Azathioprine

[Harry19]

I am mid flare and feeling dreadful

I failed on plaquinin due to a skin reaction 😓 so much treatment was stopped in early March .

I was due to be seen to discuss my next options but that didn’t happen because of covid 19 . So Iv gone three months without any treatment and boy I’m feeling it .

Rheumatologist called me this week suggesting Azathioprine . Has anyone here had any success or issues with this drug ? I just want to feel well again

[jane1964]

Hello Harry19,

I take azathioprine for a different autoimmune condition ANCA vasculitis, but in many ways it is similar to lupus.Azathioprine has changed my life it has reduced the pain improved my joints and almost stopped the flares it took me years to get a diagnosis and I was pretty ill by the time I got treatment but now I am so much better.You will need regular blood tests especially at first and I found I had some nausea at first which was solved by eating more for breakfast, but otherwise I have found azathioprine brilliant for me.I hope it works as well for you if you decide to try it.

[Harry19 in reply to jane1964]

My goodness that’s so lovely to hear !! Thank you for replying and giving me some hope . Xx

[HelenL75]

I tried Azathioprine last year for my lupus - I know when you feel rotten you want to have the good stories, but good to know both sides I think. It didn’t suit me as made me feel nauseous but I know a few people who are like jane1964 who it was brilliantly for

Fingers crossed for you

Hx

[Harry19 in reply to HelenL75]

Can I ask what you tryed instead x

[HelenL75 in reply to Harry19]

Of course - prior to Azathiprine I tried mycrophenolate before and that didn’t have much affect didn’t make me feel poorly but no better so my rhemy had put me back onto the rituximab infusions had three in last three years and that really works for me

Let’s hope you find something that works for you soon 🤞🏼

Hx

[TamAni]

I've been on azathioprine for 11 years this month, for lupus nephritis/SLE. I have not had any issues that I can point to it as I've got some other comorbidities and different meds interact differently. My dose was dropped in 2016, for no known reason and I thought I was probably getting better but another doctor upped it again 2018. The only thing is as it's an immunosuppressive drug, you have to be on guard... I think we already are watchful most of the time. You could read about it on the British national formulary site, but bear in mind that paracetamol also has side effects but we take it. Good luck and fingers crossed you'll be fine.

[Spanielmadlady]

Hi.i was given azathioprine for lupus.like helen it didnt suit me.i managed 7 wks on it then I started being sick 2 hrs after I'd taken it.turns out id developed drug induced hepatitis.it was stopped it straight away.i then had to wait 3 months for my liver to recover( which it does from DIH) before I could try something else.ive now been on mycophenolate for 8 months.its a case of trail and error until you find which drug combo works for you which I know is hard as these drugs take so long to work but we are strong cookies.kind regards xx

[Mya12king]

Hi Harry. I have been on Azathioprine for 10 years in September. I tried Hydrocloxachloquine (sorry about spelling) at first and reacted to it with a rash and swelling.

Azathioprine has been like a new lease of life for me. I am able to enjoy life more as it has greatly reduced pain in my joints, so much so that I go to the gym, yoga and pilates. Of course I do them at my own level which is comfortable for me.

I hope this is the answer for you too and that you are soon feeling well again.

please let me know how you get on.