cutaneous lupus erythematosus

Hi have just recieved my results back from a skin biopsy I had which suggests I have cutaneous lupus erythematosus. I have a appointment with the dermatologist next week to speak about my results but wondering if anyone else has the same as me? I have searched the internet for information but and it seems there is alot of different forms of lupus?

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  • Hi MariaSkoof,

    Would it help if i sent you an information pack on lupus? I will also include our booklet on 'Lupus and the Skin' which explains in detail on the different types of lupus that can effect the skin. Just send me a quick private message or an email with your address and i will pop one in the post for you. hayley@lupusuk.org.uk

    Best wishes,

    Hayley

    LUPUS UK

  • For many years my Lupus only affected my skin. I have a fab collection of parasols and floppy hats, factor 50 sun cream and cotton scarves. The watch word is cover up!

  • Hello MariaSkoof. I have Subacute Cutaneous Lupus (SCLE) which is a sub group of Discoid Lupus (DLE) and Systemic Lupus (SLE). Following a half hour appointment with a private doctor who told me I had the skin lupus (using GP's blood tests and a physical exam) and gave me a prescription for 400mg hydroxy a day, I then went back onto the NHS waiting list. The NHS Rheumatologist was way more thorough and carried out numerous tests. Anyway, she told me I actually had Subacute Cutaneous Lupus and explained a little bit. I have skin problems but also more than 4 systemic symptoms, but it has not effected my internal organs. I have had to do the rest, by reading posts on here and getting books from Lupus UK and WHSmith etc. There seems to be less written on Discoid Lupus than Systemic Lupus and even less on SCLE. It seems that you are being referred to the Dermatologist very quickly and hopefully he will be able to give you good treatment and advice on managing your symptoms. I have learnt this summer that I must cover every part of my body, either with clothing or sun cream, sunglasses and a hat. I have worn long skirts or dresses, or trousers with a long sleeved cotton shirt. Dark colours seem better than pale colours or white. I read on here somewhere, if you hold the clothing up and you can see light through it, it wont protect you enough. It is hard, as you are over dressed for the heat and get uncomfortable, but needs must. Some people are so sun sensitive that they cannot go out during the day, or at least between 10-2pm when the sun is at it's strongest. So I consider myself to be lucky that I am not that sensitive. I have noticed that when I have forgotten my hat on a sunny day, I have had more little sores appear on my head along with the hair loss - so I apply my steroid cream quickly to stop that getting worse. I have also started to order the Sun Sense 50+ sun cream that is matt and tinted from Amazon, as a make up base for my face,as I found the one prescribed by my GP makes my face look even whiter and is too greasy as a make up base. Anyway, I could go on for ever. If you want to ask me any questions feel free to message me or ask on here. Good luck and best wishes! Wendy

  • Hi wendy, i get my sunsense 50factor tinted from my GP ask yours too. Saves you buying it if you can get it free from your GP. Good luck. :-) x

  • Hello, a skin biopsy on a troublesome sore patch on my head first confirmed discoid lupus or lupus of the skin as the dermatologist explained. But very quickly afterwards, my health deteriorated and I had other complications. My skin has not been normal ever since. I've had the lupus butterfly rash, but also had some horrific episodes when I've been covered in a terrible red rash from head to toe. I did not venture out for one month except for hospital appointments when my face looked as if someone had thrown acid at me. At times I was shedding skin at an incredible rate all over. My bed was like a sandpit. I was told my skin was dying and growing back at an accelerated rate every few days, rather than weeks as it should. And two years ago all my skin fell off and I ended up in hospital for nearly two weeks. That was put down to a toxic reaction probably to the medication. I've had a further three skin biopsies on one arm and one leg. These later biopsies did not show discoid lupus, or anything. The dermatologist admitted he wasn't sure what was going on, but it seemed I was reacting very badly to medication. I've been prescribed prednisolone, hydroxychloroquine, thalidomide, chloroquine sulphate, mycophenolate, acitretin, and antihistamines such as atarax and cetirizine. Nothing seemed to work. Latest suspicion is that I may have developed psoriasis. See what your dermatologist says. We're all different. Fingers crossed.

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