can anyone help, im back on the steroids again as not been right for months just dontl like them. is anyone on them

[lainylooloo]

is it worth being on a very low dose all the time im fed up feeling crap most days, sorry for the moan feeling sorry for my self lol.

[Sjink]

Hello lainylooloo. I was on low dose (5mg) for about 8 years but have had to come off them as began to get osteoponea - the beginning of osteoporosis. It was see in a bone scan of the base of my spine. I had more energy when on them and now spend more time resting in bed and less time doing things I enjoy. Work is now more tiring and so I just come home, eat and sleep the days I work. Too tired to cook or anything like that. It was better in this respect on steroids. But long term steroids have a number of side effects and my rheumy was keen to get me off them. Getting off from 5mg to zero was hard it took two goes and last go took 9 months!! Glad to be off them basically but miss the energy. Xx

[annie330]

Hi to you both, it's interesting reading Sjink's reply and making me think as I'm on low dose 5mg all the time and have been for about 5 years. I've never been given big doses except when I have rituximab (but that is standard treatment). I've thought about suggesting I come off the pred as I thought that with it being a low dose it doesn't really do much, but I'm realising that wont be the case and I think I need to have a good think about it.

Lainylooloo sorry but guess my reply doesn't help you, other than to say a low dose probably does help, I take calceous tablets every day which are calcium and vitamin D (the plan being that this counteracts the affect steroids have on your bones, interestingly it was my GP who put me on this not the hospital consultant, and my GP did it as soon as he found out that the hospital wanted me to take steroids permanently).

Unfortunately for us it seems that want we gain on one side we lose somewhere else and I guess it's trying to decide what is the best balance.

Lou

[Sallyk21]

Hi, I've been on them constantly for 30 years and so far have been ok! I have regular bone scans which up to now are Olson fine. However like you I still worry about being on them for so long but worry without them all my lupus problems will come back. I suppose it's a balancing act and the lesser of two evils!

[Hidden]

Hello,

I have been on various prednisolone doses for 13 years now,can't seem to get down below 10mg as get major flares however small reducing dose I try. My Dr's have decided to keep me on 10mg now. I do get bruising on my arms at the slightest touch as they have thinned my skin. I take Calceos daily and Alendronic acid weekly, and so far my bones are ok, thank goodness. I think it is worth keeping on a low dose steroid, as it is miserable to keep feeling so worn out.

[lainylooloo]

thanks for the replies, been really helpfull im on 20mg at the moment and have noticed a big change already,wish i could feel like this all the time, i waz on them for two years a whlle back and took a long while to get off them, this time my doc had just put me on them for 10 days i wonder wat the lowest i could go on and still feel good sometimes feels like im being just lazy siting all the time but now i feel better i know its not my head lol,really nice to have found this site and know there are other people in the same boat, hope you are all having a good day x