discoid lupus in Costa Rica
Is discoid lupus on-topic for this forum? Hope so… I got a dx of discoid lupus this year after six years of on and off anti depressants. (I love the doctor who diagnosed me - so happy to be told I'm not crazy.) I get very few rashes, but the brain fog and tiredness make me feel like a waste of space. Synonyms for stupid and lazy. But I'm very grateful that that it's not worse. Also Hashimoto's and some unidentified diet problems, maybe allergies, but avoiding wheat, dairy, red meat and prepared foods has helped. Are intestinal problems common? Getting a dx was a great relief - tho I still feel like a hypochondriac. Betsy Jane, I deal with the brain fog; and feel bored and boring when I have a flare. Never used to feel that way. Saysusie, I keep elaborate lists because I forget everything, altho I think maybe that's just me, not the DLE. Ilovehistory, I take vitamin B for the brain fog too. It seems to work better in the form of a neurobion shot than pills, don't know why. I love history too! A friend of mine just recommended modafinal for the brain fog, but I don't know anything about it.
Since I live at high altitude and near the equator, I've got to be extreme about avoiding the sun. I've been looking for books with practical advice about that. Anyone have a recommendation? Hats, thick clothes, strong sunblock, and avoiding midday sun aren't enough. I tried going to the farmer’s market at 6 am, but that wasn't early enough. My car has dark tint film on all the windows. I put 3M UV block film on all my windows in my house (and curtains), but I can't tell how well it works. I think I need to wear gloves, especially when I drive, but I feel very self conscious about wearing gloves here in the tropics. Anybody else here that eccentric? Maybe I should get a long elegant cigarette holder to go with the enormous floppy hat and gloves to the elbows…
Does anybody else have DLE? I couldn't find books or info directed specifically to that, rather than a page or two within an SLE book.
Some patients with SLE also suffer from DLE. Less that 5% of patients with DLE will develop SLE. Patients with DLE probably have a genetic predisposition for the disease; however, the precise genetic factors that increase the risk of this disease are unknown. The disease usually occurs following UV light exposure, but other triggers or inciting factors also must contribute and all of these factors are not known. Some DLE patients also have the lesions of subacute cutaneous lupus erythematosus (SCLE), and some may have a malar rash. Worldwide, the prevalence of SLE ranges from 17-48 cases per 100,000 population. The highest prevalence of SLE usually occurs in persons aged 40-60 years, and is approximately 10 times higher in women than in men.
Patients with DLE often are divided into 2 subsets: localized and widespread. Localized DLE occurs when the head and neck only are affected, while widespread DLE occurs when other areas of the body are affected, regardless of whether disease of the head and neck is seen. Patients with widespread involvement often have hematologic (disorders of the blood) and serologic (characteristics of a disease or organism shown by study of blood serums) abnormalities, are more likely to develop SLE, and are more difficult to treat.
Cortisone ointment applied directly on the skin where the lesions are has been known to improve the lesions and slow down their progression. Cortisone injections into the lesions will also treat discoid lupus and usually are more effective than the ointment forms of cortisone. Doctors often prescribe Plaquenil which works very well to improve the condition. However, Plaquenil can take weeks to months before you really see the benefits. The lesions heal from the bottom up and the lesions usually go very, very deep. So, be patient while on Plaquenil, it is working but it takes some time. If you are prescribed Plaquenil, you will need eye exams once or twice a year to prevent damage to the retina of the eye and periodic blood work. If you have a reaction to Plaquenil, there are closely related drugs (Aralen, Quinacrine) that may be more effective, but they also have more side effects than Plaquenil. Other drugs, such as Accutane and Soriatane, can also be used.
In my early stages of this disease, I had DLE and SLE. However, once the DLE was healed, the lesions never returned. Hopefully, the same will be true for you and hopefully you will never develop SLE!
I wish you the very best!
Welcome to the Forum! I'm glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
Keep well and God bless!
I have DLE and SLE and I too have extreme issues with the sun as well as indoor lighting. I live in Alberta, Canada so I only have to deal with extreme heat for about 2 months of the year (thankfully). But my province is known as the "SUNNY ONE". I gave up on sunscreens as they have no effect on me. I wear a long sleeved denim shirt (white to reflect some of the heat), a floppy hat, a veil made from that "Sunprotect" fabric, long pants and yes gloves especially when I'm driving. I too hate the gloves (I think it's psycological - because with the hat, long sleeves and veil - just how much weirder do I really look with gloves?!?!) But after 15 years of not wearing them, I have a lot of icky looking skin on my knuckles and they burn in about a minute. So now I wear gloves :roll: Many moons ago, I was planning to spend 6 months in Costa Rica with a friend. I did a ton of research - it's an incredibly beautiful place. Unfortunately, I never ended up going and now I don't think my body would withstand the heat and the sunshine. I don't travel at all anymore. God bless the Discovery Channel - my window on the world. I am an armchair traveller 8) . The only thing I can suggest is have some special clothes made that suit your needs. I am having a sort of overall made in a medium weight cotton (sleeveless) and an over shirt in cotton and mesh. Double cotton layers over my arms with an extended piece for over the back of my hands held with elastic (I figure my hands won't sweat so much this way). Using the mesh over the areas that are covered by the overall. I'm also having pockets made on the middle of the back and on the side of the thighs which will accomodate ice packs as I also have extreme sensitivity to heat. I'm hoping to look less freakish, but I suspect I'll just be a more fashionable and better coordinated freak!
Thank you Maggie, Ilovehistory and saysusie,
Ilovehistory, saysusie, I wasn't sure if this forum was for DLE, or just SLE, and it's kind of you to welcome me Maggie, I feel like such an eccentric it's great to have somebody to talk to about that! I went to my high school reunion in the beginning of August and I realized that they've always considered me eccentric, and seem to accept it, so this is just a logical continuation. (They had the year group meeting out in the sun on the lawn, so I didn't get to hear what everybody's been doing. ) My husband has cheerfully picked up a lot of the work I used to do, like yours. I think my getting sick has made us closer.
Some things I found useful: Yesterday I found that some of the weather reports will give a UV index for the day at the bottom of the page. Intellicast does. (Today's index in Costa Rica is 10 out of 11, for 'extreme'.) Also, I was reading the Solar Index Guide, put out by UNEP. It says "With every 1000 metres increase in altitude, UV radiation levels increase by 10% to 12%." (think I'll move to Vancouver, at sea level ...)
Also, I found a website called South Seas Trading company in Maui that sells a little card for $5 that measures UV. For that price I don't expect great accuracy, but I sent away for it. I was planning to use it to see how much UV comes through the 3M brand UV block film on my windows. They also sell a $30 measurement device. Has anybody tried that?
Oluwo recommended the RIT brand sunblock laundry additive for clothes. I bought some from Dermadoctor, just arrived and I haven't tried it yet. Thanks Oluwo for mentioning that!
Hi Ave_Paramo :lol:
Yes, I want to make sure that you know that you are completely welcome here and that there will always be someone here to help you whenever you need it!
Thank you for the information about finding UV ratings. I never knew about any of those options
Peace and Blessings
A good resource for information is www.xps.com. This is the first place I found helpful information about people who had similar sun and light issues I have. Granted people with xeroderma pigmentosa have worse than we do but the support and the people are awesome. My husband and I often talk about moving to Prince Rupert, B.C. because it is the cloudiest/rainiest place on earth! It is such a blessing to have a supportive spouse - I really don't know that I'd be here without mine.
Saysusie and Ilovehistory, thank you very much for your support! Maggie, your xps com website was really really useful, thanks so much!
I have been busy following up on all the new info from links on that site. My new UV meter from Solartech arrived, and it works great. Using it I found out that my office didn't have UV window film they way I thought it did, and that was why I got sick last november. (That was dumb.) I used the new meter to test the 3M UV window film with the 3M salesman. He said all the films block nearly the same amount of UV, but my new meter says they are different.
I spent a while looking at the sunblock reviews on cosmeticsdatabase too. Those were off your xps site too. That was an eye opener. I didn't know that US sunblocks can post false claims and exaggerate how long they work for. I bought some Blue Lizard sunblock from ebay, recommended on the sunblock review site. The bottle is very cool - it turns from white to blue instantly in the least bit of sun. But it made me itch all over for days, and I got brainfog one day too, so I gave it up. I'm not sure what sunblock to use now.
Maggie, when I put on gloves in the tropical heat and people stare at me, I think of you up in Canada.
Does anybody have a glove website for mail order? Gloves are not easy to find here in the tropics.
I've been looking at the UV rating on the weather reports from Intellicast too. But for the last month it says the same thing everyday - UV exposure is 11 on a scale of 1 to 11. So I guess it's really only useful if I travel to a new place.
Is anybody on facebook?
I've been able to work and pretty active this month, partly because of the advice I got on this board, the direct replies to questions I posted and reading all the information already up there. I realized that I tend to think of coming here only when I feel bad and haven't got the umph to do the work that's waiting. I want to thank you all so much for the help!
It is good to hear from you again. I'm glad my info was helpful. I'm not sure about the website, but I buy hand covers from Sunveil in St. Thomas, Ontario. I'll try and find the brochure I have somewhere around here and send the email address. It is a special mesh fabric which reduces the exposure to harmful uv. My hand covers are helpful but not completely protective, they have no fingers and I usually now wear leather gloves but if you want to try them out they are only about $10.00 Cdn. Happy days!
I have DLE and SLE, and I am sensitive to the sun and flourescent lights even with Plaquenil. I have about a 10-20 min. window without UV clothing. Google Coolibar Clothing, they are having their end of the Summer clearance sell on all UV clothing. They are UVA/UVB protectant. I always purchase one or two blouses on sale; otherwise I wouldn't purchase any at all. I usually wear tank tops under the long sleeve blouses Summer and Winter. They are very cool and comfortable. If you don't like to iron, purchase clothing that states dri in the fabric name. They don't wrinkle at all; ironing is not my favorite.
Good luck and happy shopping! 8)