Azathioprine

HELP anyone

hi I have SCLE which has been extremely active for 12 months seen rhumy and dermo last friday who have offered AZATHIOPRINE to get me off steroids can anyone let me know if thy have had this medication whether it was of any help

Cheers

Thenomad

[Britchick42]

Hi , I've been on it over a year now. I had to step up the dose really slowly , had to come off it , well have a break due to infections. It's helped some things but not everything, it's been good for my fatigue and I'm off pred, but I still have had the odd flare . Everyone is different, I'd give it a try , I have a fair few friends on it some low it some couldn't tolerate it. I have been fine. Good luck.

[bethsuejane]

Yes, I've been on it for about 4 months now after having a reaction to Hydroxy'. Like you i was concerned about it to begin with. Started off on 50mgs daily and went up to 75mgs in split dose a month ago. I have not had any side affects and my flares have definitely been suppressed. I am moving more easily, walking further, less pain, flushes much fewer and at last I am beginning to have hope of getting back to a more normal life. The fortnightly blood tests are a small price to pay and give me the reassurance that all is well with liver function and white cells. The rheumy nurse is contactable if ever I am worried about anything. She has told me I may have to go up to as much as 125mgms daily but I am hopeful that this improvement will continue and I may not need to. It took a little while to kick in properly but I felt different after only a couple of weeks. My advice would be to try it, relax and trust that they know what they are doing and trial and error is the only way to find out what works for us Lupies! Reading up about it is very informative too. It has been around for nearly 50yrs and used to be called Imuran, it was used to dampen down reactions to transplants and is well tested by usage. I hope you will be like me and not have any of the possible side affects, I only read the tablet info on meds now if something occurs as otherwise I'm looking for problems, haha! Good luck, do post again and let us know how you are getting on. I live in Herts, south of Cambridge, would be pleased to talk if you are near. Beth.

[Needmorehours]

I have been on this for over a year 150mg/day... but it is not really working and getting rid of all symptoms.... still on pred..... 3 yrs and counting. I just can't seem to get off the pred. Every time I reduce the dose I have a flare of some kind; was really hopeful that the Az would mean no more steroids ;-( TBH I was going to ask if there was anything else to try; but I am not hopeful.

I would suggest you read all about it and weigh up the risks/benefits. Only you will know if this is what you want to do.

Good luck.

[Hidden]

Thank you all so much a great help I've to remain on steroids till blood results and next appt 6 weeks it means so much to be in contact with you all who really understand how I feel really appreciate your help I will probably have a go don't know unless you try !!

Take care

Thanks again xx

[Sue2803]

Hi there, I am taking 100 mg of Azathioprine, didn't think it was doing a lot cos was still having pain etc. Rheumy said try and stop and see how you go, well, I was a lot worse not taking it, so am now back on it, ok, am still having pain etc but not so bad,. Couldn't move when I stopped it.

[aliraz]

Just to make you aware....My partner was on Myfortic acid & switched to Azathioprine. She experienced water retention, putting on a stone at least & feeling uncomfortable. She is now back on Myfortic & water retention has cleared. She is happier....

Good luck

[Delila]

Hi I've been on it for 30 years and have not had any side effects at all, I too initially was put on it with a view to coming off steroids. Unfortunately for me am also still on steroids as cant seem to do without them. I manage very well and live a near normal life most of the time. Am also on hydroxychloroquine.

[Hidden]

Hi thanks nice to hear possible suitability for me sounds same on hydrox steroids offered azath next appoint after blood results if ok if I can & I will give it a go appreciated will let you all know how I go on take care