Azathioprine

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my doctors want me to start

azathioprine after a faecal calprotectin of 592, I feel really well and don't want to risk the side effects of this drug. Any one else been in this position.

 

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  • Posted

    Hey,

    I was very apprehensive about being put on azathiorprine too as I was terrified when I read the side effects. I had flu like symptoms for the first 10 days, but these soon went and I take them in the evening it's dinner so that if there are side effects I tend to sleep through them.

    I have now been on these meds for almost 3 'Botha and I feel so much better. For me - they have made a huge difference. I would suggest following your doctors recommendation and if they don't work for you then advise you need an alternative.

    Good luck

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  • Posted

    Hi, I have been on this medication for nearly 4 years and maybe just before my op. I take a maintenance dose of 50mg, prob took 100 to begin with then reduced as time has gone on. Since my op I have been in remission, having  a ct scan next week to see how things are inside then seeing my gastronenterologist in Feb when he will decide whether I stay on a small dose or stop it. I have never had any side effects from it, I am aware of the long term risks but I have to weigh them up against being sick again. To be honest I would rather take this then go back on steroids. Your high reading suggests you have serious inflammation somewhere as mine was high like that and I had an abscess which needed intravenous steroid treatment in hospital for 3 days. Unfortunately it was the precursor for me needing the op and unlike you I didn't feel good at all so knew something was wrong. Since my op all my blood tests have been really good, no sign of Crohn's being active. I take one tab before bed and have no effects that I am aware of. Please talk it through with your doctor, better still your GE, you may feel well but none of us know what is going on inside of us and your high reading is telling you something. Do you have to have any scans or investigations to see why, I would want to know the reason for prescribing the meds and also if there is something going on to warrant such a high reading. Good luck

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    • Posted

      Hi my son is currently in hospital with he's chrones waiting on a resection he also has a cyst and a stricture he's been only prednisone for the last 3 months now down to 20 mg there trying to wean him off and they have said they want to start him on this medication did they put you on any medication before or after your op ? And you you feel any better since the op ?

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    • Posted

      Hello, I was on Salofalk for a while then Prednisone which is useful in reducing inflammation but eventually after the abscess it was felt that I was in danger of a small bowel blockage so opted to remove 7cm of the terminal ileum. I do suffer with bile salts malabsorption since the op which has been hard to live with but on the whole I have been well otherwise, the Aziothioprine keeps my immune system in check. Steroids ruined my hair, took years before it came good again, moon face, hungry all the time, swollen feet and in the end I still had to have an op. Meds that work are obviously preferable to an op
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    • Posted

      Hi you would have to google it as I can't explain it, basically where my op was at the terminal ileum, after eating the bile salts irritate the bowel, they can't be absorbed and it causes diarrhoea. There is some sachet meds called Questran Lite which is supposed to help but I just don't get on with it, get heartburn and trapped wind so I take varying doses of Imodium to get through the day if I go out. It is a direct result of my op and something I wasn't prepared for or told about despite me mentioning it at every follow up appointment. You can also get it if you have your gallbladder removed. If it weren't for this I would have been very happy with the op and have had a very good 3/4 years. In some respects this is worse than my previous flare-ups and so far I haven't found anything else to help short of not eating which I have done if I have something important to go to like a concert or my recent holiday, I only had water so I wouldn't have any problems during the flight. 

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  • Posted

    I have had Crohn’s for 20 years now. Diagnosis, 1, Stricturing small bowel Crohn’s Disease with minimal colonic involvement. 2, seronegative arthropathy.

    I have been on 50 mg Azathioprine for 12 months, had clinic last Tuesday and now been put up to 75 mg, so a week has past and the thing that I have notice our feeling more tired, top of head feels sore and my diarrhea has stopped, in fact I'm now only going to the toilet once a day!

    I have another clinic appointment in 3 months, I will keep you updated.

    Thanks Twiglet,

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