already feeling better so we will wait and see, I agree I don't see the point in taking something that makes you feel so unwell. Good luck with everything 

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    • Posted

      You know have proof that these tablets are not for you, try and see if there is a specialist in AIH or a Hepatologist that can help you with this. How high were your ALT and ALP levels last time you had your bloods done? 
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