Hi, I have just being diagnosed with dle. I know it's not systemic but I still haven't been told alot about lupas even my gp is not sure.

How to treat me as I have the lumps which I know will get worse and am told I have to have more blood tests dont know why. Has anybody figured out a way to stop the heat and itching, sorry it's a bit vague but any advice would be appreciated. .

[jilly60]

Hi I have sle and like you I've not been told hardly anything at all either off my gp or rheumatologist which is shocking really considering how much this disease affects every aspect of our lives I only joined this group about 10 days ago and have learned so much more than I've ever been told I too have the terrible heat constantly but so much worse in the warm weather I'd live to find relief from this and the constant scratching at itchy skin lets just hope someone on here can help take care x

[foxglove]

Hi golem, you don't say what age you are . I'm female .,age 74. I've had DLE since I was 13 (diagnosed at 17) so a long time ago Actually quite a lot of advice and help offered in the past, though I understand not so now. Regarding the heat good old fashioned calamine lotion works well - calamine cream if you want something less messy. Lumps eventually lessen and subside but can take a long time to do so

I'm replying mainly to reassure you that things do improve even if you do nothing. Main thing (hard!!!) is to not worry and of course VERY IMPOSTANT to use high protection sun care After all I'm still alive and kicking, well sort of, so can I wish you good luck?

[madmagz]

Hi Golem

I had DLE for years but am one of the very low percentage that can become SLE sufferers later on, don't panic though that percentage is very low something like 5% go on to develop SLE. I lived with the DLE using different steroid creams and scalp lotions for years, but as another fellow lupie stressed Sun protection is of vital importance. Also if you are photosensitive - made worse by ultra violet rays you will be affected by low energy light bulbs and florescent lighting too. This means you will need to protect your skin even inside if you go paces that use these sorts of lights. I wear a factor fifty sun cream at work as they have florescent lighting but at least the tubes are covered which cuts down the danger a little. When I am out of doors I wear gloves and scarf and something on my head at all times as well as long trousers and long sleeved tops, I never wear open shoes or show my skin unless it is dark. I used to be able to get sun block on prescription but unfortunately it is now classed as a cosmetic so this is not the case. I have a wonderful dermatologist who always gives me good advice when I need it.

I know the creams can be time consuming but it is well worth it, persevere.

Good luck

Madmagz x

[LupusAdmin3 LUPUS UK]

Hi golem,

If you think it would help, i can provide you with a small booklet on DLE as well as an information pack on lupus. Just send me a quick email or private message with your name and address and i'll pop one in the post for you. [e-mail]

If there is anything else i can do for you please do let me know.

Best wishes,

Hayley

LUPUS UK