Discoid Lupus Erythematosus

[Stacey [Pinkdrgfly]]

Has anyone with Discoid Lupus Erythematosus had a biopsy done of your head sores. A friend of mine told me to have the sores on my head biopsied. I've had these sores for years and they flare when feel really weak and sick. Dermatologist years ago never knew what they were. I think they told me it was psoriasis. I need to have mine biopsied but I don't know what doctor does it.

x0x0x
Stacey

[Ginner]

Yes Stacey I have had these goofy dang sores on my scalp for at least 9 yrs and they flare when I flare.

I have had them biopsied, puncture biopsy of two that were raised, hived up or whatever, they get like welts. by my pcp...(by the way i am changing pcp soon, i think she is not assertive enough) and the tests came back clear..... well clear, not cancer anyway.
BUT ...doesn't it depend on what kind of tests they run on them also?. I KNOW these sores are associated with my illness but i have not been checked for lupus.

I also in the past 2 yrs have teeny tiny hard dots, like sand, under my skin noticed mostly on my hands. And , I have these raised up round dry spots all over me that peel away...what the heck and are like my scalp except they do not welt up like hives and hurt. Of course I cannot leave my scalp alone.

AND I figured it was cancer because it WILL not ever heal completely. Gets dormant i guess you would say and then welts up.

I also had a dermatologist save dermatits but he did not run ONE test. That was prob 8 yrs ago..

I have had always had clear skin until i got feeling ill.

I see an ENT this Tues and I have my list ready so hopefully he can lead me in the right direction.

hugs
ginner

[Stacey [Pinkdrgfly]]

Hi Gin,
Opps maybe years ago it was dermatitis not psoriasis. Heck it's been so long I don't remember.
What is punctured biopsied? Do your sores go through a long process from the time they appear to when they heal?

[Joey]

OMG! I have sores on my head all the time, but never realized it might be part of all this autoimmune crap! What are the sores like?

[Stacey [Pinkdrgfly]]

Hi Joey,
mine can be up to the size of a dime. they hurt and feel inflamed .. they seem to last forever and then at the end stage of them healing the skin flakes off for a long period of time.
I've never really gotten a good look at them because I have so much hair.

[Joey]

Thanks Stacey. They sound similar to what I have on my head, but I also have OCD and can't stop picking at them! So mine turn into scabs..... so disturbing. I am def going to mention this at my appointment with new Rheumy. Thanks.
This site is so helpful!
Joey

[Stacey [Pinkdrgfly]]

Hi Lora,
Ya, after a few of these replies I'm beginning to wonder too.
Mel is your sister?? I will look for her! Aww I'm sorry about your mom. She had skin cancer on her head?
I have had virgin hair up until a year ago...just to hide the grey. I could never use any hair products in my hair because they would really irritate my sores.

[Lora]

Hi Stacey,
Aww, TY for your condolances on my mom.Towards the end of my mom's life she was dx with head,lung and breast cancer. She also had ALZ. Looking back on her life and things she experienced we have realized she had FMS. She had Crohns disease then ALZ and then the final cancers. I am allergic to sulfur and if u look at most shampoo they have that ingredient but also I was watching the Drs. show on TV and they said that the hardware stores make a chloride filter for your shower head and to use that and see if it helps. The drs. also said that if u having a scalp problems {hair falling out} ususal it is due to an illness they were referring to something being wrong inside your head/body {tumor wise} ect. and to get it check out. FYI. I think they need to look into this as being one of the many of symptoms of this illness. I hope the filter helps ya;;;let us know! Soft hugs, Lora

[Lisa Zaremba]

Hi Stacy,

Wow, I can't believe so many people have had the same problem. I've had head sores for the past year. They just won't go away!!! I had a dermatologist do a biopsy, and he dx. me w/ folliculitis (inflamation of the hair follicles). I don't know....that should've gone away a long time ago. I guess the head sores are probably one of the least of my issues, so it's not one I've put much effort into. I have been thinking about getting a 2nd opinion though. Good luck w/ the doc.

~ Lisa

[Geoff Thomas]

Hi Stacey,

I suppose this is an answer/reply in reverse.

In 2003 I didn't know what was happening with me. I was visiting all these doctors who didn't know what the lumps were - I couldn't call them sores, as they didn't hurt - but they weren't pretty!

Anyway, my Mom/Mum dragged me along to her Dermo who did a biopsy and cutaneous/discoid lupus was diagnosed.

I'm sure most Dermatoligists would now have a great understanding of lupus, discoid and related issues A few phone calls and asking some questions could point you in the right direction to finding the right person in your area.

Being the 'typical male' I was reluctant to seek advice at first, but I've since discovered, if your body's telling you something, do something about it.

(now I have all my lupie sisters urging me to do so!)

But then again, isn't it weird how we all seem to suffer in our own ways, but all have similar issues?

I'm with you all and wish you the best,
Geoff.

[colsbutterflies]

I dont know what it is, but i just found one on the top of my head. I cant see it, but its raised and dryish. Doesnt itch. Im not even sure how I found it! I guess becasue it is so hard to even wash my hair. I keep fogetting to mention it to my doctor (Reumatologist).. .Do u Know what it is??

Colleen from Philly

[paula stevenson]

hi stacey my name is paula, im new to this site and also new to
discoid lupus! (unfortuantly). my discoid lupus affects my face i,ve never had any on my head, your doctor will need to refer you to a dermatolgist and they will be the ones who are responsible for your biopsies hope this is in some way helpful to you. xx

[MARCELA]

I've had a biopsy done of my head sore about 6 yrs ago, thats how i found out I had discoid lupus. I was told it was psoriasis at first also by a Dr. I saw at a clinic that I used to work for and he told me just to use dandruff shampoo, then a couple yrs later I went to a derm and he did the biopsy and told me what it was.