Negative blood results

[Rosalynng]

I'm new to this but a dermatologist thinks that I have cutaneous lupus. My skin is extremely sensitive to sunlight and comes out in raised up patches. Sunlight also seems to trigger lots of other lupus like symptoms - joint pain, tiredness, headaches - but my blood results for SLE are negative. My headaches do not respond to regular pain killers, but seem to respond to anti inflammatories. Is it possible to have lupus and negative blood results?

[Paul_Howard Partner LUPUS UK]

Hi Rosalynng ,

It is potentially possible to have SLE with negative blood results; this is generally referred to as seronegative lupus but it is not recognised by all consultants. In many cases, if you present with various symptoms of lupus but do not have sufficient clinical markers to confirm a diagnosis, you may be diagnosed with something along the lines of 'lupus-like disease', 'probable lupus', 'incomplete lupus' or undifferentiated connective tissue disease (UCTD). These are usually treated in the same way as lupus and may or may not go on to develop further symptoms and become 'full' lupus in the future.

Have you been started on any treatment?

If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download at lupusuk.org.uk/request-info...

If you would like more information about light sensitivity in lupus and tips for protecting yourself, please have a look at our article here - lupusuk.org.uk/coping-with-...

[Rosalynng in reply to Paul_Howard]

Thanks for that Paul.

I have been namelessly unwell for most of my adult life! And a systemic lupus diagnosis would make a lot of things make sense!

A couple of years ago added to all my various aches, pains, headaches, tiredness, skin problems (which I had self treated with high factor sun screen) and digestive issues I started to lose my eyebrows and hair around my hair line! A brilliant dermatologist diagnosed frontal fibrosing alopecia - a condition in which my immune system is attacking and destroying my hair follicles. He started me on a treatment of hydroxy chloroquine which not only slowed/stopped my hair loss but also seemed to considerably help my aches and pains.

Having stopped my hair loss the dermatologist reduced my medication. A holiday in Spain resulted in a really bad skin break out - even though I used high factor sun screen, a large hat and sunglasses. He has referred me to someone to see about my light sensitivity and has put my medication back up, and is suggesting cutaneous lupus. I just wonder if the bad headaches I still get, dry eyes, and occasional pain suggest a more systemic lupus - even though my bloods are negative.