Azathioprine and breathlessness

[Bunty]

Today I saw the IBD nurse, she's calling me back tomorrow to tell me whether the consultant wants me to continue with azathioprine at a low dose to see if my body will get used to it (liver enzymes have been raising and I'm suffering breathlessness) or if it will be changed to 6mp. They won't have today's blood results till tomorrow.
So, a question for you...have any of you on azathioprine experienced any breathlessness? If you did, did it mean you coming off aza? Or did this side effect gradually wear off?
I'm lead to believe it's a fairly uncommon side effect...but nevertheless it is a documented side effect.
I'm also to have some sort of TB blood test week just in case they decide to put me on infliximab, never heard of this till today
What a steep learning curve
Bunty x

 

[Layla]

Yes I had breathlessness on aza, it caused anaemia for me. I tried it twice, the second time starting on a low dose of 50mg but it still happened so I was taken of it. Never tried 6mp, I can only assume they expected the same thing to happen. They did say it was a rare side effect. Have you had recent bloods taken? How is your HB?

I went on to MTX instead and when that didn't help, Humira.

 

[David]

In addition to Layla, I've seen a handful of other people around here report exactly what you speak of.

Hopefully they get things optimized for you soon!

 

[Bunty]

Thank you both for your answers
Layla, I had blood taken but the results won't be known till today. I've been taking 25mg for four weeks to see how I tolerated it. It was suggested in clinic yesterday that perhaps the breathlessness was down to a chest infection (I have absolutely no signs of that..no cough, no wheeze, nothing) and I was sent for an X-ray.
Nothing for it but to wait and see what the consultant decides.
Thanks again, much appreciated.
Bunty x