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To stop azathioprine or not

Hi,
I am new to the forum. I have been on azathioprine for 6 years since emergency hemicolectomy and ileostomy surgery for a fistulizing absess caused by a Crohns flair during pregnancy (the ileostomy was reversed 4 mos later and the bowel resected). I have been in remission ever since.

However, since being on the aza, I get frequent infections (coughs and colds) which completely floor me. A slight cold which my family members hardly notice wipes me out for a week or two each time with nausea, diarrhoea, fatigue, brain fog and weakness until the diarrhoea clears up. It is taking half my life away and making me non-functional for these times, in between which I am better again, only to come down with something else a few weeks later and go through it all again. Has anyone else experienced this at all? I have read of others' experiences with Aza side-effects, but never the connection with infection.

When I questioned the doctors about it 3 years ago, I thought I might be having 'mini-flares', but it was confirmed through colonoscopy and bloodwork that it was not active Crohns. They thought the diarrhoea might just be my body's way of processing infection post-surgery, or bile acid malabsorption. Infact, they ended up increasing my dose of Aza from 75 mg to 125mg, as they found my levels of the therapeutic enzyme were too low (I have low TPMT enzyme so was put on low dose of aza initially). I am still not sure to this day whether the Aza has done anything at all for my Crohns or whether I would have been in remission anyway from the surgery. On my last bloods, my white cells were found to be low, which they have never been before, and am awaiting results of follow-up bloods.

I am balancing whether or not to come off the aza and potentially risk another flare-up of the Crohns and would appreciate any advice from anyone else with experience. Many thanks I advance.

  1. I wish I could give you a concrete answer, but it's one of those situations in which you will not know unless you do it. It's definitely a worry, and then that worry might even be a factor in a flare coming! So much confusion!!


    Yes, it's actually pretty common for Aza to mean you catch everything going, and that it's worse for you, because your immune system is being suppressed by the medication! Staying away from people that had any sort of bug was one of the first warnings I had from my IBD team when I started Aza (along with the sunlight exposure).


    ~ Sahara (Team member)

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