Just found out I have discoid lupus on my scalp Perhaps I should say that I'm really fair skinned and usually use factor 50 as i burn easy

Question 1 I need to stay out the sun and be protected but then that means I won't receive vital vitamin D, but as I orginally presented with SLE Nephetitis (sp?) can I still take supplements? (Have I understood that right)

Question 2 Is there a product that anyone has any experience of that you can spray/rub into your scalp as a sun cream protection?

There's lots more I want to ask but I won't push my luck just yet!

Many thanks

8 Replies

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  • Hello - very bad luck about the diagnosis.

    1. You should take vitamin D and calcium - especially if you take steroids (prednisolone/prednisone or other steroid). Your doctors can prescribe Adcal (which you chew) - or you can buy vitamin D and calcium supplements from somewhere like Holland and Barrett.

    2. I'm afraid the only thing I know that is going to protect your scalp is called a Hat! Lots of us here have to wear them at all times and not just in the Summer, so you will be in good company.

    3. I have found a factor 100 matte sunscreen that is very good - it doesn't melt off you in the heat and it is not greasy. Can't remember the name of it but I'll get the tube from my car and post it tomorrow if I can remember!

    Take care!

  • Hi thanks Maggie I already take Adcal have been since they diagnosed Coeliac Will have to talk to the Doc about the Vit D and see what he thinks.

    I guess I'm concerned that I can be lazy and perhaps forgetful about protecting my skin. Conscious that my hair is thin anyway so do have a couple of hats which I only use when i'm in the garden. I've got to get over myself and be confident to wear to work and about the town.

    Thank you agian for your help, really appreciate it.

  • Morning

    I am the same good old sun cream on a crisp sunny winters morning. I honestly dont remember a day that I dont wear it.

    Boots now sell sun factor 50 in the no7 range its fab its no where near a thick as the usual stuff. Another make is avene which boots sell but not the whole range. Again if you do sweat it doesn't sting your eyes when it runs or like putting lard on face. My dermatologist recommended both thsse.

    Sprays for hair lots on market try using the travel sizes first to find one that suit's you and your hair

    Ive found the kids sprays the best and not the expensive ones as they seem to have less chemicals.

    Good luck xx

  • Thank you. Like the idea of the travel sized ones to try. Will look out for the Avene I doubt ours will do as a small store but will check online see if i can order it to store.

  • I also have a sensitivity to sun ( daylight ) and I have an umbrella especially for Lupus/light sensitive patients from a company called Umbrella Heaven. It really does work, it reflects the light off your body. I also buy through e-bay a sun cream called Neutrogena Age Shield Face SPF 110 from the US. I cannot find a supplier in the UK. I use this suncream all year round even on dull days. I feel also you should take a vitamin D as Lupus UK feel that flare ups of the disease tend to occur during the winter months when we haven't absorbed enough Vit D. Hope this will help.

  • Thank you for the reply. That's interesting that you talk about the flare coming in the winter. I'd put it down to my porridge oats as it gets worse in october/november which is when i enjoy hot brekkie so I stopped them of course made no difference but thought it would take time to reverse out. So Happy to be able enjoy them once more Lol

    Many thanks

  • Hi luv by, I'm diagnosed Discoid eczema ?Discoid lupus. Just thought I would add I find oats cause flare up for me so I do not eat them. I cannot tolerate oat milk nor oat skin lotions. Sad for me because I like natural products but oats not good for me. Sun and winter both harsh for me regarding flare ups too. Keeping a diary helps to find own triggers. Good luck.

  • How do you get your vitamin D ?

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