Hi everyone, I was diagnosed with lupus just before christmas following a biopsy. I am new to this and havent spoken to anyone else with the condition so am at a loss. My face is constantly covered in blotches some of which have scarred. I'm currently taking hydroxychloroquine and also using a steroid cream but nothing seems to shift it. As you can imagine with it being on my face I am constantly paranoid and it gets me down. Does anyone have any advice or suggestions? I recently went to portugal for 2 weeks stayed in the shade and my face seemed to improve but since I've been back its just got worse and worse which seems strange.. Any advice appreciated.
Thanks
Steph
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steffie_steph03
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I'm glad you found this site, the people on here are lovely and vary greatly with age and experience - but we all know what it's like to have lupus! Regarding the blotchiness, I can understand why it upsets you. Do you only use steroid cream on your face? Are there any other creams that you use? Anything from face wipes, cleansers, face wash, moisturisers, make up etc can all make your skin worse. If it's just the steroid cream you use and nothing else, then I'm afraid I don't know. But if you use anything else on your face, then stop using it and only use natural products. You can make your own moisturisers or use pure oils to calm the redness. It's unbelieveable the amount of crap they put in skincare products, so be careful. I'm wishing you better health and happiness,
Make a list of specific queries to ask your specialist at next visit. Are you compliant with your sunscreen & other sun/light protection? It will take some months for your meds to really kick in. Best Wishes to you; its a very steep learning curve. Kaz x
This is a classic butterfly facial rash which is one of the most common symptoms of lupus. The easiest way to treat it without going to your doctor if you use an eczema cream such as E45. If this does not work go to your doctor and he put can prescribe something a bit stronger. I've lived with lupus 432 years my rash comes and goes. A good way to get less rash is also to stay out of the sun at peak times and always use factor 50 sun cream. Hope this helps
Welcome to the LUPUS UK community here on HealthUnlocked, i hope that you will find the forum helpful.
Would you like to receive one of our free information packs? Inside the pack you will find a copy of our 'News & Views' magazine which features news on our regional groups activities, stories from our members and news on any new medical findings. Also, on the very last page, there's a list of our contacts who are available as somebody to talk to, as they themselves live with lupus. I will also pop in our booklet 'Lupus and the Skin' for you too.
Just let me know your address by sending me either a private message or an email, and i will arrange for one to be posted out to you. hayley@lupusuk.org.uk
Unfortunately due to high postage costs we are unable to send our information packs overseas. However, you can download a digital copy of the pack from our website here - lupusuk.org.uk/want-to-know...
Hi Steffie! I'm also newly diagnosed with discoid lupus - 2 months ago, after a biopsy, all my blood tests were perfect. While I was waiting for my biopsy results, totally not believing it could be lupus (due to the blood tests) and not getting any treatment (not even sun screen) I got the most horrible face rash. It wasn't the butterfly rash... my face & neck covered in red blotches that kept growing, swelling, itching, burning, hurting... Until there was virtually no normal skin anywhere on my face & neck. It looked and felt as if something was eating out my formerly pretty face. I was, to put it mildy, terrified. So I went back to my dermatologist... the same one whose treatment I refused to take :)). She put me on systemic steroids and plaquenil and told me it could take a few days for them to take effect, but assured me it was all reversible. For a few days I was on a pretty high dose of medrol and half dose of plaquenil for a week and virtually nothing seemed to happen. And suddenly... after 1 week... the rash started to fade away. 2 more days and my face was as good as new. And 1 more week later, the skin on my face was better than my 4 year old daughter's :)). Unfortunately, it started getting back to normal once I was off the steroids, but they definitely got me out of a horrible situation.
What I'm trying to say with this looong story is that even the most agressive skin involvment in lupus is very likely reversible. I'm not familiar with the procedures and drugs in your part of the world (I am from Romania), but here the doctors prescribe sistemic steroids (like medrol or prednisone) in severe cases if the topic steroids (creams) don't work. Perhaps you could suggest this to your doctor?
And in the meantime, try to be positive. I know it's hard, I've been there. But I also know from experience it will be ok!
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