[deehambley]

Hi everyone i am new to this and am hoping to be able to understand DLE better i was diagnosed when i was pregnant with my now 3 and a half year old daughter and am only really now coming to understand a bit about it..I also was diagnosed with retinitus pigmentosa 2 years ago (not related) so I have had to understand too much and have to be honest switched off to it all! I am now finding it I constantly feel lately ill or tired or low or achy or all of it :wink2: and have been told it could be lupus related and as i have only ever read that DLE only affects the skin (i do have a mild amount on my face mostly under control, i know i am lucky). I was told this by a lupus specialist nurse so it must be true lol and decided maybe it would be a good time to understand it all a bit more and what i should be or not be doing to help! I was hoping this maybe a way of answering the millions of questions now flying around my head!!!
anyway hope i didn't bore/depress you if you read this but HELLO to you anyway :hehe:

 

[LolaLola]

Hello Dee,
Sorry to hear about the DLE and Retinitis Pigmentosa.
First question, are you taking good precautions in the sun? I expect this has been explained to you but it is very important all year round.
x Lola

 

[Maia]

DLE can and does "progress" to SLE about 10% of the time, if I'm remembering the statistics correctly. So if you continue to feel ill and tired, with achy joints or any of the other symptoms of systemic lupus, I would definitely recommend you talk to a rheumatologist about your concerns and undergo further testing and continued monitoring for possible SLE. This would include a thorough history, physical exam, blood and urine tests.

It's nice to meet you and I hope you get to feeling better soon, whatever the cause.

 

[Clare.T]

Welcome to the forum

DLE can be the first sign of more systemic involvement, at any stage, although the longer the lupus has been confined to the skin the less likely it is to 'morph' into other forms of disease expression.
Don't go assuming the worst. DLE can be associated with fatigue, joint aches and pains, anemia and heart or lung involvement such as pleurisy even without any antibodies detected in the blood. There are not necessarily hard and fast dividing lines. The sort of lupus a person has depends on how it is affecting them. If it is only the skin, it is only the skin. DLE is not usually associated with systemic disease but that is only a statistic.
Some specialists think that there is no worsening, it's more that the person wasn't thoroughly checked for signs of systemic disease when the DLE was diagnosed.

The first thing to do if you are not already under a consultant's care is to see your GP and ask for a full blood count, an ANA test and a urine test
You might also ask for thyroid and B12, explaining that you think the DLE might be worsening despite the skin not being too bad.
The important thing is to determine if these symptoms are probably due to lupus and not other diseases.
If there is nothing major like kidney disease involved then Plaquenil ( hydroxychloroquine ) can often take care of it and stop the disease developing.
Don't worry about not having taken much notice before. These things happen and it is easy to blame oneself in retrospect. The important thing now is not to neglect your health and get some answers. You know that you are unwell whatever the cause

Saying that DLE only ever affects the skin isn't helpful because it is not entirely true. A lupus nurse really should know better.


Anybody with skin lupus who has symptoms which could be extending disease is well advised to be checked out further. People who have skin lupus should be regularly checked for signs of worsening disease even if there are no obvious symptoms. Kidney involvement can only be detected by blood and urine tests - it is not felt by the patient until it is advanced.

Let us know how you get on and best of luck.

Bye for now
Clare

 

[Primrose1960]

I also have DLE

I also have DLE on my scalp, have been attending a dermotoligist and have been on plaquinel for 2 months.

I also suffer from anemia joint pain in elbows, fingers and back pain I also have a lot of hair loss.

I am awaiting apointment with rheumatologist in April, and hopefully he will be able to confirm whether there is further involvement than DLE.

I have to thank Clare:wink2: for your informative and helpfull message, it puts my mind at ease and I will try and stay a bit more positive about my situation and not jump to conclusions without a diagnose from a specialist.

I also have an underactive thyroid and anemia which I beleive can cause hair loss and joint pain. I cant wait to get to the bottom of the mystery myself and by the way the pain in my fingers seem to be easing, this week after being on plaquinel for two months.

 

[deehambley]

Thank you to all that have replied and Clare your information is very helpful. I will have to ring the hospital on monday. I am under a consultant who i only see once a year unless i feel that it is worsening (his words) which of course being new i never really know if its worse as i only have ever thought it was just the skin and never thought the fact that i often have all these other things going on could even be remotely related. have never been asked and tend to not say anything to anyone as i dont like to be seen to be moaning about everything because i get the joke of being called a hypochondriac! (I can't help but feel like maybe I am sometimes to be honest!),

I have had so many silly things go wrong that i end up in hospital on a quite regular basis!! (usualy from weak ankles giving way on the stairs lol) or a shoulder joint problem that i had from an old injury lol so as i am often a little accident prone especially lately people tend to take the mick a bit! I had a patch on my head which left me a tiny bald patch (not really noticeable and the hairdresser says i have a little regrowth in it to!).

I have always been careful in the sun because i am very fair skinned and blonde but never thought to cover my head as i have loads of hair but of course i didnt think about my parting!!! Nor my ears i often forget about them (there is lupus in them to lucky me lol), I do now use a daily high factor cream clinique do which is fab plus my make up has sun factor which is an extra protection. I hate feeling i have to wear makeup as i never really was one to wear much i always USED to have great skin never really got many spots etc i never realised how lucky i was!

My biggest issue i suppose is maybe i have been a little lax witht he hospital as originally i was told by my consultant after a blood test it was only skin lupus and that he would prescribe me a cream to apply when required (never understood that properly lol) and to ring if i feel its worsening and to make another appointment. Needless to say i left it nearly 18 months before thinking i had another patch develop so i rung the hospital who told me i had been taken off the list and would need to go through the whole waiting game again! I did manage to resolve it that time but i now have to make an appointment once a year for a 'check up' in which he says hows the skin and gives me the latest creams checks the size of my abrasions and sends me on my way i wonder now if i should have been asked more?

I guess i also assumed that unless skin gets worse i dont need to go back except yearly..again not realising there can be other symptoms related..I have had trigeminal neuralgia diagnosed by the doctor this year should i be mentioning that to?! i am so confused now as to what i should be telling them! :worried:

 

[ladycarter]

DLE and pain

Hey, I am still new to this group, but I saw this post and just felt, I had to respond. I was diagnosed with severe DLE in 1997, I had the butterfly rash, and lesions on my face and neck, that appeared, a couple of days after a deprovera shot (birth control) right around, my 35th birthday, of course at the time, everyone thought I was having an allergic reaction to the shot.
Almost a year later, I was finally diagnosed, through a scalp biopsy, as the lesions had spread to my head, and I worked in an office with flouresent lighting directly over my desk, I lost my job when I began to hurt, all over, and get extremely tired, I had no insurance, and didn't get very good care, but I was eventually, diagnosed with severe DLE, with Fibromaygia, chronic fatigue, and raynauds disease. Of course, due to my ignorance, and financial situation, a lot more permanant damage was done, and my head has very disfiguring, scarring, and permanant, baldness, Hope, you do not have to have this happen to you, I wish I had, had a group like this to heve helped me. Just avoid as much sun and uv lighting as you can, and you might want to ask you doc. to do the fibromaylgia point test, Lots and Lots! of luck to you!!!!! Tish