Well i gave Azathioprine a go....: unfortunately i... - LUPUS UK

LUPUS UK

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Well i gave Azathioprine a go....

tiredmum profile image
5 Replies

unfortunately i only managed a couple of weeks.

I was a bit naughty and started off on 25mg per week even though it should have been 50mg, everything was hunky dory so the following week I upped the dose to 50mg, i felt like i was pregnant again!!!! The constant nausea was awful however I persevered. I went a saw the nurse for my routine blood test, who told me to contact the Rheumy nurse as I looked absolutely awful - I thought nurses were meant to make you feel better!! She was fab, told me to go in for blood tests and then a follow up on thursday. I increased my tablets to 75mg and spent the next day in the bathroom. I reduced the tablets back down to 50mg but the nausea was so awful i was hardly eating anything at all.

After a visit to the rheumy nurse I have thankfully been told to stop the tablets - yay!!!!

Waiting for a call next week as to what to try next, looks like mycophenolate might be on the menu

:)

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tiredmum
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5 Replies
AngelaW profile image
AngelaW

I tried Azathioprine a couple of years ago but ditched it after I came out in an alergic rash (looked like a beetroot for a few months, lol !!). Been on methotrexate for a few years but have just been switched to Mycophenolate - must admit I am following the prescribed dose! Start week 3 next monday and increase upto 1g per day - not had any side effects so far, fingers crossed! Only drawback for me is these tabs are only prescribed by the hospital until settled on the tablets - apparently GPs wont take the responsibility for prescribing them (?!) and my hospital is a good hours drive away, still, it may be worth it. Take care, hope your new tabs work for you. xx

Its all very scary ive had the blood test done am just waiting now to see if i have the right enzyme to take it ....thank you for your reply s its very helpful to hear other experiences hope you are both well x take care x

morlobach profile image
morlobach

I have been on Azathioprine since 1998 and although it took months to settle , it's fine. I was before on PLaquenil but that left sediment in my eyes and thus made me blind. Lucky it reversed as soon I stopped ( took 7 months)

ONe side effect with azathioprine...: if you forget them you'll feel within 12 hours a nasty headache popping up. I take 100mg in the morning and 100mg in the evening... I tried reducing twice, but end up flaring up so badly I have to take prednisone.... so I prefer the azathioprine , it doesn't make me fat. My blood is tested every 8 weeks... and honestly after the first 4 months all side effects were gone.

Lulabelle profile image
Lulabelle

Ladies - i did post on her a few weeks ago after seeing my Hematologist 4 - 5 weeks back. Re the Azathioprine medication - there is now a gene test that can be done prior to commencing this treatment. It will check to see if you can tolerate this medication before taking it. You no longer have to 'suck it ' and see. i will be discussing this with my Rhemu on Thursday. I am currently on 1500mg MMF and 5mg steroid which I am hoping to start reducing this week. with the MMF I 'touch wood' have not appeared to have any side affects! However, hate taking all these med's as worry over the long term, but I know a lot of this is out of my control.

Re GP not prescribing this medication? My hospital Rheum wrote to my GP from the start 17 months ago and each time it is increased they are notified accordingly. I have my bloods done every 4 weeks and Mycrophenalate Levels checked every 8 weeks, by the nurses in my GP surgery! i think some GP's make it up as they go along lol!

Lulabelle x

Lisa78 profile image
Lisa78

I have been taking Azathrioprine 150mg daily for 6 years along with Prednisolone & have recently been put on Plaquinel as well.I get really bad nausea spells accompanied by extreme tiredness but doctors just say its just a side effect & that i'm doing well but it does'nt feel like that.No one really knows how it feels unless u experience these problems.

lisa

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