[Kellym01]

Hi everyone,
just after some advice really and to talk to other people who know!!

I got diagnosed with DLE(Discoid Lupus) over 10 years ago now through the hospital- biopsy, medical history ect ect. However until the last 2 years i hadnt had many flare ups. In september 2006 my father died really suddenly and horrifically and it was a really stressful time, since then my flare ups ave been happening more often (skin rashes and general fatigue)... at the end of january i got a chest infection and slowly went down hill, i ended up in A&E in severe pain, turns out i had pleurisy and still obviously had my chest infection despite three long courses of anti biotics. i also had my butterfly rash back with a vengence! the tiredness is overwhelming at the moment and i've just had a repeat xray and bloods done! anyways what am wondering is has anyone else had DLE that has progressed to SLE?? My doctor does now seem to think my lung infection/pleurisy is lupus related... Does this mean i'm likely to get SLE??
Thanks kellym01.

 

[Maia]

DLE can progress to become SLE in about 10% of the cases. The fatigue and pleurisy are symptoms that certainly could be associated with SLE, do you have any other symptoms besides the skin issues? Joint pain?

What treatment are you on for the DLE? I hope you get some answers soon and treatment that works for all your symptoms soon.

Welcome to the site!

 

[Clare.T]

hello Kelly and welcome to the forum
Maybe there is somebody here to whom this has happened although I can't think of anyone at the moment. But it is possible to have DLE and no bloodwork for an SLE diagnosis and still have a few systemic symptoms such as fatigue, some joint pain, maybe some anemia and some lung problems. Major stress certainly can cause flares.
There isn't necessarily a hard and fast line between skin lupus and SLE. even when there are criteria in tests that mean an SLE diagnosis would be valid. It doesn't necessarily mean you have organ involvement. All that might be needed is additional medication to get both skin and any other symptoms under control
It sounds as if you could already have had more medication these past two years to get the flare under control.

I'm not sure what you mean by your 'butterfly rash', not to be nitpicky. The butterfly rash refers to the sort of lupus skin that is associated with systemic disease and is quite different from discoid lupus which is never referred to as a butterfly rash even if it affects the cheeks and nose like the butterfly rash. It is possible to have both.

I hope the tests dont show anything of very serious concern and with enough of the right medications you'll soon be very much better in every way not just the skin. Please let us know how you get on

Good Luck
Clare

 

[Karly1964]

Welcome to the forum, sorry I am so late in greeting you, hope you find much support and caring here. Karly