steroids: hi. i ve been really struggling for... - LUPUS UK

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steroids

moss profile image
moss
5 Replies

hi. i ve been really struggling for months. i am a ? sle with 2 ndry fibro. it s the fatigue -really has got to me sore throats , joint pains ect all following sinus infection which took 3 courses of antibiotics. last week dr took blood s for glandualr fever that have come back negative and told me to up my steroid s from 5 mg one day and 10 mg the next to a straight 10 mg for mext few weeks. ( i also take all the usual sle meds) i dont get it cause i ve started to pick up yet it seem such a small increase in the dose. i ve manage three days with out having to sleep once sometimes twice a day. i ve been at ? sle/connective tissue disorder for years as bolod s never been totally positive but have raynards ect since this lable was attached. whats other experience of steriod increase following aflair, thanks mandy

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moss
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Jude65 profile image
Jude65

Steroids are amazing but there is the downside to them - side effects over the long term.

I find that it makes a difference if I change just 1 mg of prednisolone either up or down.

Glad you are feeling better

moss profile image
moss

i ve been on them ten years and no one has eva discussed side effects

lesaliblue profile image
lesaliblue

As Jude65 said - there is an amazing difference in even 1mg of steroid rise - I manage on 5mg, but under that then I am in trouble - I keep osteoporosis at bay by have the calcichew tablets, plenty of yogurt and I swim every work day, even if only 4 lengths. Life without the steroids and other medics would NOT be enjoyable, take care and staywell if poss

margareth8537 profile image
margareth8537

My consultant told me to double up steroids - to 10mg if I was going through a very bad spell and then to come down to 5 again over a couple of months. Even after a few days i can see a difference.

Margaret

moss profile image
moss

thng is i also have secondary fibro - so the pain does nt go and i find it hard to know for sure the extent that increasing them ahs. 2 days after upping dose i felt much better-no where near as tired but today i feel drainned

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