Azathioprine Experiences

[Vixx]

Hi
First post - and newby to Crohn's. I've had a less than ideal start that's a long story involving not being seen after my colonoscopy for almost 7 weeks and just being in so much pain and unable to get any help from my local hospital as they never answered calls.

Anyway, diagnosed now and been on Budesonide for 8 weeks. I started 125mg of Azothioprine on Saturday and since then I've had bright yellow wee and blotchy legs. I've also had very painful muscles in my left leg that just hurt whilst doing absolutely nothing. I'm at my wits ends and no idea if this is serious or not. 111 had no idea, the IBD nurses don't call back (left email and message) and the GP said stop taking til IBD tell you it's okay to - any thoughts?????

 

[valleysangel92]

Hello and welcome to the forum

I was on azathioprine for a short while about 6 years ago. Yellow urine is actually a very common side effect and usually nothing to worry about, blotchy skin can be a sign of a small allergic reaction though, so I would agree with your GP that it would be wise to get an opinion from someone on the gastro team. Sometimes the only way to really reach them is to try and call your consultants secretary, if you don't know the exact number, call the hospital switch board and asked to be connected to the office of your doctor. In the mean time, a pharmacist may be able to tell you what side effects are "normal" and what are more concerning.

If while you are waiting your symptoms become really severe and you feel like you can't wait for them to contact you please don't hesitate to go to A&E, especially if your pain is unbearable or you start vomiting and can't keep water down.

 

[Vixx]

Thanks for that - the IBD nurses are not easily contactable so my GP eventually managed to sort it out for me - my hospital visits have been chaotic and the whole experience of being diagnosed and told over the phone that I had Crohn's has been horrific, so any advice is appreciated!

 

[valleysangel92]

Thanks for that - the IBD nurses are not easily contactable so my GP eventually managed to sort it out for me - my hospital visits have been chaotic and the whole experience of being diagnosed and told over the phone that I had Crohn's has been horrific, so any advise is appreciated!

Unfortunately responsiveness does vary between hospitals but I do know a lot of services have been disrupted due to Covid-19 , my hospital shut down the IBD line for a few months because the IBD nurses had returned to the wards so you might find that when things eventually calm down it will be easier to access care.

My own experience of diagnosis was pretty bad too, it took nearly 5 years and then I had steroids and went straight to surgery, my consultant then proceeded to ignore me for another year until I managed to switch specialist. Sometimes it is a case of the doctor just not being the best fit for you. If you have any questions please do feel free to ask, you can send me a message if you'd rather talk more privately.

 

[eleanor_rigby]

Hello, I’ve been on azathioprine for 5 years and one thing that struck me in your post is that it reads like you started on 125mg? That seems to me like a very high dose to start on. I only started on 25mg and then worked up to stronger doses only as my body got used to it, and checking no adverse events with weekly blood tests (U+E, LFT, FBC) before increasing. Have you done this? Your body needs time to build up to this new drug.

 

[Lam123]

Hi! I took this med awhile back, it worked well for me and gave me remission for almost 10 years. One thing I do remember is the yellow pee and it did take a little while to fully work, so try and be patient and maybe symptoms will calm down.