changes

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!!!

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  • Yes living in britian it is odd having to put on the factor fifty in the middle of winter. I didnt use SPF in the winter until I got caught out on sunny December day and my face swole up, not a good look. I have SLE and was diagnosed after my daughter was born 8 years ago. I was in shock as I lived a very active life gym/swimming/keep fit/generally enjoying myself! coupled with the loss of energy I had a baby to care for- in a way she has keep me going through some dark times. Looking back for me it was like losing a very good friend, I was in denial, angry, definant, passive and eventually have come to some sort of acceptance. I still exercise- I power walk and have recently started running again- although it is a very slow and steady jog! and as naff as it sounds I really do enjoy each day. I work full-time, have a lovely circle of understanding friends as supportive husband and a hyperactive 8 year-old- so I guess life goes on, I am not the person I was- I am me.

  • Hi there!

    Cheer up as it will go when the flare subsides and often it is a case of adjusting the medication to get it right.

    I have had that 'special' lupus look on my skin quite a few times in the past and once really badly, but it did clear up.

    make sure you rest as much as possible and try not to stress out and keep taking your medication. Plaquinil can take quite a few weeks to kick in and steriods often do the trick. Not nice but they can work well.

    I take Mycophenolate/CelCept now and it has made me much better.

    Hope you feel bvetter soon. x

  • I get a very red face with SLE that burns and makes me feel off colour but its nothing like the skin problems some of you talk about. Have to be careful in the sun, I burn easily, in fact I stay out of it now, if its very hot I feel ill and cant breath properly. I have a lot of sympathy for those of you that have had to adjust so much. As a stay at home mum, now turned 60 I lead a very quiet and sedentary life. My worst times are mornings, used to be my best but these days I struggle to wake up, always in a sweat and I dont sleep properly ..fatigue's a big problem...I dont think I'll ever get used to SLE and the problems it brings but I have learned to take things one day at a time and rest when I need to...

  • Hi there,

    Iv had DLE for 10 years. I sympathise, ..lack of energy/exhaustion comes and goes, as does leg pains. 2 years my face/skin was just red and angry, i had no energy and felt angry/depressed - and it wouldnt go away, it was the worst i had ever seen it, and i know its not as serious as SLE, but it was devestating. I started mepicrine, 2 years ago and my skin has improved my 80%. I was always outdoors , so had to change lifestyle as well. Huge hats and factor 50, and thats just winter....and summer, HUGE hats.....i still go walking- , i just have to know my limits and rest when need it. it definately impacts on your life choices...but dont let it ruin your life. Nothings perfect, such is life.

  • snap, my lupus flare starts in oct/nov, however i have subacute cutanous lupus, skin and organs so i feel for u i know when my skin flares up its a nighmare, the one and only good thing is because i flare in the winter ill wear baseball caps and scarfs so no one can c, i have been on methotrexate for one year now and its fantastic ive not had 2 have steriods once this year, u may want to ask about that its an immun suppressant u may have heard of it , there are side effects but when i weighted up my skin problems against that metho won by a mile good luck:)

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