Azathioprine : Hi I have been diagnosed... - Crohn's and Colit...

Crohn's and Colitis Support
3,089 members1,010 posts

Azathioprine

Horseyrider1
Horseyrider1

Hi I have been diagnosed with microscopic colitis I was was put on steriods for a year but these didn't help, I just running to toilet especially in a morning I can go 5.6 times in the first hour on getting out of bed, Now my consultant has decided to try me on Azathioprine starting on 50mg 2wks then 50mg 2 weeks other than me feeling very anxious and tired nothing seems to of helped me yet so now it's been decided to start me on 150mg, Omg. Anybody out there who take this medication and has it helped? I am very worried at the moment with this coronavirus as this medication lowers the immune stytem alot. Looking forward to hearing from you.

16 Replies
oldestnewest

I have been on 150 mg per day for over 15 years, and for the most part have been in remission for the whole time. I now suffer with c rather than d, but that's for other reasons (opiates for another unrelated illness). There are some, like me, who swear by these pills, there are others who swear at them. Take care.

I have been on azathioprine for around 18 months - although it has helped I do still have ongoing inflammation.

Re your start, this based on my experience does not seem correct, the dose should be around 2.5mg (I think) per Kg of body mass.

150mg I guess seems more reasonable but it takes around 6 weeks to get the TGN level into the therapeutic zone - have you had regular bloods to check for liver function?

I started on 125mg then 150mg as I was not therapeutic but at this point my liver suffered so was dropped to 37.5mg with allopurinol, which in combination increases bioavailibity so the dose can be lowered.

Maybe you need to discuss with the nurses, there is an NHS booklet on azathioprine which is pretty good.

Horseyrider1
Horseyrider1
in reply to saj12

Hi Thanks for your advice I was suppose to see my specialist nurse this week but because of covit 19 she cancelled and is trying to get me another app sorted at another hospital as my local one has had 3 deaths there so I'd rather not go there anyway, Take care stay safe.

Hi there Azathioprine can take a while to start showing results. I take it myself but it's early days for me but my Brother who has Crohns has been on it years and swears by it. You should be having regular blood tests while on this medication also I have been told to self shield as it is a immune suppressant.

Horseyrider1
Horseyrider1
in reply to Abs8

Hi Thanks for your answer I have been told I am only half way there I have been having regular bloods. So I suppose I've got to be patient.

I've been on your dose for a few years now and I'm reasonably ok. None of the other meds worked and one made me worse. I do have to be careful with infections and my skin and joints play up sometimes but it's worth it to lead a normal life that's not totally centred round the loo!

Horseyrider1
Horseyrider1
in reply to Lifluf

Thanks for getting back to me I've just got to plod on if I want to be loo free I'll let you know in another 6wks when I've been on the 250mg.

My son has been on 150mgs for a few years and has blood tests every 3 months.

It has been the most successful medication so far but he still has to use the loo when he first gets up a few times.

He was offered higher dose but preferred to keep it as low as possible and puts up with ear'y morning loo visits as long as his day is mostly loo free.

He does use Cavilon cream to stop his bottom being sore, available on prescription.

His specialist nurse app was yesterday and he got a call instead of going to the hospital.

He has had the NHS letter to tell him to stay at home for 12 weeks.

Best wishes

Ellj

Horseyrider1
Horseyrider1
in reply to ellj

Hi I also got the letter but on talking to my nurse she said she really needs to see me I suppose it's because I haven't been on meds to long she is trying to arrange at another hospital which don't do emergency and only used for minor, so watch this space. Keep safe.

Not sure if this will help - I had problems with keep going to the toilet and watery diarrhea for a while and it was so bad I wouldn't eat all day when at work. I was eventually diagnosed with ulcerative colitis and put on salofalk granules daily . Years on my bowel is free of ulcers and I hardly get flare ups. x

Cheers for your reply, Next time and eventually when I get to see my nurse I might mention this, Not happy on asphripine. Keep safe.

Hi, I was on azathioprine for best part of ten years to treat my Crohns until in Feb 2018 I was diagnosed with bowel cancer. Look at the potential side effects of azathioprine. For all the time I took it, it kept me well. I think it takes three months to be fully in your system. I am off it now since my cancer, I had my resection in April 2018 and have not been on medication since! Recently had a flare up, intestines so inflamed that I had to have steroids. Good luck with the azathioprine but ready the paperwork.

Thank you for your advice, I am very aware of the side affects that's what's worrying me I sometimes think would it be better to suffer the times I have to rush to toilet rather than be so anxious about what this tablet can do to you, I think it's not helped with all this that's going on even though I am self isolating but I still have to go get my bloods done. You staf safe.

you will know this already but stress is a trigger, try, as hard as it is, to rest up and try to reduce your stress 👍🏻

👍

Hello, I was on 125 mg. Of azathioprine for almost 20 years. I started taking it in 2000 and stopped in 2019. It did help but I still had issues for the first few years I was on it and had a bowel resection surgery in 2008. Since my surgery I have been Ok and have only had a few flare ups. So the azathioprine worked much better for me after my surgery. It does suppress the immune system in order to keep the inflammation caused by Crohn's down but I didn't get sick more often due to that. I stopped taking azathioprine last year because there are better medications available now. I am now on Entyvio which are IV infusions. There is also Stelara. With this covid 19 virus I would ask about an alternative to azathioprine just to be safe. Hope this helps.....

You may also like...