Azathioprine? : I'd love to hear some of your... - LUPUS UK

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Azathioprine?

Dogportraitartist profile image

I'd love to hear some of your experiences with azathioprine. I'm being switched to it as mmf seems to have stopped working for me xxx

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7 Replies
Spanielmadlady profile image
Spanielmadlady

Hi.i was prescribed azathioprine first and it didn't suit me.after 7 weeks I started being sick and i had developed drug induced hepatitis. I had to stop it straight away and wait 3 months for my liver to recover.ive been on mmf now for over 3 years.its simply trial and error what didn't work for me works for others and may work for you.all you can do is try. Best wishes SML x

LuluM25 profile image
LuluM25

I started Azathioprine last June and now taking 125mg per day alongside reducing Prednisolone and other meds. I’ve been switched from methotrexate as I had AKI last Jan/Feb which Rheumatologist thought was caused by Methotrexate. No problems so far with Aza, or they’re very minor if I have had. So used to having little niggles every day it’s hard to tell new symptoms. Similar story to spanielmadlady but with other drugs. Trial and error sometimes. Good luck, hope it works. x

joanneM200 profile image
joanneM200

it’s trial and error. I was switched to Azathioprine from mycophenolate when it stopped being effective, and I couldn’t tolerate it at all, it was causing liver damage, but for some people it is a very helpful med. just keep an open mind, but don’t ignore any new symptoms, I had an upset stomach but hadn’t linked it to Azathioprine, it was the 4 weekly blood test that showed it was wrecking my liver, I hadn’t linked it to my mild upset stomach and sickness, I just thought I had a bug, as I pick up everything going around, but I’ve seen many people here say how much Azathioprine helps, so hopefully you’ll be one of them :) x

LTLL profile image
LTLL

Hi Dogportraitartist, I was put on Azathioprine as a child (when I was first diagnosed) as well as prednisolone. Didn’t really have any problems with it and was on it many years very successfully. Later as an adult my white cell count dropped too low and they immediately took me off it and onto hydroxychloroquine instead, About 4 years ago I had a flare and they put me back on Azathioprine as well as the other two meds above and all good so far. I do get tummy niggles etc but as others have said you get so used to various aches and pains it’s hard to tell what causes what. but no significant immediate problems since being back on Aza and all in all it’s been a blessing for me, so do hope it works for you too 🙏😊x

Froggie70 profile image
Froggie70

Hi there, I was put on it last July after being on Methotrexate for 8 years (was on top dose and it wasn’t working as well). It’s been a bit of a rocky ride, I’ve had a lot more infections (tooth abscesses, a very bad UTI) which means I’ve had to keep coming off it when I’m on antibiotics, never had this trouble on MTX all these years. With this constant yo-yoing on AZA I’ve been struggling with really bad joint pain. I’ve maybe been unlucky with the infections and need to give it a good go to get into my system. As everyone has said here everyone reacts differently and you might find it does the job for you. Hope this helps.

smudge profile image
smudge

I was put on it a few years back - 2016. I was only on it a few months and ended up in hospital with sepsis, which they put down to aza induced pancreatitis. I tried it again, once I was better and had a bit of a break from it but I started to get pains in my stomach again so they stopped it. I'm back on Hydroxychloroquine 400mg a day which I've been on for 13yrs. I was disappointed that they didn't try me on anything else. But yes it's definitely trial and error if you can get any meds.

Sara_A profile image
Sara_A

Hi, I too was started on azathioprine as its meant to be the preferred 1st line drug of choice, I was ok to start with and felt good on it for a bit but I began to show signs on my 2 weekly and monthly blood tests that my liver couldn't tolerate it and it was elevating my liver enzymes. (This is what other people mean by its causing damage/wrecking their liver etc but once you stop it generally the liver enzymes return to normal after a couple of weeks. They can then try you again on it and see if it happens again b4 trying a different DMARD.

I tried but it happened again so we stopped and I tried MMF which again worked really well for a time but its affect wore off after a while.

I am now on 25mgs MTX injection weekly plus 15mgs steroid daily and hydroxychloroquine

Definitely worth trying but make sure u have the regular blood tests to monitor ur liver function esp and see how u go!

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