I cant find anyone with this, without systemic involvement, even though I was ANA positive, and have a lot of the other symptoms of systemic lupus. I eventually got told by rheumy that I actually had fibromyalgia as well as cutaneous lupus. The main symptoms of the cutaneous side of things is my allergy to ultraviolet light. It was first thought I had polymorphic light eruption via a skin biopsy, but the UV chamber used to help try to 'desensitise' my skin, only made things worse! This miss diagnosis has made my skin worse than ever, and it now constantly stings if I am outside, and I get a nasty, itchy raised rash all over my upper body, but mainly on my face. I feel like a caged animal sometimes, always indoors with the curtains closed. Summer depresses me, and makes everything feel worse, so I do love it when it rains, hehe! I think I am the only one that does, lol!
I really would love to talk to people who understand, and people that care. And of course advice would be warmly welcomed :0)
Beks
Hi Becks.
I too have Lupus without the systemic problems. As you say it's the UV light which affects me. Factor 50 creams and cover up clothes and hat. Sunglasses even in the winter. I'm indoors with curtains drawn too. Another problem is the lethargy and I spend every afternoon in bed. I plan my days around my tiredness. How many other Lupus sufferers are like this?
Hi Shrop You are not alone. Fatigue is "the" number one symptom. Some patients find hydroxychloroquine (Plaquenil) helpful for fatigue.
There are clothes and hats that have a special property to keep out UV rays. Even on a dull day, the UV rays can be strong. Apart from rashes and itching, this can make you feel ill.
We have more information at the Lupus Message Board (see above).
With good wishes,
Ros
I do buy these clothes and am also on Quinoric. I still feel fatigue badly and have flare ups often - I use steroid cream probably 3 days a fortnight. Thanks for your advice I'm sure it will help others. Joan
my mums answer to the clothes problem was to buy me a pink burka... !! rather a cruel joke, so lucky I saw the funny side lol!