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Thread: Discoid Lupus

  1. #1
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    Default Discoid Lupus

    Hi larry here, found your site and thought to drop a line. I have discoid lupus, started at 18 and some guy I was working with said
    hey, whats that red mark on your head, me being young said dunnno! After a month went to derma. and they said here just put some of this on it
    ( I still dont know what it was). after a year went to another derma. this doc took a bio. of the spot and came back, yep lupus. Since then I have had flare ups almost like clock work every 5 yrs and am going though one now. The only thing is that its in the scalp and man every time I lose a patch or two, You know what that does to a person? Well im upset and am rubbing steriod cream on my scalp 3 times a day hoping not to lose alot of hair. OK Guys well im finished venting!!!!!!!!!! It looks like a nice site so if you guys dont mind ill stick around. And please if you have a story lets share because were all in this together!

    Larry

  2. #2
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    Default Discoid Lupus

    Hey Larry...I too live near PHILLY and have BOTH SLE and discoid.....try using DIPROLENE GEL in them....they dry out quick and heal rahter well with this medecine....well at least it does for me but then again most of my leasions are on my hands...and BTW WELCOME
    I hope you are doing well and the DIPROLENE helps!!!!!!

    stjames

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default Discoid Lupus

    Larry; I know too well what it feels like losing your hair due to the hair lesions. I have the rare lupus which is a combination of discoidal and systemic (great huh?). As a woman, the hair loss was excrutiating because I was completely bald and had to wear wigs for over a year. When the lesions healed, my hair grew back, but it was not the hair I once had :-)
    The anti-malarials are what worked for my lesions, have you tried those yet?
    Hang in there and know that we are here for you!
    Saysusie

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    Default Discoid Lupus

    HEY SUE...Most of my leasions are on my hands and finger making them very sensitive and causing an extreme amount of scar tissue rendering them barely usefull and I'm a guitar player!!!!!!! WHat anti malarials worked for you?? Plaquenill???? I would do anything to get these thigs to heal they are embarrasing,hurt likehell and ar just a constant nusance. A Bipsy showed that inside we these splinter types thingeees that were made of IRON and WHITE BLOOD CELLS...but they come fom under the skin and push up making it impossible NOT TO break them open just for the release. ANy ideas???? It seems you and I have alot in common here now we find we BOTH have SLE and discoid...do ya think there is a reason for that...so common denominator??

    stjames

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    Default Discoid Lupus

    Larry; Yes, I used plaquenil. It took several months before I began to see results and that was because, like you, the lesions were so deep and so hard. The healing did happen from the inside out. Many of my lesions were on the bottom of my feet which meant that I COULD NOT WALK - the ones on my hands prevented me from even being able to hold a toothbrush because it was so painful. My husband had to brush my teeth, comb what little hair I had, place my wigs on, dress me and practically carry me around everywhere. I was so happy when they healed as they were debilitating. I even had the ulcers in my mouth which prevented me from eating! Ask your doctor about prescribing some anti-malarials for you ASAP!
    We have even more in common - I am a musician also. Actually, I am a vocalist!
    Let me know how it goes!
    Saysusie

  6. #6
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    Default Discoid Lupus

    SUE...what instrument(s) do you play????

    I know what you mean about the leasions healing from the inside out...the last BIOPSY showed that the leasions had large amounts of white blood cells and IRON?!?!?!?!?! They are so embarrasing when I go out I ususally cover my hands all the time or I just don't go...it's a personal stigma I attached to having these leasions..I feel like a LEPOR...they make me feel dirty

    stjames

    [This message has been edited by stjames13 (edited 11-06-2002).]

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