In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
I have discoid lupus and my local health shop recommended taking a B vitamin complex to improve my tolerance to the sun. It's supposed to be started a couple of months before a sunny holiday for example but she advised me to take it all year round as it may help.
I get discoid lupus particularly on my head so it's hats even on a dullish day which i hate but I soon suffer if I don't. I wear suncream all the time in Summer and to be honest I just stay out of the sun as much as possible. I forgot about the car and suffered a couple of times so when I'm out working I also cover up and suncream up. I have found suncreams (oils) you can spray on your hair for your scalp but I don't feel the protection is probably enough.
Sadly it means I can't bear the thought of a holiday somewhere hot and sunny, I always choose cool and not hot climates.
I also drink plenty of water. One of the firstn places I notice a lack of fluids is I get very dry eyes and drinking plenty of water helps reduce the problem and redness I can get.
I was told by my consultant that the baldness would never leave and that I was stuck with it for life. I have found though over the last year or so that little sprouts of fresh hair have appeared and the bald patches are definitely not as pronounced as they were or as red and angry. I'm also in a less stressful place in my life which has helped enormously.
The other thing I have found is the use of baby oil. It's very gentle but messy. When I have a flare up I will put oil on the area at bed time and wash it off the next morning. It makes a mess of the pillows but it seems to soothe it especially when the surrounding skin feels very dry as well.
The vitamins will take about 3 months for a build up to have any effect and I was advised to take them all year round - it's to do with the beta carotene. I think I said vitamin B but it's this - sorry!
'Oral Beta-carotene is prescribed to people suffering from Erythropoietic protoporphyria. It provides them some relief of the photosensitivity.' http://en.wikipedia.org/wiki/Carotene
I have alot of the same issues. Can't get too cold (not easy when you live in the upper midwest), can't get too hot (once again not easy), can't stay out in the sun . . . If I am out in the sun for more than 5 minutes, my issues just explode and I pay for it for months with flares. But always doing things in the evenings makes me feel like a vampire.
Took a trip to southern China and Hong Kong last year and am going again this year . . . lot's of equatorial sun (when it isn't raining!). When in China, I did as the Chinese to avoid the sun: I used an umbrella and wore breathable long pants & sleeves, SPF 80 sun screen. Also LOVE the south of France (my husband is from Belgium, so we make bi-annual trips to Europe and we generally try to hit the beaches there as well). Once again, a continent that does not pride itself on how tan they can get and don't look at you funny if you are taking preventative measures for your skin.
Coolibar is another good place to look. I like their sport hats and they have other sun hat options that are nicer than the big wide "grandma in the garden" sun hats I have found at most other places. They also have cute beach shirts and sun pants.
Let me know where you decide to go! (take me with if you have room in your suitcase ;) )
Here is a link with a picture of my skin suit . . . its even on sale!!
21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08
Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C
Sometimes we feel our flame of life flickering and growing dim then someone acknowledges who we are and what we can be and rekindles our life with hope and love