Just about to start taking Azathioprine.
Posted , 6 users are following.
hi everyone, I was diagnosed with Crohn's in 2003 when rushed into hospital with stomach pains, which resulted in an 8 week stay and an operation to removed a 6inch infected part of my bowel. I have since then been given various drugs to maintain the Crohn's which in all I've managed to get by, but over the last year it's been getting worse. So my specialist has recommended I go on Azathioprine, after reading up the side affects it causes I am now thinking it's not a good idea to start taking them. The lowered immune system is bad enough but the chances of cancers and tumours are making me think I'll just carry on muddling by like I have done for years.
Sorry for for babbling on, I just wanted to know if anyone else has been on these long term and had any of the major side effects?
0 likes, 14 replies
jon1969 paul777
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paul777 jon1969
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IndieHannah paul777
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I have had Crohn's for about twenty five years and in the early days I was prescribed Azathioprine. I was taken off them due to sickness and severe headaches. Since then I have avoided them and steroids as they made my situation even worse.....consequently though, I have used a liquid diet every 18 months or so to quieten the Crohn's. It has worked well I think but I have had to have several surgeries along the way.
The Consultant always attempts to get me on the Immunosuppressants but I like you am terrified of the side effects.....however, twenty years on and four surgeries later I'm more terrified of the surgery!! So now I'm seriously considering taking Mercaptopurine (same as Azathioprine) and the way I see it is.....if I don't try it I'll never know if it will work for me.
With regular blood tests and monitoring I have to trust that the drug will be discontinued if it doesn't work. Likewise, if I feel that it is making my quality of life worse, then I will stop taking it.
Sometimes we have to remember that it is our body and we really do know best. The doctors do their best mostly but they are not always right. Its ok to try something new (even with risks) because it may be the very thing to make the difference!!
paul777 IndieHannah
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I have been on the Azathioprine for 4 months now and apart from a couple of bad day's they seem to be working well. But i suppose if you believe that the side effects only affect a very small amount of people you will have to put yourself in the doctor's hands to keep an eye on you and rely on them picking up any problems that the drugs cause, but I'd rather not run the risk of been one of the small number that do development major issues while on them. As some of the effects are very server. I have had several disagreements with my specialists on taking them, but they have told me not taking anything will cause me more harm so it puts people in a really hard position kn what to do. I am due to see my specialist again next Wednesday with the hope of coming off the Azathioprine and going onto metrotaxate injections that don't seem to have as severe side effects. This disease really is horrible and been in a position where the drugs they give you to combat the disease may cause you more harm than the disease it's self is just crazy.
barbara80658 paul777
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paul777 barbara80658
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barbara80658 paul777
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paul777 barbara80658
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kim46236 paul777
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i can only give you the evidence of what happend to me, but i also know some people are fine on azathioprine, i have been diganoised with crohns of the termial illeum, recently, i have a very high immune system with my white blood count at 9.7 excellent if you havent got crohns.
at first they put me on steriods for 12 weeks, which held the disease, reducing visits to the loo to 4/5 times a day, but as soon as i came of them the crohns returned. So the next solution was azathioprine with 100g taken aday, i did not understand about taken them and read the instruction as take 1 four times a day, but i should have taken them together. I intially felt very sick, but 10 days into them i was sick, i telephoned the nurse , she said i should take them together maybe at night, and sleep through the sickness, The next day i took 4 tablets, at 10pm at 1.00 i was being violently sick, with diahorrea , nearly passing out, this lasted for 6 hours, i can honestly say i have never felt so ill, in all my life. I then the next day had a rash that was red and big bruishing blotches on my legs and torso.
Previously to all this i had mouth ulcers, felt athough i had flu, aching joints and often had to have a few hours sleep through the day. After test it was found i had a very bad reaction to this drug, but some people are fine.
At present i am having metrotaxate injection which i will have for 16 weeks, and then hopefully go onto tablet form, this drug seems to lower the immune system, but in a gentler way, it still has side affects similiar to azathioprine , i still feel sick a few times a week, and tired aching joints, mouth ulcers, but the crohns seems at bay at the moment Hope you find the right treatments
paul777 kim46236
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As for me I'm really wanting to come off of them as I'm scared stiff after reading about all the side affects but also very worried if i come off them that i will go down hill again and have to deal with another set of side affects the new drug will bring.
I really hope your side affects settle down.
barbara80658 paul777
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paul777 barbara80658
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I hope they do the job for you Barbara.
barbara80658 kim46236
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adelelisa1981 paul777
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Ive joined this forum tonight as im due to start taking Azathioprine pretty soon, i am absolutely petrified of all the side affects, the cancers, and low immunity is worrying me sick... i have two young children and know i need to do whatever i can for them as well as myself, i dont want them to have a poorly mummy who is feeling sick and achy all the time...
My crohns is in my terminal illeum and is active following a sample result showing inflammation levels of 448 (normal is 1-60) so im guessing mine is pretty high.
I feel 100% fine in myself which is why im so scared to take something when i feel 'normal'
How are you now? what are the injections like? x