Crohn's and Colitis Support
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Experiences of Mercaptopurine

Hi there,

I would be grateful to hear of anyone's experiences of Mecaptopurine because I've been prescribed it today. I had a course of steroids in August/September but it's not put me into remission of my UC. I've now got take a longer and stronger course of steroids along with the Mercaptopurine and I'm a bit nervous as to how I'll be. I'm starting a new job next week and so I'm really hoping for no side effects!!

Thanks in advance, Claire

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Hi Claire, I've been on a very long course of steroids - 18 months - and have recently had Azathioprine (similar to Mercaptopurine) added. I'm on Infliximab as well. I have had no adverse reaction to the Aza after 7 weeks on it, luckily. Regular blood tests are important and I expect you are having these. I do hope you find it works, but it can take 12 weeks to improve symptoms. Nothing is working for me......😔

Best wishes, Val

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Thank you for your reply Val, I've only been on the Mercaptopurine for 5 days so far, not been feeling at all well today but you ever know whether it's just the UC or side effects?! My Consultant did tell me that if I can't tolerate Mercapto then we'll try Azathioprine instead. I'm also on 40mg Prednisolone a day aswell so I'm hopeful for remission. I appreciate the Mercapto takes a while to work though. I'm having weekly blood tests for now, presume once I can tolerate the medication this will reduce?

Claire

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I have had weekly bloods for 6 weeks, and now tests are fortnightly. Assuming all is well, I guess it will be less frequent after a while. That's if we don't decide to give up and go for surgery! Looking quite likely. Anyway, hope your meds help you in due course.

Val

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I have been on mercaptupurine for a year and it took a while 6-8 weeks but then I went into remission I have to watch my diet less fibre more fat so the weight pulled back on.but I feel healthy albeit frumpy with the weight.I have one flare up when I foolishly dehydrated. Never do that it's a silly thing to do.back to 2 litres a day of fluid and all is well.keep taking them and good luck.

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Thank you for your response - were you like me with Prednisolone at the same type as the Mercapto?

Did you have any side effects?

Have you been given any idea of how long you'll be on the Mercapto? I know from previous tries that I won't be on the steroids long-term, I think they're just an emergency thing?

Thanks for your help, Claire

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I am only on mercaptupurine nothing else.I had steroids in the begining but not now.side affects dry skin.and keep out of the sun.wear factor 50 + when on holiday.

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Think I will be on them for life never actually asked to be honest. Just happy to have my life back.oh forgot to mention I get very bad colds had one for 5 weeks last time.immune system not very good keep away from the ill.I work in care and I manage.just.lol

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Thank you for your tips - I work in a Hospital ha ha!!! Can't stay away from the ill !!

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