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  • ana 1:1280 but "definitely not lupus"

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    Old 08-26-2014, 05:25 AM   #1
    angryt
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    ana 1:1280 but "definitely not lupus"

    I went to my current rheumy, with an ana of 1:640, 6 years of pain and sun sensitivity and the most recent ana is 1:1280 which he acknowledges is extremely high. But all other antibody tests are negative as is my rheumatoid factor so he says I definitely don't have lupus or ra. He is starting me on hydroxychloroquine but only because of my joint pain he says. He said the ana is likely hereditary...i know a diagnosis doesnt need all the other antibodies, but to be fair to him, he is the best doctor I've had in years, but im guessing without another positive antibody test im going to remain in the unknown category, at least for now. He is leaving so I'm seeing someone new in 12 weeks.

    What other could cause such a high ana, these symptoms and negative antibodies?

     
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    Old 08-27-2014, 12:38 AM   #2
    VeeJ
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    Re: ana 1:1280 but "definitely not lupus"

    I'm just a patient, so please read in that light!
    1. I too suspect that 1:1280 is substantially higher than the elevation seen in people whose ANA elevates due only to a family tendency. You could ask what numbers are typical for that scenario.
    2. You could ask if a positive ANA can *precede* additional symptoms and the appearance of ANA "subtypes". (I've read it can.)
    3. You could ask which specific AB tests were run & when, and whether all were run multiple times, to make sure they're all there. I think some fluctuate more than others, as flares come and go, so timing of bloodwork can be crucial.
    4. On your CBC's and Metabolic Panels, what anomalies have occurred? (Almost all people with SLE have some, I've read.)
    5. Has urinalysis been done & repeated? Anything show there?
    6. What kind "photosensitivity" do you experience? Any rashes that could be lupus-specific? (A specialized 2-step skin biopsy can look for deposition of "immune junk" between dermal & epidermal layers. It's called a "lupus band test", and may even be done on people without rashes.)
    7. As for what, other than lupus, this might be: good question! Have your thyroid levels been checked? Do you have any signs of Sjogren's? (I think very high ANA's are typical in SS.) As for RA, I don't think a positive RF is "required"; and to vet for early RA, the anti-cyclic citrullinated peptide AB test (anti-CCP) can detect RA earlier in the game. In MCTD (Mixed Connective Tissue Disease), anti-RNP alone is positive, without any other ANA subtypes. In UCTD (Undifferentiated Connective Tissue Disease), it can take several years to evolve into something more defined (lupus, RA, Sjogren's, scleroderma, MCTD, etc.), and for some patients, problems actually resolve without any permanent Dx.
    Hmmmmm.... I hope others add more. On the one hand, not having a more specific Dx is unnerving, but it's great that your rheumatologist is taking this seriously (not all would). Also, you could borrow lupus books from your library: a world-famous rheum who used to practice (maybe still does) in London has written books for patients that cover lupus & its close cousins. Wishing you luck & looking forward to updates, Vee

     
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    Old 08-29-2014, 05:55 AM   #3
    angryt
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    Re: ana 1:1280 but "definitely not lupus"

    thanks for your detailed reply.

    he did say that my other antibodies could become positive over time, so they will keep testing. I think they've all been run about 3 times and I don't think there has been any borderline ones.

    CBC wise has always been borderline/normal. When I first got ill my white count was actually borderline high (13ish) over time it has dropped to borderline low 3-5. I have had borderline high liver panels, high inflammatory markers etc, but nothing MAJOR. Most doctors have said they are fine, some have said they are all too borderline to be fine.

    Urinalysis shows repeated mixed bacterial cultures, leucocytes and low levels of protein and often invisible blood, but all kidney function tests are normal.

    Photosensitiy gives me a clear butterfly rash, an itchy rash all over exposed areas - especially arms and hands, but the worst is the exhaustion that drains me and then the next day my joints will be in agony, I will literally not be able to walk and my mental function is very low. I feel awful with even a little sun exposure.

    I do have signs of sjorens, my eyes are painfully dry, hurts to blink and if I dare rub my eyes I can be screaming in pain. I use gel regularly I also have dry mouth which causes a huge build up of plaque in weeks and regular mouth infections.

    I also have opportunistic infections like widespread yeast infection - not candida, a strain of yeast that should only affect those with compromised immune system.

    I get ulcers in my nose after sun exposure too, and mouth ulcers.

    All thyroid function is normal, all other panels are normal, my cortisol level is slightly raised.

    I'm going to read some books on lupus, and hope that the meds help. I've just started them

     
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    Old 08-29-2014, 07:51 AM   #4
    VeeJ
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    Re: ana 1:1280 but "definitely not lupus"

    Hi. WBC can depress in lupus & that may be (partly) why you get repeated infections. Re: photosensitivity, sounds like you should be limiting midday sun; also wearing sunblock, clothing that covers arms & legs, and wide-brimmed hats made of dense material. (I love the outdoors so I hate all that, but I quickly concluded there's no temporizing with photosensitivity.)

    Hydroxychloroquine is slow-building. It can take upward of 4-6 months to reach its full effect, but that doesn't mean you won't get SOME improvement much earlier. (Hope so.)

    Maybe your dentist can recommend a special mouthwash to help with the dry mouth & help ward off plaque? (I have my teeth cleaned more often than usual, just for this reason. I'm an anti-Ro lupus patient, and I tilt to a certain group of symptoms, incl. dry mouth & eyes and huge photosensitivity.)

    I'm sorry this has happened but really glad you're getting close attention and regular follow-ups. It sounds to me like you're in good hands with your rheum, and that can make all the difference. Keep us posted on how you're doing, OK? With my best, V.

     
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