Azathioprine

[eb12080]

Hello everyone, i have only just joined and looking for some advice.

I have crohns disease of the terminal ileum and was started on azathioprine in Febuary. I was excited to try something new, as i have been taking 20mg prednisolone for a year now.

4 weeks into taking 50mg azathioprine, i was admitted to hospital.I was having extreme pain in the upper abdomen and was throwing up. My blood indicated either extreme inflammation or infection. I stayed in hospital for three days and they were unsure as to what was wrong with me - although the pain subsided.

The doctor at the hospital said i may be intolerant of azathioprine. When i was discharged, no one was able to tell me whether or not i should continue to take it. I called my GI on returning home, and he told me he would call me back which of course he didnt. I took it upon myself to not continue with the aza, as i could not tolerate being so ill again.

I had an endoscopy yesterday, and the doctor who performed it decided that what was wrong with me was taking the steroids, and i needed to restart to aza. After phoning my GI again when i got home, his secretary called me and told me to restart it.

I am terrified of being in so much pain again.

Plus it is my little girls 3rd birthday on may 6th, and i dont want to miss it. I missed her 1st and 2nd birthday due to this disease and i dont want to miss her third birthday?

Would you restart the aza? Is there no way the aza caused the pain?

Im sorry its so long but i dont really know where else to look for advice

Thanks for reading

 

[DustyKat]

Hi eb12080 and :welcome:

Prednisone can be pretty rough on the stomach so I assume the doc saw some damage there?

Having said that Azathioprine can also cause issues, that being with the liver and/or the pancreas which will can cause the sort of symptoms you describe.

Have you had a TPMT test done?
It tests whether you have the enzyme necessary, in sufficient amounts, to break down the Azathioprine.

Were you having weekly blood tests done (FBC and LFT's) once you commenced the Azathioprine?

Dusty. xxx

 

[eb12080]

Thanks for the reply.

No. There was no damage, he was saying that it is likely that because i have taken them for so long that the pain i experienced was my something like steroid insuced dyspersia? Or something like that!

I had tests done throughout and as far as i know, they were all okay 0 but i dont know who is looking at the results??

Really wish someone could just give me a straight answer for once, instead i have doctors telling me its something different everytime i see one! What to do eh! Thanks again x

 

[alex_chris]

First, being on 20mg pred on a constant basis for a year is rather unusual, steroids should not be used long term.

Anyway, it could be aza or not be aza that caused your problems. It is entirely possible that it had nothing to do with your recent problems.

In any event, your GI doesn't sound to be the most trustworthy (at least from what you write and the fact that he left you on steroids that long). Have you considered switching to a GI that has specialized on Crohn's?

In any event, rather than just restarting aza, I would start 6mp - it's basically similar in its function to aza, but many who exhibit side effects to aza tolerate 6mp. Alternatively, there are always biologics if you can't take immunosuppressives, but in any event you should really tapper off the pred.

Just my two cents...

P.S. in any event, 50mg of aza would be a dose that is too low to be effective in any event, the effective dose is about 2-2.5mg per kg bodyweight (or 1mg per lbs) although for the first few weeks you may start with a bit lower dose.

 

[eb12080]

Thanks

I am always worried about the steroid thing, i cannot wean without flaring, so without the steroids i cannot live a normal life. This terrifies me.

I feel that maybe i should transfer hospitals, as i have been seeing this consultant for three years and i am nowhere better off than i was when i first went to see him.

I have no idea what to do, and am left with what feels like very few options.

I do appreciate the reply though.

Thanks

 

[alex_chris]

I have no idea what to do, and am left with what feels like very few options.

There are quite a few options actually. As said above, 6mp instead of aza, or any of the biologics (remicade, humira etc.). And if none of the work (unlikely) there is still LDN that might just work for you.

If you have been seeing your doc for 3 years and he has done nothing much except put you on steroids and now on aza without explaining long term management of Crohn's, I'd say it's time for a new GI. i might sound drastic, but in the last 12 years I have lived in 7 different cities in 5 different countries and I know that more than half of the GIs aren't really that good and very often are stuck in what they learned 15 years ago in med school and their early training without reading all the recent literature and studies on Crohn's.