Pain on Azathioprine

[jmc37]

I am on Azathioprine and been experiencing pain in higher abdomen/chest area mostly on left side. GP said it was an upper chest infection but after antibiotics its still there. Has anyone else came accross this?

[Rachaely]

I've been on 50mg of azathioprine for 2 weeks, no side-effects apart from a strange taste in my mouth (which has now gone away) so they may start ramping the dose up soon to try to get a platelet increase and I may get more side-effects as a result. I think there is something in the side-effects information about stomach/chest pain with this drug, so maybe look that up and speak to whoever's treating you for ITP?

[Juliah]

Hi, are you on Pred aswell or just Azathioprine? I used to get chest & lung cramps with the pred but i also got hip pain which eased off when i came off the Azathioprine but my platelets have stayed stable around 250k. Hope the pain eases soon.

[Rachaely]

hi again - can now report back after 4 weeks on azathioprine (no other meds) - was basically OK on 50mg a day, but when dose was doubled to 100mg last thursday, things went rapidly downhill! Incredible pain in higher abdomen and chest area, just as you describe, plus vomiting, spasms - i felt like everything inside my rib cage had tripled in size and was trying to get out. Also got a rash the next day too, by which time I'd spoken to docs and gone back to resuming on 50mg when I felt better (whcih I did by the Saturday). Unfortunately, 50mg a day does nothing for my platelets, count of 6 last week, so docs may want me to try the double dose again after I see them tomorrow, maybe split over 2 meal times though. I'll let you know how that goes - but I'm definitely not feeling right even on 50mg any more, so I doubt this is going to be much fun.

How are your pains going?

[Rachaely]

Another week on 50mg and I've basically started changing my eating habits to minimise the digestion-related side-effects - can really only eat very small meals, or it feels really uncomfortable / painful. On the plus side though, it's helping my portion control so I'm losing some weight, and also (maybe unrelated) my count was 29 last week (up from 6). Not sure if it's the azathioprine, or the H pylori eradication I did a few weeks ago, but here's hoping it wasn't a glitch / blip and my count's still that high when I get it checked tomorrow!

[Rachaely]

count of 47 yesterday ... and feeling much better for eating small portions, not really noticing any side effects any more. That said, there are some concerns over a couple of results in the liver tests (AST and ALT were way up the week after my bad reaction) so waiting to see what they were yesterday.

[jmc37]

Hi I had to come off it last week could no longer put up with the pain, my count was 32 thats the best its been for weeks. I have decided to do nothing and not have my blood taken weekly just go by symptoms (bleeding) which I have not had for ages. I go back mid june to re check it all. My pancreas blood test was borderline on the azathioprine and that scared me. My consultant keeps telling me that Itp can clear up after a year? my year up on October, if its not they are talking about removing my spleen. I have been told I have Lupus to, and this may be what is causing ITP.

[Hidden]

I tried azathioprine once too and it also made me sick. Every time I ate anything I felt really nauseous and then one day I actually vomited after a meal and it was so painful and horrible that I never took another tablet.

I'd also refuse the splenectomy.

[Rachaely]

My liver counts took about a month to come back to normal levels after the one dose of 100mg azathioprine - they'd increased immediately afterwards (ALT was 100, GGT over 125) so we reduced my dose to 25mg per day. As of 2 weeks ago, LFTs were all normal again, so am now on alternating daily doses of 25mg and 50mg - all a question of balancing liver issues with platelet benefits - I've been in the 20's for the last month, slight increase last week to 29, so who knows, I could exceed 30 soon! Only side effect I notice now is that I can't eat big portions of food without feeling uncomfortable and bloated ... which has had the benefit that I've lost almost a stone in weight, and in a healthy way, surprisingly!

[Rachaely in reply to Rachaely]

Update - LFTs have continued to be normal, so was on 50mg azathioprine for 2 weeks, now on alternating daily doses of 50mg and 75mg. Definitely have to increase this drug very slowly or I'll get that awful reaction again. Given that my platelet count was 37 this week (yay!) i really don't want to increase too quickly and have to take the dose right down again. The portion size impact has almost gone away, and I notice a bit of dizziness due to low blood pressure sometimes, but other than that, I feel fine on this drug. Worth persevering, in my case, but appreciate that others have a bad time - and having had one instance of that, I can understand why some people need to keep away from it.