Hi newbie here, I was just wondering about taking steroids alternate days, & does anybody else do this I have just been reduced again 5mg/8

I am 29 years old, I was diagnosed 12 months ago after nearly a five-year battle of going back and forth from doctors. After the birth of my daughter, My health went down quite severely, I was started on steroids. I am now on hydroxychloroquine and doc wants to start me on azathioprine also. In the hope to reduce the steroids further.

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  • IM currently taking 5mg of prednisolone and the docs don't seem to be able to get me off it been on them since i was 14 (im 24 now) im also on hydroxychloroquine which i get on fine with i never really got on with the azathioprine but hope all works out better for you

  • Also i was taking steroids alternate days when i first got diagnosed x

  • Thank you Gilleyfish and when You were taking alternate dose as opposed to now was there any difference? Have you had any bad side effects from taking the steroids I am worried about putting on weight moon face etc I do have an artificial leg also so if I was to put on weight this would pose more problems ...

  • I think different people react in different ways to steroids. I dont usually get the balloon features until I get up to at least 20mg

    But I agree with gilleyfish that coming of of steroids completely is much harder than starting them.I have been on 10mg for ages as as soon as I try to drop the side effects are too great. I think they can prescribe in a smaller tablet than 5mg, but there seems to be a real reluctance to do so. I think the only way I am ever likely to come of steroids is if I am taken down in minute steps and for me to even attempt to drop from 10mg to 7.5 produces nasty side effects.

    When I was first diagnosed I attempted to self manage without any drugs, but like so many others had a severe flare that was brought under control with steroids and thats when the slippery slope started. (I mean my bodies dependence on them)

    In the past I have been on both plaquenil and azathioprine and am no longer taking either of them, but I cant drop the steroids.

  • Hi there, rhuemys do introduce these other drugs in the hope that you can reduce the steroids. (Steroid sparing). I have taken steroids for approx 12 years now. My maintenance dose is 5mg, but have often had to increase. The aza may help you enough, so it's worth a try. If you can manage alternate days on steroids, then of course it will be better in the long term. Have to say, I am lucky not to have moon face, and although I am a stone and half overweight, I blame that more on lack of movement than food. For me steroids are a necessary evil, but I was well on aza for quite a while. So good luck to you with it.

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