DLE

Hi to the Community,

I am a SE Asian Female  with  Tanned Skin i was originally diagnosed by a few different doctors in the UK with Topical Dermatitis. I Recently saw a Dermatologist as  had  Red patch Rashes with a brown background with tiny black spots in Both ears in two places for about a year which is very itchy also around the scalp with a slight hair loss each day but not bald patches hair seems to grow back. Had the Blood Test  and  Urine Test Results which were Both Fine the Dermatologist explained and Suspects DLE .I still need to get a Biopsy of the skin .Would both  Blood test and Urine test possibly rule out SLE ?

Thank-you for any opinion

25 Replies

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  • Blood and urine tests may suggest that it is not SLE, but this would depend on what blood tests were carried out. Even with all the correct tests they may not be 100% accurate and may not identify cases of sero-negative SLE. An accurate diagnosis will be made from a combination of your symptoms and any clinical markers found in tests.

    If you would like more information about lupus and DLE, please send me a private message or email paul@lupusuk.org.uk with your name and address and I'll put a pack in the post for you. 

  • Dear Paul Howard

     thank-you for providing your kind concise reply to

    my Question.

  • Hi Paul Howard you very kindly replied to my post about 2 months ago.

    I am from the UK I was asking how precise the test were in my visit to a Dermatology was.

    I originally went to see the Dermatology in Bangkok Middle of March,I would like to ask you at the time i was worried about scarring as the doctor

    in Thailand where i am at the moment, (which has been incredibly hot 39c ),

    The area for Biopsy was just over the top of my eyebrow close to my hair line also affected was inside both ears which they advised could not be biopsied.

    I declined at the time and will be back in the UK in 3 weeks time firstly scarring as well to the clinical setting but may not of been a problem at this Government Hospital,The GP in UK advised it could be a 12 week wait to see a Dermatologist after an email.Last time i had Urine Test CBC all were good ranges including red and white blood cells i was told by the Doctor she suspected DLE .I was wondering they left out an the Antibody Test .At the moment my BCG on my shoulder , i had 20yrs ago, has become itchy very red and sore and more raised.Would it be related to Dermatology

    DLE etc?I have heard you can get a steroid injection to stop this.

    Also the steriod cream has worked up to know and cleared all the lesions up

    but for a week or so after some stress it has reappeared itchy red and dry in both ears again(but i am in an out of Aircon and had some extreme hot weather here too at times up to 39c)also had some small blister itchy on tips of Finger but again could be due to hand washing !

    Would you consider i go back to Dermatology in Bangkok and ask for the

    Anti-body Test and Anti-dsDNA test and wait for result and then get Biopsy in the UK ?

    Antinuclear Antibodies (ANA) is obviously a different test to CBC and i was not tested before.

    would the ANA Test be of significant use for diagnosing DLE or SLE?

    I have noticed of the 11 SLE criteria, from the Lupus Research Institute:

    I only match 2 ,

    !.Discoid (skin) rash: raised red patches...... (Yes)

    2.Photosensitivity: skin rash as result of unusual reaction to sunlight ......(Maybe)

    Some hair loss but but been like that for over 10 yrs now not alopecia though don't loose that much each day, and no bald spots, could be Vitamin issue.

    I would be interested in your kind professional advice .

    Thank-you for all your time and help

    Regards

    Advice1

  • Hi Advice1,

    ANA and anti-dsDNA are important clinical markers for the diagnosis of lupus and so having these tests done would be worthwhile. Your GP may be able to do these for you if you ask? If the test results for these are positive, then a consultant may be satisfied with the evidence and diagnose you without needing to have a biopsy.

    Steroids can be used to treat lupus rashes and are often very effective, but they should only be used to treat flares for a short duration. They can damage the skin if used extensively so another longer-term solution may be needed to keep the symptoms under control once you have a diagnosis.

  • Hi Paul Howard

    thank-you for taking time to advice me on this

    your advice is most appreciated too.

  • Hi Paul Howard

    its been a while

    but am now back in the UK have a wait of 2 months on the GP referral to Dermatology and still

    get the itching inside and outside ears which do wake me up and do get me done as itching seems worse than pain.Have taken antihistimine which didnt do much for me.Would you suggest going for the ANA test you suggest while i wait for UK referral?

    Haven't been able to find anthing

    that works for the itching so far!

    thanks.

  • Hi Advice1,

    I don't see any harm in getting a blood test for ANA while you are waiting for your dermatology appointment. The extra information will hopefully help them reach a diagnosis.

    It may be worth phoning the consultant's secretary on a regular basis to see if there have been any cancelled appointments and whether they will be able to see you earlier than two months.

    I'm sorry to hear that you are having a problem with itching. This blog article we wrote may be helpful for you - lupusuk.org.uk/coping-with-...

  • Hi Paul howard,

    thanks for taking the time to reply and also for your advice

    and thanks for the link which has some good points that

    i could try out. I did have Malaria as a child twice ,

    one of which was a very bad case too,so i am not really sure

    if i could take Malaria Tablets now if it came to it, but would have to speak to GP.

    Thanks for your kind help.

  • Hi Paul Howard,

    thank you very much for your support and your idea to call or email the secretary actually worked so instead have waiting 2 mths

    i will be seen and have an appointment from a cancellation in 3 weeks so thank you i am very grateful for your kindness doing a great job for members on the forum,

    Good Luck.

  • That's great news! I'm glad they were able to find you an earlier appointment. Let us know how you get on.

  • Hi Paul Howard.

    I Had the Dermatology appointment

    The Dermatologist looked at Hair Folicals Ear Rash and looked in mouth no ulcers checked fingers too sometimes Fingers are affected too.Made an appointment for Test FBC which included ANA and a Biopsy in a month time.I contacted for the result and the Nurse Explained the Biopsy can be cancelled as the Result is DLE and no further tests will be needed.And an appointment will follow shortly to explain this outcome.I haven't seen a copy yet of the FBC and ANA but am asumming the ANA is Negative and normal blood test and they maybe going by clinical findings like the Ear Rash

    Also would i be right in saying that Hospital Dermatology will not do a DNA /dSDNA

    Anti-double

    stranded DNA As in keeping with current evidence based guidelines :Antibodies to DNA and ENA antigens will not be performed on Sera that are Negative for ANA.

    The only criteria i seem to have out of 11 criteria for SLE

    Is Ear Rash( no molar rash) and Photosensitivity, i feel quite normal and healthy no joint pain or arthritus .

    The steroid cream Dermatology gave seems to be stopping the itching and now the flare up has stopped and no itching and feel more relaxed from this.

    so i was wondering your view on these findings.

    Thank you for you kind support and help you have provided which is much apprecited.

  • Hi Advice1,

    If the dermatologist has confirmed DLE and you are experiencing just involvement with your skin and hair and not any more general symptoms then it would suggest that (at least at this point) you do not have SLE.

    If you experience any further symptoms in the future that concern you then it is worth mentioning them to your doctor and they may want to do some further tests.

    I'm glad that the steroid cream has helped to control your flare. Have you been put on any other treatment or are you just using the steroid cream for the time being?

    If you would like an information pack about DLE, please send me a private message or email paul@lupusuk.org.uk with your name and address.

  • Hi Paul Howard

    Thank you for your kind reply and advice .The only treatment is Steroid Cream .The Dermatology steroid cream is stronger at 0.5 than GP'S 0.1

    treatment for Eczma!

    Had flares since 2013 and in that time out of seeing 5 GP'S all would test me with steriods that didn't work for 3 weeks at a time but none of them referred me to Dermatology this really should of happened after the first 3 weeks They only say its very confusing for GP's and close. ranks but that is not the point , point being they should follow the guidelines and refer to A Dermatologist who is experienced in this field.Early as possible but patients don't always know pathway Guidelines.

    Much appreciated to you for your time advive and support

    Good Luck

  • Hi Paul Howard ,

    just wanted to mention to be very careful with dealing with some departments of Dermatology

    on results especialy as after a nurse phoned me back and said no more tests are needed and DLE is diagnosed

    from blood tests so no Biopsy is Needed and no further test are required.

    So after a phone call from Dermatology for a biopsy appointment i asked if it needs to be cancelled but this caller said the Consultant wants Biopsy to go ahead as i was told i was given wrong information on the phone call from a Dermatology Nurse who was looking at the screen of my records and told me to opposite advice. Get things in writing and do not trust anything from a phone call.Always ask the name

    and note time of call.

  • Hi Advice1. Have you made an official report/complaint about this?

  • Hi Paul Howard ,

    Thanks for your reply i think that is a very good idea ,how would i do i do that?

  • You can usually do this through the hospital's PALS team. You can find them here - nhs.uk/Service-Search/Patie...

  • Hi Paul Thank-you for your kind help

    i will follow your kind link to make the complaint

    Thanks for your help.

    Best wishes

  • Thank you Paul for the quick response

    I have complained througth PALS as it's beyond belief how some departments in the NHS act with sensitive information and are not following

    protocol.

  • Hi Paul ,

    I followed your kind advice and P.A.L.S have

    Forwarded the complaint to the Dermatology Manager .That was very helpful of you to

    suggest that route P.A.L.S are very helpful and quick to respond too.(like Yourself)

    BTW ,can you get a copy of blood test result for DLE test prior to seeing a consultant.

    As the original test was mid Nov 2016 .

    And because of the mix up from the Nurse

    i didn't think i would need to go to the Biopsy appointment because i have other commitments

    on the day in Jan and now have cancelled it through P.A.L.S with an arrangement of a new one through the Dermatology Manager.(although

    i should of been going to this appointment were it not for the confusion from the Nurse that phoned and caused all this.

    Thank-you very much Paul

    For your kind help.

  • Hi Advice1,

    I'm pleased to hear that PALS were helpful and have passed along the complain to the correct person. I hope that it is well addressed so that something like this doesn't happen in the future.

    Your GP practice should have copies of all of your blood test results. You should be able to request a copy from them - although sometimes you do unfortunately have to pay for this service.

  • Hi Paul

    Very pleased with NHS PALS help They generously

    complained

    on my behalf and on the same day the consultant contacted me and apologised and explained

    the real result of which i appreciate.

    and PALS got a new Appointment for me through them for a Biopsy so as not to have any other confusion with a paper trail.

    Thanks again for your reply

  • That's really great to hear. I'm glad that they were able to help resolve your problem.

  • Hi Paul Howard

    just to add i recently saw an article from Lupus international possibly BMJ from this link lupusbeta.bmj.com/content/3...

    It states that up to 28% of DLE

    Patients progress to SLE

    and has a controlled study of 142 people .It seems a lot higher

    than the 5% and also 10% of DLE patients that progress to SLE that most

    Dermatologist state.I was wondering your thoughts on

    these percentages.

    Thanks for you help.

  • Hi Advice1,

    I'm not medical expert, so I cannot give an expert's opinion about this. I'm not sure from what evidence source they obtained the figure of 28%. It is likely that different studies will find different percentages depending on the population studied.

    The Lupus Encyclopedia says;

    "The question always arises about the chances of developing the systemic form of lupus once you have developed the discoid form. Although some medical experts have said that 10% of DLE patients will go on to develop SLE, this figure may be too low. A recent report from Sweden showed that women who had DLE had a 20% chance of developing SLE within three years after the first diagnosis of discoid lupus."

    I'm afraid I don't have anything further that I can say on this at the moment. Our understanding and knowledge of lupus is improving over time as more of these types of studies are carried out. Over time we should find a truer figure and hopefully the reasons why.

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