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  • Having Lupus and not positive tests for Lupus

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    Old 11-11-2006, 02:57 PM   #1
    redroses45
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    Angry Having Lupus and not positive tests for Lupus

    In Oct. of 2005 I had six Pulmonary Embolisms. It took them several tests and they said it was just by avcciedent that I got all these clots. I have had psoriasis since I was 13 so they new I was prone to Auto-immune diseases. All the tests kept coming back neg. I have been in the ER maybe 35 in the last years due to: Chest pain, pluerisy, possible clots, severe swelling in all my limbs and face. I found one internist who research the possibility of having negative tests and still having the disease.
    She said 1% of patients don;t have positive tests. I was relieved, but because I have psoriasisthey can;t treat the Lupus. Apparently Lupus medications make Psoriasis worse. Argh! I am still swelling and in extreme pain all over. I have chest pain and have to take blood thinners everyday. I get the cute rash and mouth sores.
    Very frustarted. I moved out of state so now i have to find a rhumie that will believe me about the Lupus. Hopefully Texas doctors are a bit more understanding then Cali doctors.

     
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    Old 11-11-2006, 08:32 PM   #2
    VeeJ
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    Re: Having Lupus and not positive tests for Lupus

    Hi, RedRoses, For which tests are you negative? Were ALL the specific antibody, complement, etc. tests done? There's a "sticky post" at the top of the Board about test results that has a resource listed. You could go there & check to see if all the tests listed have been run on you.

    I was always negative for ANA, but turned positive for anti-Ro. Based on the negative ANA, my local drs. said I could not have lupus. Years later, I found out that I'd had a *different* kind of lupus called "SCLE" all along. In this small-ish SCLE group, maybe 70% have a positive ANA, but I was in the 30% (or so) who are negative---which REALLY frustrated my getting answers!

    Have you ever had your (apparent) psoriasis biopsied, including immunofluorescent tests? In that same resource I mentioned above, the one cited in the "test results" sticky post, there's good info on lupus rashes. FYI, there's an SCLE rash that DOES INDEED look like psoriasis, to the naked eye. It's name is "psoriasiform", but it's a LUPUS rash. (I had the other SCLE rash, the one called "annular".)

    Another thought: by far the best dermie I saw was a dermatopathologist my rheumie sent me to. (That's a dermie who is also a pathologist, meaning does his own labwork.) He ran circles around the 5-6 other dermies I'd tried.

    I was told that people with SCLE are also "eligible" for butterfly &/or discoid rashes, in addition to getting SCLE-specific rashes. So the butterfly doesn't NECESSARILY mean you have SLE-lupus---you could have another form, perhaps, like SCLE, subject to verification by rash biopsy, bloodwork (anti-Ro is seen very often in SCLE), etc.

    Give a holler if anything here rings any bells for you, OK? You must be awfully frustrated! I really hope you can get some top-notch experts to help you & soon. Sincerely, Vee

     
    Old 11-12-2006, 06:00 AM   #3
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    Re: Having Lupus and not positive tests for Lupus

    Veej,
    I believe all the typical tests for lupus. DNA tests, ana, Nsaids... Thoses are the ones i remember. I didi have a positive ANA once while the clots were still in my lungs. DOes you Lupus come with night sweats and extreme swelling? ALso, I think my psoriasis is psoriasis. I looked up what you suggested, and it looks very different. I do however get that SCLE rash on my face. Hense the butterfly mask. Also, do your eyes swell when you sleep? Sory for all the questions, but I am slowly realizing that I have probably had Lupus for a longer time then I thought. Especially if the psoriasis isn;t psoriasis.

     
    Old 11-12-2006, 08:08 AM   #4
    VeeJ
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    Re: Having Lupus and not positive tests for Lupus

    Hi, RedRoses. I was told that even the best dermies can't tell for sure what a rash is solely by appearance. Under the microscope, they look for things like changes to the borders between skin layers, for too much or too little of certain cell components, etc.

    Then they can subject the skin to immunofluorescent stain tests, if lupus is a possibility. Lupus rashes do something unique under these tests: the "immune junk" that *shouldn't* be there lights up in a characteristic way, proving that it's some kind of lupus rash. However, they can't tell WHICH kind of lupus rash it is, meaning SLE vs. SCLE vs. discoid (etc.) But at least they know you have *some* form of lupus...

    ...least that's how my city drs. explained it all to me. I'd had numerous skin punches done, but no dermie or lab had ever thought to do the 2nd level of stain testing. They looked under the microscope, quit, and wrote up useless reports.

    Another thought: Have you looked up PSORIASIS using the search box above, to see if what you read fits what you've got, or not?

    Best wishes to you, from Vee

     
    Old 11-12-2006, 09:43 AM   #5
    redroses45
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    Re: Having Lupus and not positive tests for Lupus

    Veej,

    I have been involced with the national Psoriasis for many years. I used to have psoriasis over 85% of my body. This year I got approved to use Enbrel shots and for the first time in my life only 2% is covered.

    I do think it could be Lupus, but Enbrel is supposed to make Lupus worse and that is why they wouldn't try it, until I begged them.

    I had a biopsy done and they said that the spot they cut was not psoriasis, but something similar to the cells that surface when you get a bruise. Weird. ANyway when I finally get a doc here in Ft. Worth I will ask them to do the stain test. Thanks

     
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