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