1. Community
  2. Bones, joints and muscles
  3. Azathioprine

New to the medication

Posted , 3 users are following.

louise54914
louise54914

Hi

Click here to view image

Thanks and great reading all your stories

0 likes, 5 replies

5 Replies

  • jackie21221
    jackie21221 louise54914

    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
  • barbara02082
    barbara02082 louise54914

    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

    • louise54914
      louise54914 barbara02082

      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 

    • barbara02082
      barbara02082 louise54914

      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? 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.