Tips on how to treat and prevent malar rash

[Ziggidy]

Hi,

I am currently dealing with my fifth malar flare since September. They're quick and intense, it seems I'm reacting to artificial UV white light because that's all i can pinpoint. My skin actually blisters as well and I have to cover it at night at times. I'm very self conscious about it. It only lasts a week maybe a bit more maximum so never enough time to get a GP appointment.

I've used Nivea SPF 30 daily but maybe not as regular as it should be. I moisturize with E45 twice a day and sometimes use Aloe Vera Gel. All advice I've sought through Google. I have been prescribed a rosacea gel previously but that made it worse. I drafted an email to my local rheumatology advice line but it seems to have been discontinued as it bounced back and I can't find it under services.

If I'm honest I'm keeping a record but when I offer to show photos I get met with indifference. It didn't bother me until it became more frequent. But Im getting desperate. I am on hydroxychloroquine and it's been a game changer for many of my symptoms but not preventing this.

Just hoping some of you have recommendations of best suncream, moisturizer, face masks, treatment for acute flares. Alternative, normal or prescribed im open to anything if it can help. I really don't know what to do because it feels like I've tried all Google can offer.

Thank you in advance

[RosieA]

I am so sorry you are struggling with this. My malar rashes come and go but are particularly problematic at night. I would suggest not wearing below F50 and in the summer wear hats with sun factor built in (you can get these from Sunsibility etc- they often come from Australia). Some people wear clothing. with sunprotection.

Other than that, check you light bulbs - are they emitting UV. I put my computer screen on nightshift- emits a yellow tone rather than a stark white.

I find my rash tends to come either after unwitting, sometimes hours to days later. I usually get it when my disease is more active.

Hope this is a little help. Others will have lots of more ideas.

[Heatheric]

Hi Ziggidy, so sorry you're having these problems. I had a whole series of issues with my skin but it is so difficult to see the right person. Eventually (and I should have done it earlier ) I sent a message to the lupus team explaining all the symptoms and got a phone call appt. From there I am now on different meds and things have settled right down.I suggest you make contact with your rheumatologist, use whatever number you have on your last letter and even if that is not the right number - my experience is that people are very helpful and get you to the right department.

You could also ring for a gp appt, explain that it's a whole series of events and your concerns and you should get a response.

Finally, do try something like Lupus UK website rather than Google for the best advice advice.

Please do not rely on factor 30 it is not protective enough - factor 50 several times everyday should be better.

Good luck.