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Thread: subacute cutaneous lupus with negative lupus band test

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    Default subacute cutaneous lupus with negative lupus band test

    hello everyone i was wondering if any of you have been diagnosed with this type of lupus just to compare symptoms and such ....i also wanted to know if there is a high percentage of people with this type that affects the skin that goes onto having the SLE type .hope everyone is doing good . and thanks

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    i was diagnosed with sle outright.
    but i believe tgal might be one to talk to.

    hope you find someone.
    we are all here for support.

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    thanks so much i just dont know a whole lot about this type and i am a little confused i dont know if it is all lupus or if there is just a skin type of lupus . i do know that my organs were checked and they were fine .when i asked my dermatologist i said ok so this is just skin lupus and i dont have the one hat affects the organs he said yes we are treating skin lupus and i said so i dont have the other kind he said he cant say that but he checked my organs and they are fine so it is a guessing game right now i guess it is a little frustrating trying to understand it all it is such a confusing disease.. i know i get muscle and joint pain and i have 3 spots on my face and starting with a little rash on the bottom of the legs at the back sorry for rambling on here i just dont understand it all .im am glad that i found this site there are a bunch of nice and understanding people here .

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    Quote Originally Posted by Tammy2011 View Post
    thanks so much i just dont know a whole lot about this type and i am a little confused i dont know if it is all lupus or if there is just a skin type of lupus . i do know that my organs were checked and they were fine .when i asked my dermatologist i said ok so this is just skin lupus and i dont have the one hat affects the organs he said yes we are treating skin lupus and i said so i dont have the other kind he said he cant say that but he checked my organs and they are fine so it is a guessing game right now i guess it is a little frustrating trying to understand it all it is such a confusing disease.. i know i get muscle and joint pain and i have 3 spots on my face and starting with a little rash on the bottom of the legs at the back sorry for rambling on here i just dont understand it all .im am glad that i found this site there are a bunch of nice and understanding people here .
    Good evening! First thing that I want you to remember is that I am not a doctor so I can't tell you about yourself personally. SCLE Lupus is considered the midpoint between Discoid Lupus (skin) and SLE. SCLE can be more then just skin but it usually does not involve any organs like SLE. Sometimes SCLE Patients actually show many of the symptoms of lupus. Joint pain, fatigue, rashes and some other symptoms of SLE may be present. Although it it can make you feel very badly it usually can't damage the organs so it is seldom life threatening.

    Can you move on from SCLE to SLE? That is a difficult question. For some people it is simply that the bloodwork isn't showing SLE yet and not that SCLE progresses to SLE. The majority of people with SCLE stay with that. Some people, like me, end up with SLE and organ damage. The good part is that treatment of SCLE is the same as the first line treatment for SLE. What that means is that no matter what kind of Lupus it ends up being you are treated with the right meds.

    I am going to post a link that will give you more information. I hope this all helps

    SCLE Lupus
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    thanks so much for the link and the info i know your not a dr but you sure made me feel a little better lol i will see where i am at on wed at my appointment and ill be sure to let you all know

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    Quote Originally Posted by Tammy2011 View Post
    thanks so much for the link and the info i know your not a dr but you sure made me feel a little better lol i will see where i am at on wed at my appointment and ill be sure to let you all know
    Good luck at your appointment Tammy

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    thank you Tammy

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    Quote Originally Posted by tgal View Post
    Good evening! First thing that I want you to remember is that I am not a doctor so I can't tell you about yourself personally. SCLE Lupus is considered the midpoint between Discoid Lupus (skin) and SLE. SCLE can be more then just skin but it usually does not involve any organs like SLE. Sometimes SCLE Patients actually show many of the symptoms of lupus. Joint pain, fatigue, rashes and some other symptoms of SLE may be present. Although it it can make you feel very badly it usually can't damage the organs so it is seldom life threatening.

    Can you move on from SCLE to SLE? That is a difficult question. For some people it is simply that the bloodwork isn't showing SLE yet and not that SCLE progresses to SLE. The majority of people with SCLE stay with that. Some people, like me, end up with SLE and organ damage. The good part is that treatment of SCLE is the same as the first line treatment for SLE. What that means is that no matter what kind of Lupus it ends up being you are treated with the right meds.

    I am going to post a link that will give you more information. I hope this all helps

    SCLE Lupus






    can i ask you how long it took you to go from scle to the other sle if it is too personal of a question im sorry and you dont have to answer i was just curious if this is a fast progressing disease thanks in advance

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    Quote Originally Posted by Tammy2011 View Post
    can i ask you how long it took you to go from scle to the other sle if it is too personal of a question im sorry and you dont have to answer i was just curious if this is a fast progressing disease thanks in advance
    No need to worry about it being to personal. That is what we do here. Feel free to ask whatever you want.

    As for how long it took me, well that is a difficult question to answer. I had been sick for a long time but I didn't go to doctors and by the time I did I was in pretty bad shape. When I walked into the Rhuemys office the first time he said "classic lupus". put my on Plaquenil and a low dose of steroids. He then sent me for new labs because my GP didn't do all of the ones he wanted. When I went back in two weeks he said "Not SLE but SCLE". Told me it wouldn't touch my organs and sent me on my way. I must admit that I felt better knowing that my organs would be ok but I wondered why my blood pressure was so high (238/168 I think. 100% sure on top number and bottom is close to that), why I couldn't breathe, why my memory was fried so much that I made my boss double check my work, etc etc. I had been on a really bad spiral for over a year. It just seemed that I kept getting worse and worse quickly. '

    I started having seizures and they tried to tell me that it had nothing to do with the Lupus because it wasn't in my lupus (yeah right). In and out of the ER for different reasons, heart, lungs, brain etc. Finally I found a doctor that looked at me and said "Of course this is SLE." It was about a year and a half from my first ER visit and SCLE diagnosis.

    I believe I had SLE to begin with. I don't believe that I ever had SCLE I simply believe that most of my doctors didn't really understand how to diagnose Lupus. they were waiting for all of the bloodwork to come out the way they wanted and the same time and it doesn't happen that way all of the time. Too often I hear stories about others going through this and it breaks my heart.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    thank you for telling me your story see with me i havent seen any other dr about it just a dermatologist he was treating me for rosacea for about a year then he did a biopsy on one of my lesions and it came back SCLE with a negative lupus band test so this is all new to me i go to him on wed.. do you suggest any questions i should be asking him i was thinking of asking what exactly showed SCLE was it in my blood work or just the biopsy . thanks again i really appreciate you sharing your personal story with me it helps me to understand things a little better thank you

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