Flare up whilst on azathioprine

[Maceyy]

Hi guys I’m just after some advice on what to do!

I started azathioprine at the beginning of August after finishing prednisolone.

I was getting on ok I would get some stomach pain and diarrhoea every now and again but nothing too intense. But this past 4 days I have had terrible pains where I can’t walk, I’m vomiting and diarrhoea.

I went to a&e on Sunday where they sent me straight off with steroids after checking my temperature and heart rate. I called my ibd nurse on Monday and got told to do a stool sample and go in for a blood test which I did (my diarrhoea has stopped since then so Sod’s law I couldn’t do a stool test). The ibd nurse told me not to take the steroids yet until they have the blood and stool test results.

I know for a fact it’s a flare as I always vomit and get awful stomach pains, my bloods haven’t always shown inflammation in blood tests either so is it likely my consultant won’t take this seriously?! I was in bed for 3 days straight so something isn’t right!

Help!

[FRreedman]

You mean something wasn't right. I have had a flare whilst on Azathioprine, which settled on its own, I have also had one, again on Azathioprine,which required surgery. Your consultant should take all reports, or problems and successes, seriously, and act on them, however, don't be surprised if there is nothing done, other than note taking, this time, because as is sod's law, your problem appears to have rectified itself.

[Maceyy in reply to FRreedman]

Thank you! I’m guessing it will just get swept under the carpet this time round! At least I’m feeling more human today! I literally haven’t eaten in 4 days though only one slice of toast 😐😐

[Hidden]

Hi Maccey,

Sorry to hear about your issues with Azathioprine. I had similar problems when I got started on the drug after my diagnosis for Crohn's. This was after an initial 4wk course of steroids (Budesonide).

My symptoms developed after about ten days. No or not much diarrhoea but daily vomiting, stomach pains, strong flu symptoms, at times pains in my ankles which made it difficult to walk.

I spoke to my IBD nurse she told me I was intolerant and said to stop taking the drug.. Sth similar happened when they tried me on Mercaptopurine. Same effects if less severe as this time I was taking only half the dosis to start with.

I couldn't tolerate this drug, either. I am now waiting to discuss treatment with biologics with my consultant...

Some people do really well on the two drugs mentioned but not everyone can tolerate them. Hopefully you'll get to the bottom of what is causing your symptoms. Good luck.

[Maceyy in reply to Hidden]

Thank you! They keep saying my bloods are fine so they haven’t mentioned taking me off aza yet! These symptoms are the same symptoms I had the few months leading up to my diagnosis! So annoying it’s so new to me I’m not sure what’s normal and what’s not! (Was only diagnosed in July this year)

[afs7000]

I have been on Azathioprine for over a year now - I don't think my symptoms have ever really settled, so unsure if i'm flaring or this is the new norm - seems to get worse then better. Definitely not in remission - that being said we did stop Azathioprine for a while and I did get particularly bad - so is doing something.

[Maceyy in reply to afs7000]

I really hope it’s not the norm to have this much pain it’s landed me in bed for days and I have a child to look after! (All new to me I’m only newly diagnosed in July this year)

[afs7000 in reply to Maceyy]

Best of luck - i'm sure you will get better - get to know your IBD nurses and stay in contact with them, they are really helpful.

[scottish-lady]

I had to stop this drug suddenly as I couldn’t lay down without upper stomach pain. The blood tests showed that my Amalase levels were wayyyyyyy too high, my pancreas was suffering..I now have type two diabetes that they call steroidal diabetes however it only came about after this drug caused problem pains with my pancreas..it says on my medical records now not to be given Azathioprine at all...

[lyndylou1]

Do you follow FODMAP foods they can help reduce the toilet visits. Buscopan good for cramps. Perhaps consider a food intolerance test York Labs and i noticed another on FB . I just cut out all the foods they told me i was intolerant too and that helped a lot.dairy /gluten, wheat and peanuts for me. If vomitting that s possible allergic reaction to something eaten.