Diagnosed with DLE 3 months ago. Face, neck, head and chest is covered in it at the moment. Anything lower than 25mg a day of the preds is not really doing anything. Doctor had me on hyydrox for a week but i had the worst week of my life on this, felt dreadfull plus the lupus really came out.
Seems i have the same sort of symptoms as you sle sufferers with the fatigue/lack of energy and the real ups and downs in my general mood, just can't work out if this is down to the preds or the Lupus itself.
Just really struggling to come to terms with the life changes at the moment, have always been very active, rugby player, gym, running, but i get home from work now and it's enough to stay awake past 8pm!!
I am not the vainest man in the world but the state of my skin is really starting to get me down and as i am on 20mg a day now tapering down to 5mg a day i know it's going to get worse.
I don't think for one minute i have got the worst illness in the world and you sle sufferers really seem to go through it!, but 6 months ago i just lead a normal life, which i now realise i took for granted.
Just still seems really strange that i make sure i have my factor 50 with me to go out in the middle of November!!!