Azathioprine: i was just wondering if anyone else... - LUPUS UK

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Azathioprine

Donnygirl profile image
11 Replies

i was just wondering if anyone else was put on azathioprine besides the hydroxi and prednislone. I also have to have steriod injections has a top up and always take co codamol. My rummi says they are struggling to get my lupus under control this i know is true because i am still in constant pain and need the pain relief. Not understanding levels but spotted that my ana levels are at +3200. Dont know if this is good or bad. Any answers please

Gill

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Donnygirl profile image
Donnygirl
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11 Replies
JacquieCD profile image
JacquieCD

Hi, I am just about to start taking Azathioprine...I have intolerance to lots of different drugs. Just came off Hydroxychloroquine as it made me itch so badly. I am going into hospital for an overnight stay in 2 weeks for observation when I start it to ensure I am not allergic to this drug too. Just had steroid injections in both shoulders on Monday to try to help pain. The only painkillers I can tolerate at the moment is Oxycontin...but I dont like to take it if I didnt have to. I hope this helps. You are not alone x

Jacquie

Donnygirl profile image
Donnygirl

Thanks jacquie :-) It is been added to my list of medications and have had a blood test to check my enzymns.... so glad im not a doctor haha... im sure i dont have intolarence to the meds im taking other than im still in lots of pain :-( i really hope that this med works for you and good luck with the hospital let us know how you get on x

twist1 profile image
twist1

Hi I was on azathioprine for a bit but had to come off it as it didn't agree with me. This was in the early stages where they use you like a guinea pig, finally ended up on mycophenolate mofetil, hydroxy and steroids. Touch wood seems to be the best combo by far but still have a lot of pin

roobarb profile image
roobarb

Hi Donnygirl

I had great results with azathioprine initially. It cleared up my lupus rash for the first times in years, & gave me more energy. Unfortunately as the dose was increased, I also developed drug sensitivity, like JacquieCD. But please don't worry that this will happen to you, I know of loads of lupies who take it with great success.

I really hope it works for you. X

jennywren444 profile image
jennywren444

Hi, I take all of these along with morphine, celebrex and pregabalin amongst others. My lupus has never gone into remission but I can happily say that I feel in less pain than I ever have done since starting azathioprine over a year ago now. It's a bit of a pain (pardon the pun) having to stop and start with infections etc but I wouldnt be without it. Take care and good luck xx

Donnygirl profile image
Donnygirl

Thank you for all your comments it has really helped to put things in order in my head :-) i just want to spend some time pain free so quite happy to be used haha. Since taking the hydroxi i have for the first time in ten years got a healthy looking tan instead of a mass of rash x sometimes i just get this idea that all these meds are going to be my miracle cure and make me feel human again and in reality that is not the case.

Coppernob profile image
Coppernob

Someone I know who is intolerant to aziathoprine was given mercaptopurine(?) instead and copes well with that. As I understand it, mercaptopurine is the end product in our bodies of azathioprine. Might be worth asking about?

Slowmo profile image
Slowmo

Hi, I take aza along with hydroxy and prednisolone. Also take 12hr slow release tramadol and co-codamol. Whilst I still have many of the symptoms of SLE and feel less mobile in recent months than previously the counsultant is happy that the AZA is working (according to blood results). I haven't had any major problems, some nausea and occasional sickness when first prescribed and on each increase but usually able to manage this by eating a biscuit or banana (some small snack) at the time of taking, also resting when feeling nauseous seems to help.

All the best when you start it, Slowmo

Donnygirl profile image
Donnygirl

Thank you everybody xx

juneybells profile image
juneybells

Hi I'm on all three of these and have had some good results still get some pain but no where near as much and I am much more mobile than previously, does take time thought, I didn't feel the effects for about three months even though blood test were good. stick with it if you can, good luck xx

Sue2803 profile image
Sue2803

I too am on all three, plus the slow release Tramadol and also Buprenorphine patches. Still do have pain, but when I tried to stop some of the painkillers because I was convinced they weren't working, I soon realised that they were to an extent.

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