LolaLola;511992 said:Hello, and welcome here. You will soon learn a lot. Is there anything in particular e can do for you?
CDLE is chronical discoid LE.I don't have SLEClare.T;512001 said:A warm welcome to the forum !
We have a few members living in Europe including Holland so maybe you'll be hearing from them.
Perhaps you could clear up what you mean by CDLE ? DLE might stand for discoid LE and CDLE might stand for Chronic DLE . I am guessing that the Dutch is much the same as the German but the terminology is a bit different in English . Not that it matters much so long as everybody knows what we're talking about!
There are a few people here who suffer from Discoid Lupus either without any systemic involvement at all or with varying degrees of systemic involvement.
A few also have a diagnosis of SLE.
From what you say in another post, it sounds as if you do have some symptoms that could suggest some degree of systemic disease even if it isn't full blown and even if it doesn't show up in blood tests. I'll talk about that in reply to that post.
I hope you will feel free to talk about your lupus and how it affects you even though there are some very ill people here. I understand entirely how you feel, but I see it as us being in different cabins of the same boat with the same destination namely to find help: the right medicines and knowing that there are people who understand and will encourage & support you in your efforts to have a better quality of live. Skin lupus isn't going to kill anybody but it can ruin lives and cause immense emotional suffering.
I hope you'll find the forum really helpful.
Bye for now
A few people with DLE have other symptoms of lupus although the skin remains the main organ affected and even if there is no blood work to suggest systemic disease. They would not be formally diagnosed with SLE because they don't have sufficient criteria for an SLE diagnosis.Yes, I was wondering if there are people here on the forum with only CDLE, and have symptomes like being tired, dizzyness, sore bones and raynaud?
Clare.T;512030 said:Hello again
A few people with DLE have other symptoms of lupus although the skin remains the main organ affected and even if there is no blood work to suggest systemic disease. They would not be formally diagnosed with SLE because they don't have sufficient criteria for an SLE diagnosis.
The sorts of symptoms they might have are fatigue, joint aches and pains, anemia, a degree of lung and heart involvement in that order.
How is your discoid lupus being treated ? Successful treatment of the skin lupus often brings relief to any other symptoms.
I suppose you do have regular check ups, blood work and urine, to make sure there are no signs of disease worsening.
A lot of people here have Raynaud's secondary to their lupus or whatever similar sort of connective tissue disease they have been diagnosed with.
It is so common in lupus that it is one of the ACR Lupus Classification Criteria. ( Symptoms that would lend weight to an SLE diagnosis)
Good Luck !