Azothioprine experiences

[SonyaNME]

Hi,

I’ve been taking MMF for about 4 years but recently tried switching over to Azothioprine as MMF isn’t safe for pregnancy.

I was ok initially but after about 10 days had severe gastric side effects. No one was sure if it was the azothioprine so since then I’ve stopped taking it and tried reintroducing 3 more times. Each time it makes me sick, the last occasion I only took a 1/4 of the dose as suggested by the lupus nurse but was sick 2 hours later. I can’t get any appointments with my team for another 2 weeks so I was wondering if anyone else had a similar experience & if they had been given any alternative options (from my research online it doesn’t look like there are any).

Thanks

[whisperit]

Hello SonyaNME

Sounds very much like my experience. Tapered up to 100mg over a month with no problem, but then woke with a high temperature. Admitted to hospital and took a break from the aza for 5 days. Resumed on 50mg and was sick. Another break of a few days and resumed on 25mg - was very sick. Gave up.

I haven't yet had any word from my rheumy about an alternative, but rituximab was suggested before aza. Given a choice, I think I will opt for one that has a different mode of action to aza, but that may be unrealistic/over-anxious. From what I can see online, it looks as if there are some alternatives in pregnancy and for breast-feeding. See here, for instance arthritisresearchuk.org/art...

[SonyaNME in reply to whisperit]

Thanks for your reply & the link, it looks like the alternatives there are only for RA & not SLE but will bring it up when I get my appointment. Sorry to hear you’ve had the same experience, very frustrating when they say it’s generally well tolerated by people. Hope you find an alternative that suits you

[whisperit in reply to SonyaNME]

Thanks. The RA site seemed most accessible, but if you want to go through detailed guidance relating directly to SLE, have you seen the British Society for Rheumatologists document?

academic.oup.com/rheumatolo...

Hope you find a solution x

[SonyaNME in reply to whisperit]

Thanks, that’s a good resource to have