Had to stop azathioprine again!

[Sara_A]

Hi

I have lupus and aps, mainly affected by fatigue and joint pain. Was started on azathioprine and gradually went up to 3 times a day.

This made my liver enzymes go sky high at 10 times the normal! so had to stop it until liver went back to normal then consultant wanted to try it again. I've recently just increased from twice daily to 3 times a day and within about a week my liver enzymes have gone up to 4 times the normal, so got to stop it again!

Has anyone had this and what have the docs tried next? Am on hydroxychloroquine too already and steroids

Thanks!

[Hidden]

Next options might be Mycophenolate - which I'm tolerating well having had nausea and liver function issues with Methotrexate, anaphylaxis on Hydroxy and another and pacreatitis/ sepsis from Aza. Unfortunately they can't tell which drugs we will tolerate or not - it's just a case of suck it and see. But generally Mycophenolate seems to be the best tolerated from this family of immunesuppressant drugs. Good luck with whatever you try next.

[Sara_A in reply to Hidden]

Thanks, from what I read mycophenalate seemed to be more for kidney issues? Does it help ur joint pain and fatigue?

Sara

[Hidden in reply to Sara_A]

Well I do know quite a few here with Lupus who take it and don't have any kidney issues.

I think I might have early kidney issues and am partly on it to prevent organ involvement hopefully. But it is also an immunesuppressant so it should slow down the pain too if it's caused by autoimmunity/ systemic inflammation. There are other reasons for pain though such as neuropathy and arthritis. I'm in middle of a very complex house move relocation so it's not really fair to assess whether it's helping my pain or fatigue just now!

But Methotrexate did really help with the pain I must say. Nothing I've read suggests that these drugs can help the fatigue, apart from Hydroxy which you're already on.

[Wenwen]

Sorry for your problem with AZA. I was on AZA and had white blood cell down to near zero! It was only find out later when I had pneumonia and in the ER.

I'm on Cellcept now but watch out the WBC anc blood work closely.