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
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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.
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 .
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.
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?
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-...
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,
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.
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.
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
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
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.
ANA and anti-dsDNA as ANA is weak Positive and anti-dsDNA is normal
Photosensitivity,rash on face and ears at times and blisters on fingers,
with Anti-RNP positive..... so i only have a few clinical markers in Criteria and was told less likely to be SLE more like DLE(but Biopsy was inconclusive) the Dermatologist said she came to this conclusion running the results past a Reumatologist .I have the blood test results but was told that the
other tests results of ANA etc are complex for me to understand so wasn't given them, still i would like them as they are my results to show any other doctor.
Two Reumatologists i contacted in America have explained Might consider SLE or overlap syndrome or both from my results.
And that The positive RNP can be seen in Mixed Connective Tissue Disease which can be associated with a positive ANA.
So this is totally different to the UK Dermatologist Consultants
You are entitled to a copy of your own blood test results if you request them, although sometimes you may have to pay an administrative charge to have them printed for you.
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.
Hope you are well i thought good idea to post my results
for others on the forum which may be helpful..
Had the recent result from Biopsy and the
Consultant explained after tests
ANA weakly positive
Anti-dsDNA Normal
ENA -R positive
Anti-RNP positive
Have photosensitivty ,rash out of 11 criteria.
Red Blood Cells a bit smaller which is in family genes in sister blood tests too.Also found have Thalassaemie trait picked up in FBC .My iron has improved from 12 ug/L to 73 range 12-250 ug/L from 1 half months.
C -Reactive Protein <1 mg/L range 0-7
Dermatology Consultant has shown all the results to Consultant Rheumatologist and says due to weak ANA
positive test result are inconlusive although likely to be DLE
from Biopsy and
affecting the skin in a general condition from the head down.Less likely to be SLE.
Although have the Blood test copies have also
requested the ANA etc tests to keep.
MCV and MCH blood tests because of small red blood cells will always
be under low range .(Normal for me)
have blood test FBC again in 3 months and follow
and each year and follow up with Dermatology Consultant
in 6 months.
Have had these symptoms since 2013 almost 4 years.
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