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    Old 07-17-2015, 04:18 PM   #1
    KRG11
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    Borderline Positive dsDNA

    Hoping to get some feedback/opinions on what a borderline positive dsDNA test might mean in my case. I don't have a diagnosis yet. I am 34 and have suffered for 5+ years from various symtoms. I have widespread joint and muscle pain and stiffness (especially bad neck, back, shoulders), extreme fatigue all of the time, constant rash on my neck and chest and my arms always look sunburnt ( i even have a tan line for the redness on my arms all the time without going in the sun for more than a few minutes at a time) headaches and migraines, dry eyes, and some other random stuff too. I also have hypothyroidism. I tested positive for ANA a few years back (1:320 Homogenous) and negative for all other tests. Then a while later my ANA was actually negative. Now I've started going back to do testing again and my ANA is 1:160 Homogenous and dsDNA is borderline at 33.5. (<30 negative, 30 - 75 borderline positive, 75+ positive). My CBC, ESR, CMP, Vit B12, and CK were all within normal range. Any idea what this means? I don't see my doctor again for another month. :/
    I really appreciate any insights anyone has to offer. Thanks!

     
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    Old 07-19-2015, 06:17 AM   #2
    VeeJ
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    Re: Borderline Positive dsDNA

    Hi & welcome. I'm sorry for your problems. I'm wondering if you could be in somewhat of a gray area. Have you read the "sticky posts" (permanent info posts) located above the user threads? I'm about to cite them... Here goes:
    • While you may have met several of the ACR criteria, you may not have met enough to be a clear-cut case of "classic" systemic lupus. Generally, but not always, people must meet 4 or more to sustain a diagnosis of systemic lupus. In particular, your rheum may or may not count an ANA of 1:320; and also, because your anti-ds-DNA is only just above the lowest reading for borderline, same goes for it.
    • You MAY have fulfilled the arthritis criteria.
    • You MAY have met at least one skin criteria: are you photosensitive?
    • BUT people can have some form of lupus with less than 4 criteria. To wit: if you have ANY form of lupus-specific rash, you do have lupus to some degree. Why? Because lupus can range from cutaneous-only (e.g., only discoid lesions plus maybe some aches and pains and fatigue) to full-blown systemic (circulating autoantibodies with/without major organ involvement). Also, there are some pesky "subsets" which barely peek thru the criteria list. (I'm in such a subset, and boy did I have trouble getting answers.)
    • To complicate matters, the criteria cite only two lupus-specific rashes, discoid and malar, yet there are at least a dozen more! Those others are less common thus aren't included in the criteria. (If everything possible were included, the criteria would run on for pages & pages!)

    Here are a few things you might consider:
    • Make sure you've had all the tests cited in the established criteria, e.g., urinalysis.
    • Make sure you're tested not just for lupus but for all its "close cousins", like Sjogren's syndrome, RA, Mixed Connective Tissue Disease (MCTD), the muscle AI's (Myositis), etc.
    • Try to determine if your rashes & redness resemble any of the lupus-specific rashes. In one of the "stickies", these are named and described. Some hard-to-diagnose patients may benefit from a highly specialized skin test, done by a dermatologist or dermatopathologist, called a Lupus Band Test (LBT). The LBT is tricky (it requires a real expert) and it's typically done only when answers can't be achieved by simpler tests.

    If you'd like to describe what your rashes look & feel like, feel free. For example, if your V-neck area and chest are one big area of almost permanent redness, I'd wonder about "tumid lupus". If instead you get discrete lesions that come & go but don't scar or depigment, I'd wonder about one of the two SCLE rashes. Or if you have discrete lesions that depigment or scar after they fade, I'd wonder whether they're "discoids".

    Also, there are several terrific hardcovers you could find in your library that cover lupus in all its complexity (including those pesky subsets), the close cousins to lupus & how they're differentiated from lupus, etc. Anyhow, I hope this gives you more to consider & that something actually helps! Looking forward to hearing more, with warm wishes, Vee

    P.S. Labs like anti-ds-DNA and ANA are only a snapshot in time, and some of these particularly rise & fall as flares build then recede. So even if your rheum doesn't get answers on this round of tests, you should be re-evaluated down the road if your symptoms persist.

    Last edited by VeeJ; 07-19-2015 at 06:29 AM. Reason: added PS

     
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    Old 07-19-2015, 11:21 AM   #3
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    Re: Borderline Positive dsDNA

    Thank you so much for your reply! Currently I am seeing an Internal Medicine doctor. Do you think it would be worth it to find a rheumatologist?

    I am not sure but I would say I am probably photosensitive. The pictures I find online of Lupus and photosensitive rashes always look a lot more severe than anything I've had. I tried to link a couple pictures of my arm and chest. My rash on my chest isn't as bad today.

    The severity of the redness varies from day to day but they are always there. Even in the middle of winter. It gets worse from being in the sun but doesn't go away even if I haven't been out of the house in weeks (I've had 3 babies in the last 3 years so I've spent a lot of time not leaving the house). All of it feels smooth to the touch. It is a little warm and sometimes a little tingly. I've never had any lesions.

    Thanks again for your post. You gave me a lot of great information. It seems to be a lot harder to find useful info about the other types of lupus. I will definitely talk to my doctor about it at my next appointment.

    Last edited by moderator2; 07-20-2015 at 01:01 PM.

     
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    Old 07-20-2015, 07:42 AM   #4
    KRG11
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    Re: Borderline Positive dsDNA

    Thank you so much for your reply! Currently I am seeing an Internal Medicine doctor. Do you think it would be worth it to find a rheumatologist?
    I am not sure but I would say I am probably photosensitive. The pictures I find online of Lupus and photosensitive rashes always look a lot more severe than anything I've had so I don't know what to think about them. It pretty much just always looks like I've spent a couple hours out in the sun. My arms and chest are always red, just to varying degrees at any given time. It gets worse from being in the sun but doesn't go away even if I haven't been out of the house in weeks (I've had 3 babies in the last 3 years so I've spent a lot of time not leaving the house). They are smooth and pretty much painless and don't itch. Just a little warm and tingly sometimes. I've never had any lesions.
    Thanks for all the great info! I'm supposed to go back in for some more blood tests (RF + Anti-CCP, Histone, C3 + C4, RNP, SSA, SSB) before my next appointment next month. Hopefully I'll get more answers then.

     
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    Old 07-20-2015, 08:56 AM   #5
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    Re: Borderline Positive dsDNA

    Your next set of blood tests will be helpful. The photos of your red arms and chest area are significant and should be shown to your Dr. It is possible a skin biopsy with immunofluorescent studies would be helpful for diagnosis. The rashes of lupus are so varied, and sometimes they are only a "blush" of redness or red splotchy spots like on your chest. The immunofluorescent studies are essential with the biopsy to look for a lupus band of immune complexes deposited in the skin. The chronicity of your symptoms, and list of them are suspicious. A repeat dsDNA may be helpful during your next flare of symtpoms, as well as an anti-Smith antibody. The histone antibody will sort out drug induced lupus if you are on any medications. Good luck. I think you are close to getting a diagnosis and treatment.

     
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    Old 07-20-2015, 10:26 AM   #6
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    Re: Borderline Positive dsDNA

    Thanks! That helps a lot! I tried to post links to pictures a couple times but I was apparently doing something wrong so I gave up. I did show the rashes to my doctor at my last appointment but she didn't seem to know what they could be. I am starting to think I should try going to a rheumatologist at this point or maybe a dermatologist even. I think I'll see what my next blood tests show and then maybe discuss it at my next appointment.

     
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    Old 07-20-2015, 11:47 AM   #7
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    Re: Borderline Positive dsDNA

    I think a rheum and derm consult would be great. You need those to put all of this together. I would save the biopsy for last if you can't get a diagnosis from the rheum based on symptoms and blood tests.

     
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