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  • Negative ANA, SMITH but positive DsDNA

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    Old 12-21-2013, 07:57 PM   #16
    VeeJ
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    Re: Negative ANA, SMITH but positive DsDNA

    Hi. Now I'm really curious. What did your rash all those years ago look like & feel like? Do any of the rashes described in the "sticky post" on skin problems ring bells? I'm curious because I've never had a malar, either. I had 8 years of the annular form of SCLE, and didn't that befuddle my suburban doctors! The two SCLE rashes correlate strongly (but not 100%) to the anti-Ro auto-antibody, btw. (Anti-Ro is also seen in Sjogren's.) Those are the ony two lupus rashes, of which I'm aware, that is, that correlate to a specific AB.

    Lupus loves hormone shifts, per my rheumatologist. I had my first big hit at 13, it lasted a year, but I didn't get answers for many years. (And maybe it wasn't "full-blown" lupus for some years? I'll never know for sure.) Anyway, during perimenopause, all hell broke loose.

    Vitamin D deficiency is common in the general population, I think, but even more common in some of the AI's. Mine fell to 10 at one point, so I now take 2000 IU's daily. I was warned not to take too much (toxic in massive doses), plus I've had kidney stones, so I try to keep my level on the low end of the desired range.

    There are meds, btw, that induce a form of lupus called "Drug-Induced Lupus Erythematosus". Lab hallmarks of DILE are anti-ss-DNA [single-stranded] and anti-histone. Typical symptom is pain; major organs are affected only very rarely. Cholesterol & BP meds are common culprits. (For what that's worth...)

    Also, i think cholesterol meds are famous for causing muscle pain, meaning an issue that falls short of lupus.

    There are several excellent lupus hardcovers available in most libraries; you might want to take one or two for a test drive? I think you're already onto a lot of this & should have a useful appointment, having started preparing & lining your thoughts up. You'll probably scare the rheumatologist! Good, the best patients are the best-informed patients, in my book. Keep us posted on how you're faring, OK? Take good care, V.

     
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    Old 12-21-2013, 08:59 PM   #17
    Kaypee
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    Re: Negative ANA, SMITH but positive DsDNA

    My memory isn't perfect, but my sun rash was worst on my legs. It would usually erupt after about half an hour of sun exposure. It was somewhat itchy and small, flat, round spots. I don't think it matches any of the lupus rashes. But my recollection isn't perfect 25 years later.

    The one test my doctor didn't order was Vitamin D. But when I started taking 2000 IU/day I felt so good. I've no idea what my levels were. Being fat soluble, taking too much can accumulate to dangerous levels.

    That's interesting that hormone shifts can aggravate lupus. I suppose that's why so many people are first diagnosed during puberty and pregnancy.

    That is a great suggestion about getting a lupus book. I always like learning more, and websites generally all have the same information.

    Thank you and take care.

     
    Old 12-22-2013, 02:34 AM   #18
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    Re: Negative ANA, SMITH but positive DsDNA

    Hi. If, before your pain started, you were taking any med that's been implicated in DILE, when you see the rheum, if he/she repeats labs, you could ask (before sample is sent to lab) whether anti-ss-DNA and anti-histone are included in the panels. (Those may both be add-on tests that aren't included in the standard AI panels---I'm not sure.)

    I borrowed books, found which I liked, then purchased when I knew for sure.

    My lupus rash, SCLE annular form, started as small, slightly raised red papules, non-itchy (like small mosquito bites, except for the itch). Turned out this was the immature form of SCLE annular. After many episodes of just papules/fade, the papules would reappear; quickly morph (1-2 days) into perfect circles; then expand further, losing circularity; then fade. Then repeat 1-2 months later. Always on photoexposed skin: mostly outer upper arms, some on back, some on upper thighs.

    2,000 IU's of Vitamin D sounds conservative (logical) to me, but I'm only a patient... Anyway, I hope you fare well. On the other hand, and I mean this nicely, I hope you keep posting, at least for awhile. (When you wrote that Vit D is fat soluble, for example, I said to myself, "Aha, that explains it!") Enjoy the holidays!

     
    Old 12-26-2013, 09:05 AM   #19
    Kaypee
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    Re: Negative ANA, SMITH but positive DsDNA

    I had a lot of energy and buzz-bombed for about three days running, then I crashed hard yesterday. I got a good night's sleep and feel much better today. My primary symptoms are fatigue and stamina problems, shortness of breath and arthritis. And as it turns out, I'm just a little young but otherwise fit the late-onset lupus. Flares are less intense, the disease tends to cause more pleursy and multiple organ inflammation, and we tend to have more problems with side effects of medications. [url]http://www.ncbi.nlm.nih.gov/pubmed/22263748[/url]

    Since it will be a while to see a rheumatologist locally I'm looking into travelling to Seattle or getting interim treatment from my MD until I can get into the specialist.

     
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