The Australian Sjögren's Syndrome Association
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Azathiprine

Hi all, I am starting treatment, now on a different meds called Azathiprine, anyone else take these & what are your experiences of taking this med?

many thanks

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Hi

I was started on this drug earlier this year but I didn’t do well. I had to have a TPMT test prior to starting and it was flagged I was in a range of people who may get sick with the drug. I did !

This doesn’t happen to everyone though so I hope it works well for you. I’m going to be starting on MMF immunosuppression now x

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Hi Ange - sorry - no, I have never taken it. I just didn't want you to think we are ignoring you or something (other than Yllek..)

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I also was given Azathiaprin but felt unwell. So it was changed to MMF which has been a great help. Good Luck !

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Hello Angellealea1

Azathioprine has changed my life. It took a while to get into my system but what a difference it's made. I still have bad days but not so often. I have blood tests every 2 months . I really couldn't manage without it. Good luck and I hope it suits you too.

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Hi Talltutu2003, so happy the meds have worked, I'm hoping they help me in some way, it's been a long 4 years..

All the best xx

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Hi Tallytutu. I was wondering if I could ask how long it was before this started working for you? I started azathiaprine about 10 weeks ago. Other than one week of bad headaches I don't appear to have had any major side effects so far but I'm not sure whether I'm getting major benefits either.

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Hi Jessie_2014.

Taking Aza was similar to hydroxy , it took about 12 weeks in all to feel a bit better. It's not until I have to stop it for some reason ( last year whooping cough ) that I realise all the old symptoms start creeping back. Gradually I noticed that my joints weren't as painful, my kidney function improved. My rashes and gastro problems started to slowly recede. I still have problems with fatigue and brain fog but I'm better than I was. I have no side effects . I would prefer not to take any meds at all . I'm the girl who refused to take a paracetamol tablet ! Oh how things change. 😔I really hope you start to feel better soon and this medication helps you. By the way one of the most important things I done for my self was to make sure I didn't over tire myself. Something I resented but it was so necessary to keep this lupus of mine under control. Best wishes.

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Just look out for stomach pain in your side. I had this after 3 weeks - ignored it for a bit then couldn’t and went to A&E where it was misdiagnosed as cholecystitis and then later as UTI Sepsis. I went back on it but got terribly sick again and that was when they realised it was the Aza causing pancreatitis. I think only about 1 in 300 people has this reaction so I was unlucky but just watch out.

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Hi Twitchytoes, wow how scary for you, good job you got checked out, I know I will have some side effects, just hope I can get through them without any problems..

All the best xx

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