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Discoid Lupus

Marilyn R

By Marilyn R
in Dermatitis Herpetiformis

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Marilyn R Community Regular
Marilyn R
Posted

Here's my story about Discoid Lupus, another autoimmune disease. I had patches on my skin, one on my cheek, another on my nose. They didn't itch. My dermatologist thought they might be skin cancer and biopsied both spots over the course of four years. Then I got this spot on my left lower earlobe that just itched like crazy! It didn't go away forever, and I tried every topical ointment in the world on that spot on my ear and I still just wanted to itch it. And itch it and itch it!

The dermatologist didn't "think it was anything". Discoid lupus is easily treated, the new improved derm gave me an rx for a steroid cream that you apply 2 x a day for two weeks, stop, then only apply when you have a flare up.

According to the Lupus Association of America, Lupus is a disease first reported in the 13th century by a physician who called it Lupus, greek for wolf, because the skin lesions appeared to be wolf bites.

It took me over 5 years to get diagnosed. It usually takes about 4 years. So I'm sporting long sleeves and long pants in the subtropics, but feeling better.

I'm glad to know I have it, I can take precautions now. (My flip flops are stained with sunscreen, but they're still working, and so am I).

If you ever have a sore (usually on the earlobes, nose or cheek) that doesn't heal, and/or has tiny white scales on the edges, consult a dermatologist. They have to do a deep biopsy to get it properly diagnosed (puncture for the ear, not possible for the nose, consult a plastic surgeon for the cheek.) If anybody wants advice on sunscreen, send me a PM. I have it down!

And if ya'll would wear purple on this Friday, that would make me happy. It's to increase Lupus awareness, which is why I am posting this.

Two of the lesions didn't itch. They were just ugly and didn't heal. The one on my ear I swear was going to drive me bonkers with the itch. That's why I changed derms.

I have one on my chest now, it's small. I recognized it only because of the white crusty edges.

So long story short, beware of white crusty edges if they itch or not. B) And I don't think it hurts to take SUV protection seriously. (I ignored that advice my whole life.) :ph34r:

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GFinDC Veteran
GFinDC
Posted

My co-worker's husband may have lupus. They are still in the testing though. Thanks for posting about discoid lupus, I just looking for info on it yesterday.

Here's a guide to sunscreens, both good and bad. They don't like the ones with retinal palmitate (vitamin A).

[url=Open Original Shared Link the Best Sunscreens

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squirmingitch Veteran
squirmingitch
Posted

Marilyn thanks for the post. Now I will know what to look for.

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Marilyn R Community Regular
Marilyn R
  • Author
Posted

My co-worker's husband may have lupus. They are still in the testing though. Thanks for posting about discoid lupus, I just looking for info on it yesterday.

Here's a guide to sunscreens, both good and bad. They don't like the ones with retinal palmitate (vitamin A).

[url=Open Original Shared Link the Best Sunscreens

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GFinDC Veteran
GFinDC
Posted

I'll give the purple a shot. I have a purple shirt around here somewhere. PANCAN was doing them a while ago for their pancreatic cancer awareness campaign. :)

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Marilyn R Community Regular
Marilyn R
  • Author
Posted

You're a good man, DC. Thanks. xxx ;)

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squirmingitch Veteran
squirmingitch
Posted

Marilyn, I would wear a purple shirt if I had one I swear. I don't have a single thing purple colored, nor violet, nor lilac. I have a skin tone which is weird --- I put on any shade of purple & it literally makes my skin appear a sickly green shade. So no purple clothing comes in this house. But I will be thinking purple if that helps!smile.gif

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Marilyn R Community Regular
Marilyn R
  • Author
Posted

Thank you squirming! Is that blossom in your avatar still blooming? It's purple! (And beautiful BTW!) Thinking purple is a blessing, thanks!

Here's a worthy link for men with Lupus, Paul, in case you want to share with your co-worker.

Open Original Shared Link

It may go into too much detail, your decision. Maybe just give them the link and let them discover on their own? The thing I can't emphasize enough is that it is so much better knowing than not knowing. It's almost like a gift. You wonder what it is....

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squirmingitch Veteran
squirmingitch
Posted

LOL Marilyn, I picked up that avatar from public domain. However I am a gardener & used to be a beekeeper so it "fit". I'm between gardens right now --- moved & selling the old house & bought property & have to build a new house. Renting now. No gardening. Itching to dig in the dirt. I do love purple flowers though.

I had purple thoughts all day.smile.gif

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GFinDC Veteran
GFinDC
Posted

Thanks for the link Marilyn. I'll send that to to the guys wife. They are going through the diagnosis process and testing now.

I found my purple shirt and printed out some celiac and lupus labels to stick on it. I am going to wear it to Artomatic tonight Should be interesting. :)

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squirmingitch Veteran
squirmingitch
Posted

Thanks for the link Marilyn. I'll send that to to the guys wife. They are going through the diagnosis process and testing now.

I found my purple s$#& and printed out some celiac and lupus labels to stick on it. I am going to wear it to Artomatic tonight Should be interesting. :)

VERY interesting since you're going to be wearing your purple s$#&.laugh.giflaugh.giflaugh.giflaugh.gif

Sorry, couldn't resist.

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GFinDC Veteran
GFinDC
Posted

VERY interesting since you're going to be wearing your purple s$#&.laugh.giflaugh.giflaugh.giflaugh.gif

Sorry, couldn't resist.

Oh crap. typo city.! :( Well, the purple xxxx went over pretty well anyway. Maybe I should wear it more often! :)

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Marilyn R Community Regular
Marilyn R
  • Author
Posted

Especially since it agrees with your skin tone! Glad it all worked out! ((( )))) Thanks~ B):)

BTW,former beekeeper, wow, very cool, Squirmingitch.

and PS for the co-worker's hubbie, Coolibar.com is a good (but expensive) site for protective clothing. Columbia has some good clothing too, that's in some dept. stores here, not sure about DC.

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GFinDC Veteran
GFinDC
Posted

Hah, I suppose it does go with my skin tone at that1 :) Thanks for the coolibar link, I'll send that to them.

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Marilyn R Community Regular
Marilyn R
  • Author
Posted

Last night at happy hour at my neighbors (officially lasted for about 3.5 hours), why limit happy to 1 hour, the host showed me his Calcutta scarve. (He used to play semi-pro baseball, coached too. It's SPF 50. I bought a purple one with sharks on it today. It's the bomb! :D Jimmy showed me all the ways it could be worn. I'm not endorsing Calcutta, therer\ are other manufacturers, Anyway, it's all good.

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