Hi newbie here, I was just wondering about taking... - LUPUS UK

LUPUS UK

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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

Jjscosycakes profile image
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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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Jjscosycakes
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gilleyfish profile image
gilleyfish

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

gilleyfish profile image
gilleyfish

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

Jjscosycakes profile image
Jjscosycakes

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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