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Discoid Lupus


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#1 Marilyn R

 
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Posted 16 May 2012 - 12:26 PM

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:
  • 4
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

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#2 GFinDC

 
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Posted 16 May 2012 - 02:28 PM

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).

Choosing the Best Sunscreens—and Avoiding the Worst
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#3 squirmingitch

 
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Posted 16 May 2012 - 03:32 PM

Marilyn thanks for the post. Now I will know what to look for.
  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#4 Marilyn R

 
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Posted 16 May 2012 - 05:38 PM

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).

Choosing the Best Sunscreens—and Avoiding the Worst


That was a good link, thank you! Will you wear purple on Friday? B) :)
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#5 GFinDC

 
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    A little farting never hurt anybody... :-).

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Posted 17 May 2012 - 11:25 AM

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. :)
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 Marilyn R

 
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Posted 17 May 2012 - 04:53 PM

You're a good man, DC. Thanks. xxx ;)
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#7 squirmingitch

 
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Posted 17 May 2012 - 05:03 PM

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!Posted Image
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#8 Marilyn R

 
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Posted 17 May 2012 - 07:08 PM

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.

http://www.lupus.org...=109&zoneid=529

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....
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#9 squirmingitch

 
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Posted 18 May 2012 - 06:42 PM

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.Posted Image
  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#10 GFinDC

 
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    A little farting never hurt anybody... :-).

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Posted 19 May 2012 - 02:12 PM

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. :)

Edited by GFinDC, 19 May 2012 - 07:45 PM.

  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#11 squirmingitch

 
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Posted 19 May 2012 - 03:06 PM

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 shit 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 shit.Posted ImagePosted ImagePosted ImagePosted Image

Sorry, couldn't resist.


  • 1

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#12 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

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Posted 19 May 2012 - 07:44 PM

VERY interesting since you're going to be wearing your purple shit.Posted ImagePosted ImagePosted ImagePosted Image

Sorry, couldn't resist.



Oh crap. typo city.! :( Well, the purple xxxx went over pretty well anyway. Maybe I should wear it more often! :)
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#13 Marilyn R

 
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Posted 19 May 2012 - 09:24 PM

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.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#14 GFinDC

 
GFinDC

    A little farting never hurt anybody... :-).

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Posted 20 May 2012 - 09:57 AM

Hah, I suppose it does go with my skin tone at that1 :) Thanks for the coolibar link, I'll send that to them.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#15 Marilyn R

 
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Posted 20 May 2012 - 06:12 PM

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.
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.




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