Hi does anyone have any experience of Azathioprine? My registar wants me to go in it, but I'm reluctant. I've been following a strict diet which excludes gluten, potatoes and cow diary and minimises sugar. For months I've felt good, really good....but work has been really stressful and I got run down and caught a cold. Since then the fatigue is crippling and my brain refuses to work! I'm absolutely gutted and feel useless. The kids watch TV while I sleep and my amazing husband is keeping the house running!

Should I just take this drug; will it take me back to the active mum, half marathon runner, career girl and active wife I used to be? Even half way back would be nice!

Damn you Lupus!


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  • Hi I have been on this drug since March, don't think I can remember what I was given it for, well anyway hasn't made much of a difference to my day to day and will mention to the doctor next month when I go. But might work differently for you. Good luck.

    Xx Uzi xx

  • Hi, I've been on AZT for 6 months, the dose having recently been doubled to 200mg a day. Like you I prevaricated about taking it, but in desperation, as quinoric et al was not working I started to take 100mg day which helped but not greatly, so over a period of two months and innumerable blood tests the dose has been doubled. The flares have stopped, I'm sleeping well, and feel more like my old self thank goodness, I can even work for two or three days of 10 hours or so. I know each drug can affect each of us differently, but in my case it worked so far!! I sincerely wish you the bet of luck with it and hop that it's effect is as good for you as for me.

    Take care, best of luck

  • Me due Tom at rhumo to be put on this any advise thank you.

  • hi i was on AZT since march and was feeling really tired on it but it was helping with the pain and fog but i had to go for blood test 2 weeks ago and i had to show them my mouth as it was very painful and red and had broke out in ulcers the nurse told me to phone my rhumy nurse and she told me to stop taking the AZT for a few day and then start taking them every second day. i phoned my own doctor on tuesday and he has told me NOT to take anymore my mouth is still sore and i'v been off work since wednesday as i have no energy because my immune system has been so low with AZT to fight the infection in my mouth. hope this helps xx

  • Hi,

    Yes the Azi has helped me get back to a functioning ill person :-) some of us get back to what we used to be and others, like myself, are just ghosts of our past selves, coming to terms with our new ones. Never lose hope but don't expect miracles. Try it, if it doesn't help, then come off - after consulting with your doctor of course. Good luck :-)

  • Hi I've been on 175mg day for a year and feel much more like my old self, but when I first went on it my daughter nicknamed me the cat because I slept for the first two weeks until my body got used to it, so it might take some time. Anything that helps you back to normality is worth a try, good luck x

  • Hi, I've been on Aza for approx 18 months, some nausea and sickness as the meds were gradually increased over weeks and in line with blood testing. Sadly, I cant say I've had great results, I really hoped it would enable me to return to my former self, like yourself a busy career woman, mother and partner who ran the house. Whilst the consultant is happy with the results on bloods i.e. lupus markers have improved my symptoms on a daily basis have not, however, I'm told this is due to the progression of lupus and my rheumy suggests I make my expectations realistic, ie a chronic illness will not allow us to live our lives as we did before. A big blow and a tough one to get used to but I'm slowly coming around to the fact that my life has changed immeasurably.

    All the best, hope you have good results but do remember to look after yourself and rest as you need to.


  • I have been on it for years, it is my only lupus drug now. I am completely used to it now I have blood tests every 3 months to see if my body is not getting any harm from it. My SLE is under control when I am on it. No one can decide for you whether to take any drug but Azathioprine is very helpful for many people with lupus and commonly prescribed for it.

  • Hi Everyone thank you so much for your comments. I've been signed off work for a couple of weeks so hoping for some space to rest and have a good think! Hoping you are you feeling better and stronger soon!


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