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Hi all,

I am from Holland and been diagnosed with CDLE since 2001.
Hoping to learn more here, since the info on lupus in holland is a bit limited:)
 

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Hello Vlinder and welcome :)

As you can see, I'm living in Belgium even if I'm originally Irish.

It's true that it is rather hard to get information or support over here. I'm sure you'll find this site very useful and informative.

hope to hear more from you soon,
Katharine
 

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LolaLola;511992 said:
Hello, and welcome here. You will soon learn a lot. Is there anything in particular e can do for you?
x Lola

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?
 

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all of those

Hi vlinder. i have never know anyone from Holland. and i love flowers.yes i have all of those feeling and sometime they are a ------. but this is a great site for information chatting having fun and venting when ever you like. os again welcome and email me anytime. i have alot of it. oh i have had lupus lets see now 23 yrs now and i still going strong atleast that what i tell myself:) looking forward to chatting with you more take care sue from illinois USA
 

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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 :)

Clare
 

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Hi Vlinder,
welcome nice to meet you.

I am not a long term memeber yet but just wanted to say that i hope this site helps you which i am sur eit will.
Everyone is so great, knowledgable and helpful.

Good Luck

Cassie
 

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Clare.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 :)

Clare
CDLE is chronical discoid LE.I don't have SLE
 

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Hello again :)

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?
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 !
Clare
 

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Discussion Starter #10
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 !
Clare

I am on Plaquenil 200 mg a day.
My white bloodcellcount is ok now though my red bloodcellcount is a bit low.
I have regular check ups and can always call my dermy when needed.
I have a sunblock he gave me wich works very well but I try to stay out off the sun as much as possible.
 

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Hi and :welcome:

Do you think that the 200mg of Plaquenil is enough for you, many people take twice that much to help control the disease.

I notice you see a Dermatologist and I was wondering if they run blood tests regularly as well as check your urine for signs of worsening disease?

A small percentage of DLE patients can progress to SLE. Some of your recent posts suggest that things are not well for you right now and that you have a lot going on. It might be time to make sure that DLE is all you have.

love
Lily
 

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I was on 400 mg plaq a day for 4 months.Whitebloodcells are oke again so he put me on 200mg.Now however my redbloodcells are very low but no action is taken for that.
 

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Hi Vlinder,

I wonder if it would be a good idea for you to see a rheumatologist to get an assessment of where you are at. You have a number of symptoms which might suggest systemic LE, such as the anaemia and balance problems, raynauds and achiness. Also this would be a chance to check on your medications - maybe it is time to step up the doseage or to add a new med.

My rheumatologist is very good with autoimmune diseases. If you want his details, just PM me.

X C X
 
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