discoid lupus question

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New Member

Date Joined Apr 2007
Total Posts : 19
   Posted 4/8/2007 10:48 PM (GMT -6)   
Hi all -

I'm a new member but have been lurking here for a while and I have appreciated learning from all your comments. Tonight I finally have a question.

I was diagnosed with UCTD a few months ago. I have been sick for a few years with pulmonary vasculitis and the doctors have been watching me for symptoms of lupus so the UCTD diagnosis was not a surprise.

Last week the dermatologist checked some lesions on my legs that have been coming and going for the past year. She suspects deep tissue vasculitis and I'm having a biopsy the next time they are at their worst so she can confirm this.

While I was there, I thought I'd ask about a white mark on my face, about the size of a dime. The skin is pure white but otherwise looks normal. Beneath it there is some hardened tissue. I was expecting it to be something like a cyst, and was totally thrown off guard when she told me it is discoid lupus. I was prescribed Elidel cream but since I was so surprised I didn't ask all the questions I should have.

Do any of you have experience with discoid lupus? The info I have found online describes (and/or has pictures of) dark red or purple lesions. I haven't seen any reference to tissue that has turned white. I don't know if this area is going to scar, stay the same or go away, and a second white area has started developing on my chin in the past few days.

Any info you can share is appreciated.

UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 4/9/2007 8:27 AM (GMT -6)   
Hi Laura,
   I'm sorry, I'm not much help with the discoid lesions, but we do have some members that have been talking about this lately. Hopefully, they will come along soon to help you out.
  I just wanted to welcome you to the forum. I'm glad you have been reading posts and decided to ask a question. Sorry, I wasn't any help to you on this. Feel free to ask all the questions you want. We have a great group here that will help you in anyway possible.
  I hope this gets better for you soon. Please keep us updated and take care.
 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
mirapex,advair,foxamax,donnatal,folic acid.
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 4/9/2007 5:17 PM (GMT -6)   
Hi Laura,
Yes, welcome to the forum. I'm with Babs on this one too.  I don't have a lot of experience with discoid lupus, however I do have the purple "livido reticularis" on my wrist and ankle.  It's a sign of vasculitis too.  It comes and goes with the severity of my lupus.
All I can say is that discoid lupus will present itself as unique as systemic lupus will.  Everyone is a little bit different in their symptoms.  I would stay the course and use the cream your doctor gave you. If this new spot gets bigger, I'd go in for another visit with them.
I can do anything through Jesus Christ who strengthens me.  I have learned in whatever state I am in, to be content.  Phillipians 4:11-13

Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia, food allergies
Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, micronor, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Aug 2006
Total Posts : 334
   Posted 4/10/2007 3:15 AM (GMT -6)   
Hi Laura, welcome to the forum.
Sometimes discoid lupus can make the patches, or lesions hardened or scaly. As the lesions heal they tend to leave scars and on darker skin the pigment is lost which leaves the whiteness your talking about. Discoid lesions are called plaques. Sunlight is known to exaceberate (sp??) plaques. Steroid cream treatment is often given to reduce the appearance of hardened plaques, something like Betnovate. Plaquenil is also very effective in discoid lupus. Most plaques are on the face and head, and in the hair can cause patches of hair loss, wearing a hat outside helps keep the head from the sun and minimise the exposure. I think that although the scars can be reduced with the creams, they never go away altogether. It's good that you now know what this is and your rheumy should be helping to ensure new plaques are treated straight away to stop them forming scars. Good luck to you, and keep us posted. Take care x x
Chillblain Pattern LE, tachycardia, unknown bowel problems, migraines.
One gorgeous daughter age 5 after many many IVF attempts

Veteran Member

Date Joined Mar 2006
Total Posts : 2608
   Posted 4/10/2007 10:59 AM (GMT -6)   
Hi Laura,

I join lion, Ginny, and Babs in welcoming you to the forum. It sounds like lion knows a lot about discoid lupus and may have answered all of your questions.

Before your next appointment with your dermatologist or your rheumy, arm yourself with a written list of questions to ask the doctors. It's hard to do that when you get a surprise diagnosis like you did.

Let us know more about you. I look forward to seeing more of you in our forum.

Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision.

cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, cymbalta, tramadol, lunesta, actonel, meridia, tricor, aciphex, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Feb 2007
Total Posts : 235
   Posted 4/10/2007 2:56 PM (GMT -6)   
Hi Laura,
Welcome to the forum!! I have discoid Lupus as well ,on my face ,but recently had more on my neck behind my ear-very itchy and no color.
The lesion on my face is lighter after treatment,but still very noticable and scared-''wolf bite'' the dermatologist called it,the scar looked like puncture wounds and small pieces missing-hard to explain. I have come into contact with someone else who has the white patch verses the red,is your skin normal in texture just seems to lack pigment? Truthfully,I thought it normally became scaly or dry,if yours isn't scaly,good! I hope they keep an eye on it,it took over 2yrs for someone to know what it was without hesitation.
Are yours ever itchy? The ones on my neck are driving me mad!
I can't say if your lesions will scar or not,are they raised and hard ? Mine were,but looked like I was picking at it (I didn't),I was told it was very characteristic of the type I have. It wouldn't hurt to ask your dermatologist about possible scaring ,etc.
I wish I could have been more help,Take care Laura! CRYSTAL

New Member

Date Joined Apr 2007
Total Posts : 19
   Posted 4/11/2007 9:24 AM (GMT -6)   
Thanks so much for your replies, and I feel very welcomed. I appreciate the information.

Montecarlo, the lesion on my face has no visible difference in texture. It looks like the area has been bleached, and to the touch the area is hardened. I discovered a smaller area of the same type on my chin so I will monitor that for any growth or changes.

The next time the red spots on my legs flare up, I have to get a wedge biopsy - I wiill be sure to ask my dermatologist the right questions regarding this discoid thing then.
UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP

New Member

Date Joined Apr 2008
Total Posts : 1
   Posted 4/7/2008 7:59 PM (GMT -6)   

Dear Laura,

I have Lupus, Sjogrens and vasculitis and almost two years ago my regular doctor thought I had basal cancer on the side of my nose. It was removed by a plastic surgeon only to find out that it was Discoid Lupus. My regular doctor is a really nice man but I recently change to an internalist as they have more experience. If I only thought it has something to do with my Lupus, I would have seen my Rheumatologist. Boy don't I feel dumb. I have so many bouts with it all and now I have what I call Full blown Discoid Lupus. It started out as one little warty looking spot and now I have the circular lesions on my scalp, forehead, nose and one ear. I actually have an appointment on Thursday to discuss treatment. I just wanted you to know it seems to come and go and take different stages. I had no idea there were so many different ways I could and would be affected from Lupus. I've been to John Hopkins in Maryland for treatment before when the Lupus attacked my organs. I can say that was the worse. For this skin thing, I've been using mineral makeup over some antibiotic oinment. Some days it looks better than others. I hope I didn't scare you any but I wanted you to know that you should keep up on it. It has reared too many heads on me.

Take care,

Dawn :)

Regular Member

Date Joined Mar 2005
Total Posts : 401
   Posted 4/10/2008 8:36 PM (GMT -6)   
Hey there..
I did do alot of research on Discoid Lupus because thats what I was first diagnosed with.. I developed the rash.... They did biopsies at the dermatologist.. they even did blood tests. I was officially diagnosed with Discoid Lupus.. I just continued to decline after a few months.. I kept going back to this stupid doctor.. and compaining that I was loosing my hair and all the other symptoms that go with SLE.. He finally sent me to another dermatologist that specialized in Lupus and he did a whole round of tests.. And I was diagnosed with Internal Lupus.... Kidney Disease... Blood disorder (Anticoagulant) Fibro,,, K I feel like I am complaining now.. the list goes on.. BUT I did alot of research about Discoid lupus and its so strange how its hard to find alot of info on it... I went to tones of book stores trying to find info.. And I would get one page... Anyway.. I do know some info.. so if your interested in what I know.. Just respond and I will tell you what I know. Not a doctor just did my own research.. I bet there are people on here that know way more than me on Discoid.. But let me know
Take Care
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