Just about to start taking Azathioprine.

Bones, joints and muscles
1

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?

2

Hi Paul thank you for starting this thread this is why I joined this forum recently. I have had crohns for nearly 20 years and I have always taken mesalazine but recently I have struggled with my illness pain wise obliviously cannot take steroids long term I had a colonoscopy which showed I had a 12 inch narrowing . My specialist has put me on azathioprine I have met a surgeon but he explains there are always complications if you have already been opened up before and I should see how the medication goes he says I look well I'm having no time off work not in pain at the moment etc etc but is happy to operate in the future if I want him to . I agree the side effects don't make good reading I haven't had any ill effects of the lowered immune issues and believe me everyone I work with has colds at the moment lol. My main side effect is my legs and particully my feet are so sore and tired I'm also very tired even more than normal with the crohns on the positive my stomach is generally great !!! 😊 if  you don't take the azathioprine the only alternative I'm told is surgery its basicly the end of the road so what do we do ? I'm waiting to see a specialist ref my feet to see if it's the tablets or something else the Dr did say what she thought it was but you are more likely to have it if you have crohns . Just to add if you have the operation you normally are advised to take azathioprine afterwards anyway !!!! 😪 the reason I'm concerned about the side affects was that years after taking steroids I had major issues with My right shoulder the specialist at the time thought I would have to have a full shoulder replacement thankfully I didn't but I still have problems with it even now I was told my problems were due to me taking steroids years earlier I don't want someone saying in ten years time you cannot because of those azathioprine you took years ago !!!!! Jon 

3

Hi Jon, your story sounds very similar to mine. I have always managed to get by with using Loperamide which is like an immodeum,yes I I have my bad days but I try and manage it but not eating things I know won't go down well. But I'm now been told I shouldn't be using these and there not good for me and I need to be on the Azathioprine. I read so much about the side effects it put me off, so I've been refusing to go on them for the last 9 months. I could probably get on with the lowered immune system but the chances of skin cancer and lymph gland cancer and the fact they don't do any checks to see if these things are growing because of these tablets is a risk I'm not happy taking. I'm now been told taking nothing runs a higher risk of major complications than taking Azathioprine. So it feels like I'm screwed if I do and screwed if don't.

4

hi paul,

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

5

Hi kim, I've been on the Azathioprine for about 3 months now and fortunately for me the tablets seem to be doing the trick as now i am back down to going to the toilet once a day. But i am becoming increasingly worried about the side affects. Over the last 4 to 6 weeks almost all of my joints hurt to the point where my feet hurt while i walk, i did do lots of reading up on Azathioprine before taking it and that seemed to pop up quite alot as well as various other symptoms, i also feel tired most of the time which i believe can also be conected. I was told by my specialist at the hospital that they would be willing to take me off of these tablets as i was very anti them in another 3 months and they would put me on metrotaxate injections for 2 years, but they wanted to make sure that the Azathioprine worked on me incase they needed to put me back on them after the metrotaxate. In all aspects of the crohns I'm feeling great but I'm not sure i can put up with the aches and pains they are casing. I'm actually booked in to see my GP today to talk about this as I'm still waiting on an appointment at the hospital. It really does feel your screwed if you stay on them and screwed if you come off. I feel really sorry for you that they caused you lots of issues, it really odd how different ppl react to these in such a variety of ways.

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.

6

Hi Paul

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!!

7

Hi Paul I am in the same boat as you at the moment .going on azatheopthine on Monday and scared to death of what I've read about it good luck .

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Hiya Barbara, I've been on Azathioprine for about 4 months and they seemed to have settled things down but i do still have flare ups. I'm hoping that when i see my specialist next week they can take me off them and let me start having the metrotaxate injections. I really don't like the idea that there are so many side affects to the Azathioprine that you don't know are affecting you until it's a little late.

I hope they do the job for you Barbara.

9

Hiya Hannah,

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.

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Hi Paul when you go on azapiroethine does it make you normal again like steroids do ?no diareah and no flares.as I am going on it on Monday and would love to know .babz.

11

That is awful Kim.sorry to hear you have been so ill.i mean how can you sleep through sickness .do hope you find the right treatment soon .xx

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Hiya Barbara, the Azathioprine has made things so much better for me, the diarrhea has stopped and I'm only going to the toilet once a day instead of 4 or 5. But i do still have the odd bad day when i eat something i know i can't handle. I would be happy to stay on them if i didn't know how bad some of the side effects can be. Even tho they only affect very few i don't like the idea that they can lower your immune system leaving your body vulnerable to illnesses been one of the milder side effects to one of the worst been tumours and cancers.

13

Thankyou Paul.good luck on the metrotaxate.i know how you must feel starting over on another drug and wondering what side effects are.but there again if you don't try you'll never know.let me know how you go on

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Will do, thank you Barbara (0:

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Hi Paul

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