I was put on Azathioprine about a month ago as my previous message was becoming less effective. I felt pretty unwell straight away, vomiting, diarrhoea, nause headaches within a few days but didn’t connect it to the tablets, I just thought I’d picked up a stomach bug.Two weeks later my blood tests showed high liver enzymes and I was told to stop taking them, get another blood test in two weeks and if clear, start again. The test was clear, on Thursday I took 1 tablet and within 3 hrs I was throwing up, upset stomach all night. Yesterday I took one at 10 am and was not sick ( probably because I hadn’t eaten since the day before) but felt terrible, slept quite a bit. Today my pee is very dark which as I understand can be an indication of liver problems. I’m quite worried. I’ve followed all the advice about trying taking the pills at different times and it hasn’t made any difference, if I’m feeling this bad on one tablet I don’t think I’m ever going to tolerate the 3 a day that I’m supposed to build up to.
Any help/advice greatly appreciated
Jo
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joanneM200
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My own feeling is to make an appointment to see your GP and explain your reactions to this drug. He/she may feel that you need an urgent appointment with your rheumy to discuss whether azathioprine is really suitable for you. If it is making you this ill and you have noticed a definite link then I would not take any more until you make that important phone call on Monday.
Even if you only manage to get an e-consult on the phone with either or both at least it will put your mind at rest about continuing or stopping altogether, and/or finding something more suitable for you.
We are not doctors here and can only go on our own experiences, and of course everyone is different.
I did extremely well on azathioprine and it was the combined decision of my rheumy and liver specialist to take it. However, I do know that the side effects can cause liver problems in some people so I was closely monitored at the beginning, and then monthly blood tests after.
I took it for quite a few years with no noticeable side effects.
I would defo make contact Jo like other advice here, n see what the GP n rheu team say. I don’t know if it was linked for meBut when I started Aza I got really ill had to go to a&e with chest pain but it was just an infection n muscle pain - heart was fine! I had to keep stopping and starting aza with increasing prednisolone n kept feeling awful, but after 6 weeks of this I actually began to tolerate it n I’ve been on it for over a year now n it’s really helping so please don’t feel disheartened if u have t stop n start for a bit. That being said doctor monitoring is crucial / blood tests to check your liver etc! Good luck x
I couldn’t take azathioprine. Just one tablet make me really sick. I was throwing up for hours. I tried it again a couple of weeks later to make sure it wasn’t a bug and I had exactly the same reaction.
The hospital actually took some blood to find out why as a small number of people have that reaction to it.
I’m on Prograf now and have no reactions that I notice. I have been on a few over the years and azathioprine was the only one that made me really sick.
I hope you get your meds sorted out soon, best wishes .
Over the first 2 weeks it slowly got worse, then had to stop for two weeks, then started again on Thursday and was sick within hours. I couldn’t tolerate Hydroxychloroquine either, which was the first thing I was put on. I’m lucky, I have no problems with my rheumatologist or the Dept, they’ll sort me out pretty swiftly.
Hi, I don't often post on here but I read your message and thought it might be useful to make a contribution. Azathioprine is a purine drug and it can be dangerous for people who are TMPT deficient or TMPT carriers.
I enclose links to two sources of information regarding TMPT activity:
I was prescribed azathioprine 18 months ago and fortunately knew that I was a TMPT carrier so I knew that I should be prescribed a lower than normal dose but even with the lower dose experienced tachycardia and full blown rigor which lasted several hours. I refused to take another dose after the first experience and was moved on to an alternative treatment. Unfortunately for a TMPT carrier even half of the standard dose can still produce an adverse reaction.
Although some doctors are aware of the link with TMPT not all consider it necessary to check levels prior to prescribing azathioprine.
I am very autoimmune and very prone to adverse reactions so I have learned the hard way to check everything that is prescribed to me.
Thankyou, everyone has TMTP enzymes though, as I understand it, it’s only an issue if you dont have enough of them or they are homozygous.medlineplus.gov/genetics/co...
I have been having blood tests 4 weekly for several years, now fortnightly, full blood count, liver function, creative and electrolytes & CRP.
Surely the results would show up the TMTP, or would you have to be specifically looking for it?
Hi, yes unfortunately I had problems with my liver enzymes on azathioprine. Nothing else tho like urself just on blood tests that my ALT was raised. Like urself we stopped it and restarted it but again it happened again so that was it it was stopped. So then I was started on mycophenolate which after a while lost effect so I'm now on 25mgs injection methotrexate weekly.Sorry when is ur next blood test? But if u are this bad and have these side effects I'd ring rheumatologist straight away in the morning or the gp failing that. I think I wouldn't take anymore??
Ur wee could be dark just thru lack of fluids if uve not been drinking enough?
Yes, I’m phoning them tomorrow. Next blood test is on 19th October, but I can go sooner if I need to.My wee isn’t lack of fluids, I drink loads of tea and water all the time, but have deliberately drunk extra water because that was my first thought.
Just a quick update, when I phoned on Monday I I was told to stop taking the Azathioprine, bloods done again on Tuesday and results are bad so never taking that again. I’ll be seeing my consultant within the next week or so to find out what to try next.Thanks everyone for sharing your experiences.
Does anyone know if it makes a difference if it’s taken in the morning or evening? I’m on 75mg and was taking it at night but kept waking up with headaches so thought I’d try mornings instead. I’ve not had a headache plus feel a bit more alert during the day???
The leaflet I was given said if they made you feel sick to try taking with food or last thing at night, ( I tried all three, and it made no difference, But Obvs the blood tests have shown they are not for me at all) so if you find they work better if you take them in the morning then I think that’s ok, maybe talk to the rheumatology nurses? My place has a helpline, but I know not everyone or everywhere is as well supported as I am .
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