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Original poster

Has anybody taken Azathioprine?

24 replies

Eve81 · 02/09/2021 18:27

Hi,

I have crowns disease and have just been started on 150mg of azathioprine.

Today is the first day I’ve taken it and I feel absolutely horrible. I have had constant nausea, thrown up twice, absolutely exhausted and just feel odd.

Has anybody else felt like this when starting Azathioprine? Could anybody tell me how long the side effects lasted for them and if they were this bad?

I have a 15 month old and I have struggled to look after him today. I feel so bad for him, he’s been wondering around playing, watching film after film because I physically cannot pull myself together without throwing up.

OP posts:

Original poster

Eve81 · 02/09/2021 18:28

God, should proof read before submitting. That was meant to read Crohn’s disease.

OP posts:

Cillmantain · 02/09/2021 18:32

I am taking it for an auto immune disorder.
I was very nauseated initially but it settled after about a week.
I never vomited.
Unfortunately it's a very common side effect.
Good luck with it.

endofthelinefinally · 02/09/2021 18:32

Yes. I had to stop it in the end. I gave it 3 weeks and I was still having awful headache and throwing up.
A friend takes it and she is absolutely fine on it. I guess it is different for everyone.
Do feed back to your doctor though. They need to know how you are getting on.

Petrarkanian · 02/09/2021 18:34

I went onto Mercaptopurine as the Azo made me bone tired all day.
Ask to try 6mp if you carry on feeling like that.
You could also try taking it at bedtime or before once you work out how long it takes to make you feel bad.

ElleOhWell · 02/09/2021 18:36

Yes, I’ve been prescribed it in the past but sadly couldn’t tolerate it. Crohn’s here too.

I lasted about two weeks before it knocked me for six and I felt like I’d got food poisoning and flu all rolled into one. I had to stop taking it sadly as it made me incredibly sick.

I’m sorry this might not be what you wanted to hear but that’s my experience with it, I felt bloody awful.

I do know others who have taken it, started off a bit ropy and started to improve though and it has had a positive effect on their lives, unfortunately not for me though.

Do you have an IBD nurse you can speak to?

Justsaying22 · 02/09/2021 18:36

I am on azathioprine for an autoimmune disease. I had some nausea to start but that settled after a few weeks, however, I wasn’t actually sick. Hope you feel better soon or maybe speak to your specialist about alternatives. I took cellcept last year and was really sick on that and so came off it.

purplegirl13 · 02/09/2021 18:37

I've been on it for 10yrs and suffered dreadfully the first couple of weeks as my body got used to it. If l recall correctly l started on a lower dose and then increased after a few weeks.

I suffered with nausea, dizziness and vomiting.

ElleOhWell · 02/09/2021 18:37

I was prescribed 6MP afterwards but was exactly the same sadly.

I’m now prescribed IV infusions.

dodgybumgirl · 02/09/2021 18:37

I didn't get on with it either - (UC here). Horrible headache and very nauseous like a pp. I moved on to 6-mercaptopurine which I tolerated much better (and have been on for nearly 10 years now).

purplegirl13 · 02/09/2021 18:38

If you've got an ibd nurse I'd suggest you let them know you're suffering with side effects.

Original poster

Eve81 · 02/09/2021 18:50

Thank you so much for the replies, I didn’t expect this many. Seems like a mixed bag overall with side effects. Id really like to give them a week to see if it calms down but flipping heck, I feel so bad that’s a big stretch. I’m also exhausted which is obviously not compatible with a young toddler. I don’t know what I was expecting, I really thought I’d just take them and feel better in a couple of months.

I have got an IBD nurse and I am under consultant so I can speak with him but just feel embarrassed at potentially quitting after 12 hours (I would love to never take another one).

OP posts:

beepdotbeep · 02/09/2021 18:54

Might be worth asking if you can start on 50mg for a week, then 100mg and then 150mg. I've taken doses up to 250mg before, but always gone up in steps as each increase caused nausea for a while.

There's another medication called mercaptopurine, which is a version of azothioprine but like one step of bodies processing of it already done - I've had much more success with that than I ever did on aza, even at the higher doses. So might be worth asking about that if you really can't settle with it.

Hope you start to feel better soon.

purplegirl13 · 02/09/2021 18:55

I may well be making this up but I'm sure l read it might be better tolerated in the evening after food. For some reason I've always taken aza in the evenings and feel there must have been a reason for this. I take other meds during the day

Zebee · 02/09/2021 19:22

Agree with taking in the evening with food. DS on it for Crohn’s and that is what he has been advised.

UndeadSlut · 02/09/2021 19:30

DP is on it for his Crohn's, he takes 75mg in the morning after tea and biscuit, and 50mg in the evening after dinner. We weren't together when he first started taking it so I don't know what his side effects were, but he doesn't have any with the dosage split like this.

Original poster

Eve81 · 02/09/2021 19:50

Thank you so much for suggestions. I’m going to give it until Monday but try taking it in the evening. I’ve just thrown up again so I’m really not hopeful that it will help but at least I can say I’ve tried.

I feel so much better after reading these posts, I don’t personally know anybody who has taken them so I feel very lonely with it all right now. It’s very reassuring to know I can try an alternative also. I suppose I just feel like a pain because for the last couple of months everybody has been going on as if it’s a miracle drug and I’m about to say it’s crap.

OP posts:

BobbinThreadbare123 · 02/09/2021 19:50

I've taken it for Crohn's. I puked and puked and had to switch to mercaptopurine after about 6 months. I had a lot of pancreatitis symptoms too. There is an enzyme called TPMT that converts the azathioprine to 6mp (mercaptopurine) in your body and my consultant said that it's this conversion that causes the vomiting etc. Mercaptopurine tablets skip the step so no vomiting, usually!

ElleOhWell · 02/09/2021 19:54

@Eve81

Don’t feel that you’re letting anyone down if it doesn’t work for you. Give it a bit more time but don’t feel guilty if it’s doesn’t work out.

This is your medicine pathway, one which most of us follow and if one treatment doesn’t work out, it’s on to the next until it does (hopefully) start to work its magic.

DevilFinger · 02/09/2021 19:57

Did you have blood tests prior to see if you can process it? I take it in the evening now, just before bed so hopefully sleep the sickness off, I started on 50mg then 100, then 150

I still feel sick some mornings but take an Ondansetron which sorts it

8MinutesToSunrise · 02/09/2021 20:00

It made me feel awfully nauseous in the beginning. I sipped on super strength ginger tea all day and took it before bed at night to try and sleep through the worst of it. The worst of the nausea was over after a week or so for me though I ended up being sensitive to it and had to stop after a couple of months. Hang in there

FlorencenotRatchet · 02/09/2021 20:11

Hi Op
I take it for ulcerative Colitis. Originally started on 100mg which made me really nauseous. Dose was reduced to 75mg which is working well for me.

Carameljack · 02/09/2021 20:14

I’m only on 50mg (also crohns) but I felt nauseous the first few weeks. It did settle and I have to say it’s kept me pretty much symptom free. I’d try and speak to your IBD nurse and ask about splitting the dose. If you can manage the first few weeks it might really be worth it and do wonders.

LoveFall · 02/09/2021 20:18

I took it for ulcerative colitis. It helped my disease but I did not like taking it. Like many others, I felt nauseous. My liver function fell a little. I stopped it. I am now on Entyvio and doing great on it.

Bagelsandbrie · 02/09/2021 20:27

My mum had Crohn’s disease (diagnosed with it at 13 and had it very severely, had several major bowel surgeries for blockages etc as a teen). She tried az and couldn’t get on with it at all, she said she had never felt so ill. She actually ended up refusing all medication except steroids and painkillers in the end (tramadol) as she said everything else just gave her side effects and like you she had a child to care for (me!) and she couldn’t afford to faff about. The consultants used to get really cross with her and tell her she shouldn’t take steroids etc long term but she just ignored them and did what suited her. She died aged 70 - (from copd and liver cancer, she used to drink a lot…!) I think at the end of the day you have to try things but don’t put yourself through hell, there are lots of things you can try yet.

I have lupus and az is one of the treatments for that too and many people say it’s great but equally there are lots that can’t cope with the side effects.

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