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sunmiss
New Member


Date Joined Mar 2007
Total Posts : 2
   Posted 3/17/2007 5:08 PM (GMT -7)   
I'm not sure how to reply to the replies that have come - and thank you for your replies...
 
The lesions that I have are confined...one small spot is next to my nose (in that line that goes down past my mouth - like when I smile) and the other is on my chin - smack dab in the middle - the bigger of the two.  They have been there 3 years and they do not burn or itch...they don't fade and have never gone away for any period of time.
 
They appear as very red and are tender.  The one on my chin has thick skin - almost wart-like.  They've had white snaky like things - I thought to be like pimples - that come out when I've squeezed them but they've never gone away. The one on my chin actually has had pimples with pus and blood and fluid.   I've never had trouble with acne in my life - other than an occasional pimple at times of menstration or stress.  Sometimes when I've squeezed these lesions and it seems like the bleeding won't stop and then clear fluid drains.  That's why I guess one doctor thought it was cystic acne.  Another doctor had me on the Clobex lotion for a few months last year but when that skin punch came back negative for discoid - they dismissed it.  Another dermatologist had me on a few months of doxycycline and that didn't help along with a topical antibiotic - Acnemyacin.  Another sent me to a plastic surgeon - thinking it was cysts but he said no - if he cut it off - it may come back not knowing what it was.  That's why I had the other skin sample done last week - Tax refund to help pay because the last time I had it done the dermatologist quoted me $250 for labs that the bill was $1000.  It's just baffled me why the first sample said no to discoid lupus and this one said yes.  I wish I could look at the evidence myself.  I may ask the dermatologist to have another lab look at it - hoping maybe I can get some kind of break on the cost.
 
It's so expensive to visit the doctors.  Over the last three years - all the topicals I've tried included Clandamycin, Differin, Metrogel, Finacea, (not all at once - but at different intervals...)  Plus I've tried homeopathic - Draw Out Salves, Fish Oil, MSM vitamins, get rid of yeast tablets, Candula gel, aloe vera tablets, potent vitamin E cream, ... nothing has helped it.  I know I've probably aggrevated it by picking at it so but I've been baffled and just tried to get out the pimples and have a scab fall off in hope healing would take place but to no avail.
 
The other symptoms I have are little red spots on my fingers that for the past several years they appear after Thanksgiving and go away after Easter.  When it is really cold - they get sore when I open a jar or use my hands.  They are only on my fingers, not on my palms or front side of my hand.  My fingers have never turned blue or white - just these patches of red and soreness.  Sometimes they are little red spots on the bottom side of my toes that are tender that come and go - but not as bad as my fingers.
 
I also have a small lesion on the top of my scalp - no hair loss -  and I can't really see it to study what it looks like and some dermatologists thinks its of seboreric nature - dry scalp - and I do use hair dye once a month.
 
I live close to the ocean and these last few years I've tried my best to stay out of the sun - I wear hat, clothing, etc...my eyes are sensitive to the light, though, sometimes I don't take off my sunglasses - even inside the house until the sun has set!
 
I have no joint pain - like my sister and brother, with rhuematoid arthritis, and fibromyalgia.  I do experience chronic fatigue and major depression but that I believe is circumstantial - what's going on in my life with family and work, etc....The doctor that took my bloodwork told me to quit smoking - gave me a prescrip for Chantix - saying if it's lupus - smoking can aggrevate the circulatory system and toxin the blood and lungs...
 
I was hoping that someone whose had discoid lupus has had something similar to mine to confirm - yes, how it behaves is like that, but I don't know of anyone. Pictures on the internet don't look anything like mine.  I understand no two cases can be alike - and I'm paranoid that this doctor/lab may just be telling me it's discoid lupus and it really isn't - do they know what they're doing? I mean, maybe under the microscope it looks like discoid lupus but really it's not - especially since it came back negative once before....
 
Anyhow, my blood tests should confirm something next week.  The dermatologist may try an injection of steroid and maybe prescribe Plaquenil or something - I understand these help with inflammation.  I understand though, that the use of steroids, especailly if its Rosacea could make it worse.  If it doesn't heal in the next several months I may try to go to Chapel Hill to a group doctor thing my dermatologist was talking to me about.  It's like 30 doctors in a room with you - going over all your records and lab tests and going from there - sounds like a nightmare and the price of a month long vacation - Could it be a curse? - there's my paranoia coming out...LOL..I've even put Holy Water on it!
 
I really do appreciate all the replies and support - It's been difficult being vane to a degree that when in public people may think I've got some disease like leprosy or herpes or something.  It's just when I look at it - I know it's something serious because it won't go away and yes, the one on my chin is getting bigger - spreading ouward -and I just want to trust the doctors - and when they see you for 15 minutes and say see you next time - I guess what else can they do?
 
I see so many different people with different ailments in their lives - everyone looking for a cure...or something to help the symptoms - looking for answers of some sort - for support for the emotional and psychological aspects...looking for relief for pain and suffering - and yes, thank God, we'll be led to our own source of comfort...
 
Sometimes, I think though - how can I help other people if I can't even help myself...how can I make other people happy if I'm not happy myself and people detect that and don't want to be dragged down.  It's a nightmare - like the side effects that Chantix can give you - along with excessive gas - UGH!
 
God Bless All Of You for your loyal support!
 
* * * * * * * * *
 
 
hello...please bear with me as I'm new to this and curious to see how it works (chat room)...
 
I guess I'll use this as a test to see what happens next. 
 
I've had two spots on my face for a few years now. I've been to many dermatologists (when funds have allowed as no health insurance).  Some thought I had rosacea, some cysts, some acne vulgaris, some discoid lupus.  I had a skin punch done last year at a whopping $1000 price tag that came back negative.  Just last week I had another done and it was positive for discoid lupus.  A few days ago I had some blood drawn for the SLE tests and am waiting for those results. 
 
I have been to many websites relating to discoid lupus but I'm still not sure if that's what I have.  I have pimples with this lesion (on my chin) and nothing I can find on these sites refer to the lesions being pimple-like.
 
Also, the dermatologist that did the most recent sample prescribed some Clobex lotion and told me to load it on the lesions (since I've had them a few years now).  I also cannot find any information about how long it takes for the lesions to subside after beginning this type of treatment...and if this one lesion on my chin can actually be pimple-like...
 
any takers on a response?
 
Thanks!
 
 

Post Edited (sunmiss) : 3/18/2007 8:06:00 AM (GMT-6)


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 3/17/2007 6:43 PM (GMT -7)   

Hi Sunmiss, welcome to the forum.

Could you explain a little more what your lesions are like? Are they itchy, burning etc. Also do they get worse and if so when. Are they always there? Sorry to ask so many question but it's easier to try to help. Are the lesions your only symptoms? I get many lesions from my type of lupus. Mainly on my hands and feet though. They start off as small raised lumps, then they spread and become very red. they hurt intensely. Look forward to hearing more x x


Chillblain Pattern LE, tachycardia, unknown bowel problems, migraines.
One gorgeous daughter age 5 after many many IVF attempts


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/17/2007 7:56 PM (GMT -7)   

Hi Sunmiss,

  Welcome to the forum. I've never had the discoid lesions, but I do get rashes that are raised and itch when I'm in the sun. Are yours just on the face and nowhere else? I was reading earlier about discoid lupus at www.lupus.org  You may have already been to that site, but it has some great info there.

  From what I read if it is just confined to the neck and up that it is very unlikely that it will turn into SLE. Do you have any other symptoms? I think I'm asking the same questions Lion did..lol.

  I'm glad the doctor ran some labs to check for SLE. Hopefully, you will have more answers then. I hope the lotion helps heal the lesions you have now.

  Please feel free to ask all the questions you want. We will help you in anyway we can. We have a great group here! Keep us updated on this and take care. You will be in my prayers.

                                                               Babs


 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


lion00
Regular Member


Date Joined Aug 2006
Total Posts : 334
   Posted 3/18/2007 12:06 PM (GMT -7)   

Hi Sunmiss,

From your description, to me, the lesions on your face don't sound much like discoid lupus, although the thickening of the skin (wart like) may be. The spots on your fingers and toes could well be discoid, or another form of lupus, this is what mine started like, small red tender spots on the fingers and toes. If you do a search in google for discoid and chilblain lupus, view the pictures. There are so many different types of lesions. The blood work should give you some ideas whats going on. Take care x x


Chillblain Pattern LE, tachycardia, unknown bowel problems, migraines.
One gorgeous daughter age 5 after many many IVF attempts


montecarlo
Regular Member


Date Joined Feb 2007
Total Posts : 235
   Posted 3/18/2007 4:42 PM (GMT -7)   
yeah  Hey honey!!Welcome to the forum!! I am so glad you found us!!! I have discoid lupus,and have found my ''entity'' likes to fake me out ,it did look thick and bumpy,red ,painful,itchy,basically really gross......I had it for 2 yrs or so before they figured it out...it's a mystery to some,but ,I too thought it was acne and fiddled with it,no such luck,after several creams/ointments,it was still there,had biopsy and injections(22 so far),(13 1st time,9 second crack at it),have been using ratio-amcinonide,didn't do much at fisrt,but seems to be kicking in a bit-doesn't look so gross now,but can feel it like a burning/moving sensation...does yours feel all weird too? I find it hard to describe,that's why I call it my entity....nasty critters they are!
  you had alot of info in your post,so I will reread it,but there is hope! I had neighbors tell me they noticed the butterfly rash for 5+ years,here I was thinking I had color..haha.lol! one is in the medical field and is recently separated,so didn't see him much,but said on the weekend he was scared ,and hoped for the best-was the 1st one to help me with referrals though.
 Discoid is hard to deal with,especially when acne is never a problem,I  never had teen acne so I thought it was one of those ''adult''cases-I actually was hoping for ''puberty'' to finally kick in-sorry always wanted the big boob thing to come my way!
ask your dermatologist if there are injection treatments available,because within 2 weeks there was a difference,it wasn't as raised or red and did shrink ,but is possible it retracts and becomes a ''dent''. I have the ''wolf bite''-actually looks like a puncture wound,and is scared.I guess I have a hard time because I was a model for many years,and look back at old photos and want to cry,I never would have thought this would happen,especially since it is on my eye as well....looked like pink eye at first,it's mostly on the rim  and looks like a chronic infection.
 My dear,I am so sorry,this bites,I hope you get an answer,knowing does help,but keep seeking out other doctors until you get an answer,I don't know what to say,I feel saddened by your health situation,but we are ALWAYS here(24/7),some one was wise to tell me to take pictures,it helps.
 We are all on common ground,we understand,love,and pray,I am so very sorry,but am also thankful you are reaching out,and welcome you again with open arms,if you have specific questions,I hope I can help(you likely were specific,but forget alot of what I read before I am done...do apologize for my brain fart!)...take care,chat soon!
                                crystal yeah yeah yeah yeah yeah

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/26/2007 8:37 PM (GMT -7)   
Bump back up for mjcjj!!!

 Co-Mod: Lupus Forum
 Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
Meds:Arava,plavix,aspirin,protonix,gabitril,zanaflex,xanax,
mirapex,advair,foxamax,donnatal,folic acid.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Peaceful Harpist
Veteran Member


Date Joined Apr 2005
Total Posts : 679
   Posted 3/27/2007 9:18 AM (GMT -7)   
Hi and welcome! I have both SLE and sub-cutaneous lupus. I get pimple/waterfilled "things" on my fore arms and I have some on my neck. These are areas were I used to get a lot of sun exposure. They itch and burn like crazy. I use an anti-biotic cream and a band aide when I'm out in public. They have left me with scars. I had acne when I was younger. Now I have rosecea...which also itches. I use azelex cream 2xday and a retinol cream every other day that my dermo. prescribed. I have redness around my nose and on my neck. My dermo. had me on daily anti-biotics. My rheumie asked that I be taken off of them as some anti-biotics on a long term basis can cause a flare or increase lupus symptoms. So I am off of them. Take care and blessings, Cecelia
Rest well, nesting is healing,  peaceful harpist 
 
Lupus(both SLE and Sub-Cutaneous Lupus),degenerative disc disease, multiple conective tissue disorder,hypothyroidism,severe anemia,luekopenia,asthma,R.A.,Raynaud's, Sjorgrens's and Rosecia, vit. D deficiency.  Medications: Plaquenil 400mg. day, Tramadol 100mgs 2-3 day, Neurontin 300mgs day, effexor 225mg day, Ativan 1mg 1-3day, Preacid 30mg day, Metroprol 25mg day, Levothyroxine 50mg day, Mobic 15mg day, Hydrocodone 500mg as needed every 4 hrs., Azelex Cream 2 x day, vitimin D supplements, iron/dextran infusions every 3 monthes and sun screen.New dx: fibromyalgia
  
                     
 


montecarlo
Regular Member


Date Joined Feb 2007
Total Posts : 235
   Posted 3/27/2007 6:11 PM (GMT -7)   
I have discoid as well,and most days burning that just seems to get worse each week with my whole face looking sunburned.
My lesion has been itchy and painful,I call it the ''entity'' because it seems to have a mind of it's own. Make up makes it worse,and I bought ''Vichy'' -60,sunscreen(block?) today,am nervous because everything seems to make it flare again,I'm hoping this will help,flourescent lights are a pain,and all doctors offices seem to have them.
If anything could swell,I wish it were breasts,that I could live with,that I would welcome!LOL I doubt my husband would mind!LOL! Each time I get something brewing on my face I wonder if it is a new entity,I get really freaked about it ,I wonder if people stare at it,they sure do seem to notice it.
My lesion was called a wolf bite,it looks like a scar from a dog,weird,but as a young girl(3 or 4) I was bit by a mountain dog that was a wolf/husky cross-same side and same area,I watch my kids like a hawk for any weird things now,I have one boy that gets a rash similar to the butterfly/malar,Ihope he is just flushed.
Do you have pain in yours?Mine was raised and blood red before the injections,and still gets red,but is burn pink for now,but the burning in that spot never seems to go away,so I was wondering about yours. It looks worse if I am even in my vehicle or by a window,tried using bandaides,but the glue is a new problem too,so what do ya do? crystal

Shandi
New Member


Date Joined Mar 2007
Total Posts : 3
   Posted 3/31/2007 6:10 AM (GMT -7)   
Posted this on the other thread but thought I would put it here too just in case anyone missed it and wants to give it a try



Hi there,
just saw this,I have had discoid lupus for some years now and have not had an attack for a few years except I noticed a small mark starting near my elbow and it reminded me how annoying it is.
Ok the only thing I found that worked(now dont laugh) is cornflour
Yes ordinary household cornflour rubbed in by itself a couple times a day
I had cortizone creams I had creams that I cant even remeber what they were and these things kept getting bigger and would last for months....
I read in a newspaper that cornflour was good for rashes and figured I had nothing to lose so I gave it a go and it actually worked,it stopped the lesions from growing and instead of months they were gone within a couple weeks.
I dont know that it works for everyone but give it a go,I am so glad I did

Tempeststar
New Member


Date Joined Jan 2012
Total Posts : 1
   Posted 1/19/2012 1:47 PM (GMT -7)   
I have Discoid Lupus as well, and am showing signs of RA. To say the least I was massively frustrated with doctors after 10+ years of being told all my problems were in my head or "because you are fat" and yes a doctor actually used those word to me. I finally found a doctor that didn't give me a BS line about my being too young to have this or that. I found out just last year that the lesions on the back of my head near where my skull and neck meet were discoid. Since then I have been put on Plaquenil for the lesions which seems to lessen there reaction, when I do have them they don't last as long anyway. I was also put on Triamcinolone Lotion for when they get bad. Only times I notice a significant flare up is during "the time of the month" or when I am really stressed out.

I haven't worked in over 2 years because I was doing a job that was outside and just kept feeling like crud. The more time I spend in the sun the nastier I feel. I have always been light sensitive so I've always worn sunglasses but having to buy big hats and wear sleeved shirts in the summer kind of irks me.

Anyway I wanted to add my 2 cents because I know how frustrating it can be to feel nasty have things going on with your body that just doesn't seem right and having to fight with doctors to be listened to.

mgross12
New Member


Date Joined Dec 2013
Total Posts : 1
   Posted 12/17/2013 5:16 PM (GMT -7)   
Hello all,

I realize this may be an old thread, but I am new to the site.
I had some questions on the discoid rash.
I have the "butterfly" rash definitely on my cheeks and bridge of nose. It used to just be this area but as time went on the rash has seemed to spread? When I get stressed, upset, drink alcohol, or have caffeine. It also comes out when I am in sunlight or in the shower.

Does your rash itch? and is the rash always raised? My face seems to have gotten patchy but everywhere else it is just red and warm. It does not itch but I can feel it.

I had a family friend suggest I look into lupus..my symptoms include:
leg pains for years...like an ache...but now have the same ache in arms
butterfly rash
photosensitive
hands are always cold

I did get a ANA test and it came up neg

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14418
   Posted 12/17/2013 5:26 PM (GMT -7)   
Have you been to a rhuematologist?
There is a list at the top of the forum with the eleven indicators of lupus. You need to only match four of the eleven to be diagnosed.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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