I was diagnosed with UC in 2001 and have been taking Azathioprine ever since.

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I feel that 13 years is a long time to be taking Aza and am thinking very seriously about withdrawing from the drug. My doctor tells me that if I do I will be playing with fire. The drug has given me a better quality of life while on it but as I become older (I'm 56) I'm concerned that I'll develop bone marrow or skin cancer. It's quite frightening to think about it but it's a toss up between my UC issues returning or staying on Aza. Has anyone actually tried this after long term use of Aza?

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6 Replies

  • Posted

    Hi Bettie, i started taking these 3 weeks ago and i haven't noticed any change as yet, i was told it could take 3 to 4 months to kick in tho. I have been very against taking these for over a year now as i was told by my surgeon just before he retired that all the new young doctors are very quick to hand these drugs out but i should be aware of the serious side affects as he thought that as soon as i was referred to his replacement thats what I'd end up on. I did do lots of research which scared the life out of me but the problems that will arise if i don't take them maybe just as bad. But i have spoken to several doctor's that are not connected to my hospital and they have only had good things to say about the drug. I am having weekly blood tests at the moment but they will be changing to monthly soon and im told if anything serious starts to happen signs will show in my blood results, but it doesn't make you feel any better about the chances hey!!! The one thing all of the doctor's have told me is that nobody should be on the drug for more than 6 to  7 years. They were all very clear on that.  
    • Posted

      Hi Paul, I wasn't aware of this! Doctors have a duty of care to inform their patients of the dangers. I've done a lot of research and have yet to discover this. I must say that since using Aza I haven't experienced any of the side effects except that my white blood cells are low. Knowing this, I've had no problems whatsoever with my health. My recent colonoscopy was excellent with a microscopically normal lining of bowel. The doctor told me to just keep doing what I'm doing. No meat, dairy or gluten. I still drink coffee and have the occasional glass of red wine. I'm prepared to even stop the coffee and wine if I have the courage to withdraw from the Aza. An holistic medical doctor once told me that to stop taking the Aza I would need to do a liver cleanse every 3 months until I release up to two thousand gall stones. Apparently disease comes our way when our liver is congested with built up toxins over many years.  I have done many but it must be consistent over six months. My family commitments get in the way of my progress. I have 3 kids. Now that they're older I think I can try again. I recently came across a book you might be interested in, Self Healing Colitis & Crohns by David Klein. I'm seriously thinking of started his 
    • Posted

      Hi Bettie, that's great news about your last colonoscopy and things are going well for you. I suppose every body has there own symptoms and ways of coping with U/C. People's life styles also have a massive part on how we are, mine is long days where i rarely get chance to eat much and when i do it's not great food & now after getting by after 11years its starting to take its tole. Every doctor has there own advice to give which doesn't always fit with everyone but i suppose you can only do what you feel happy with.  I know i won't stay on these tablets long term and i will be pestering my specialist's to be checking on my all the time and be trying to get them to switch me on to something else with less worrying side affects. One of my doctor's told me they have a new drug just come out that is supposed to be better than azathioprine but they won't let me on it unless I've tried the azathioprine first. 
    • Posted

      I think you may be referring to Vedolizumab. It's better than Aza because it targets a specific immune response instead of suppressing the body's entire immune system so there is less damage. I've become complacent over the years with my condition by just relying on the drug so I think it's time to re-evaluate my treatment. You seem to be on the right track Paul so I wish you well and hope you go into remission very soon.  
    • Posted

      Thanks Bettie, it's nice to be able to talk to other people that know what your going through. Also thanks for the name of that drug because they weren't to keen on letting me know what it was. I suppose it cost's them to much. 
  • Posted

    Hi Bettie. This are questions I have started asking myself, too. I have been on azathioprine for six weeks now whilst taking cyclosporine to bring a major flare up under control. I am feeling quite grim from the cyclosporine and had to reduce the dose from toxicity as my weight plummeted and then I revisited the hospital because of a bad virus (picked up from my 19 month old daughter :-) ) I could fight. Better now and I only have another six weeks of it, but I would love to know whether I can have a normal life on azathioprine once it has kicked in (my test results suggest a high level of the required enzyme) and whether it means the chances of a flare up goes away. Is it worth if the chances of something nastier comes along and also, does anyone know how long on average it takes to get working? I would love to ditch the steroids and cyclosporine right now.

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