My dr is convinced this is my diagnosis even tho my biopsy says jessners. Do anyone have any advice about the attractive rash that at the mo covers 1 half of my face & now my arms? It burns & on occaisions itches beyond belief !! I have more creams & ointments than boots but none really seem to help.
Thanx
Hi frankie1. Has your doctor not advised you what to use for the rash?
I am a DLE sufferer, and find an antihistamine cream helps with the itch. Your doctor ''should'' be able to advise you better. Saying that, my doctor seems to only listen when i stamp my feet really hard and threaten to chain myself to his surgery door !!! Ask your doctor and do not leave his surgery nodding and agreeing if your not satisfied... It does not help you at all.... Remember its YOU that suffers not him !! Good Luck x
I've never thought of an antihistamine cream, thanx. My Drs are really good & I do have a cream 4 every occaision. None really seem 2 have much effect & I'm thinking maybe just let it run it's "flare up" course ! It was only on my face, neck & ear but now has spread to my fore arms....always an attractive look !! I'm waiting for biopsies to be done on them. At the mo my face isn't to bad, after a year I just have 2 small areas that just won't heal. I'm really fed up now as I'd like to get back to wearing makeup but I'm to frightened to In case it triggers it off again. I was told on my last hospital visit to avoid sunlight. I am a bit of a sun lover & was looking forward to my holiday lying on a sunbed reading. Obviously this year it'll have to be in the shade !!
Hi Frankie,
I have SLE but have just got over a severe case of discord lupus which lasted approx 3mths. The problem with the face is that a lot of creams used to treat the skin have steroids in them; and as the skin on the face is quite thin it can actually peel the skin off. My face was affected too but I just had to let it run its course. Although it has cleared I have been left with dark scarring on my face but i'm able to disguise this with make-up. The rest of my body that was affected have also been left with dark scaring which I am quite concious about. However I am glad the sores have gone but I do persistently itch. The cream that worked well for me was ELOCON cream.
All the best
I was diagnosed with Discod Lupus at the begining of last year, the rashes are a total nightmare and you have my full sympathy as I suffer daily from small ones to all over ones!! They do itch insanely, I am still trying to get mine under control and they are getting better but then anything can trigger them off from food to just getting too hot! I have found that daily antihistamine is a pretty good control also moisturising every day to stop the skin getting dry, I use Cetriban and I wash with Aqueous cream. I have the butterfly rash on the face, only one side!! but manage to keep that under control with the steriod cream used sparingly, I also have scarring alopiciea on my head, all down the parting and on the crown which again is controlled with steriod lotion. The reason I use the steroids is because I was on Hydroxychloriquine but I told my consultant that I wanted to come off it as I felt that the rashes were harder to control when I was taking it. (she says while scratching at her neck which has come up in bumps the last couple of days). I have also kept a photo diary of my rashes, and where they appear and started writing down what I had eaten or what the circumstances were, i.e weather, heat etc. This is to try and find a pattern, I live in hope :).
Hi
ELOCON is the best for me. It has steroid in it and it is very greasy( which led to me getting lots of white heads and pimples on my face) but acne cream from my dermatologist soon sorted that out) but it works so well it is worth it.
You must stay out of the sun, wear sunlotion, sunglasses and a hat if you have to be outside. I was also given a tinted sun block for my face by my dermatologist.
Sweating can also make the itching worse.
Following all my doctors advice means I now have my rash under control and feel much better about myself.
I have suffered with DLE since about 2005! It has and still is hard to keep track with it, as it flares up on a whim! The golden rules I have lived by are, Staying out of sunlight.... It's really not worth it.....Keep up with Dermy appointments.... Your body changes, so medications will change over the years. Eat well.... And keep your stress levels as low as possible... Though we all know how hard that can be! Also keep up with your blood tests..... These are important, especially when taking Mepacrin, Plaquinil, an anti rejection drugs....! X. Just look after yourselfs.... Listen to your body.... If you feel something isn't right.... Talk louder until someone listens!! Xxxxxx
Oh.... I refuse to use steroid creams due to the adverse effects... And they don't work for me personally. I use Alo Vera gel 99.9%... It helps keep the skin cool.... I was drinking the juice aswell, it helped , olive oil to moisturise, and 50spf sunblock every day!! I'm currently off all drugs as I'm in despute with the docs on wether I'm crossing over to SLE.... Long story.... Plus I've had to give up my job of 6yrs.... Due to side effects and other ailments I have.... Want to know if it's all connected!
Apart from that.... I do have a life! Lolx just take your time.... And look after yourself! Xxx
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