Results 1 to 10 of 10

Thread: Hi...new here and have questions

  1. #1
    Join Date
    Sep 2009
    Location
    Southern California
    Posts
    15
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Hi...new here and have questions

    By way of introduction and to provide background (although I did post some of this in another thread):

    I don't have a diagnosis of lupus yet.....just Hashimoto's thyroiditis, asthma, psoriasis, autoimmune hepatitis, celiac disease, Sjogren's Syndrome, Raynaud's syndrome, rheumatoid arthritis, and fibromyalgia.

    I'm in a wheelchair but can walk or stand for short periods (few minutes). I'm still working full-time plus a part-time job.

    OK...my questions:

    I just had a blood test positive for ANAChoice screen and anti-double-stranded DNA antibodies (but my complement C3 was high), plus I've been getting the malar rash and photosensitivity rash too. I've also had urinary problems lately (incontinence, blood in urine, frequent infections).

    Two of my aunts died from complications of lupus. One of my adult daughters has lupus too.

    When I asked my rheumatologist if the high level of anti-DS DNA antibodies meant that I had lupus he said no. But I haven't yet told him about the rashes etc.....I just lately realized that I've been having them. I know that sounds weird but I have the kind of fair Irish skin that always turns red at inappropriate times anyway so I just didn't notice the butterfly rash right away.

    Does the high C3 negate the high level of DS DNA antibodies? I know that it means my kidneys are not currently being damaged, but do I have to have a low level of C3 in order to be diagnosed with lupus?

    Thanks for your help....
    JoAnn

  2. #2
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Hi JoAnn,

    I have done a bit of reading on this subject, and from what I have read, I get the impression that a high C3 does not necessarily negate a high level of double strand DNA antibodies. However, I am not completely sure that I am correct. Much of what I have read has been ambiguous, and I am a layman, so I could be reaching the wrong conclusion.

    There is an article on the Lupus Foundation Website that covers the lab test result issues in a fairly basic non-detailed format. The link is-

    http://www.lupus.org/webmodules/weba...nt-article.htm

    There are other, far more detailed reports available that require a subscription to access. The New England Journal of Medicine has one that is supposed to be fairly detailed. I've been meaning to subscribe and dig into it, but lately brain fog has been bad, so I've not been able to read much.

    Our Admin, Saysusie, is very well versed on this subject, and I will bring your question and post to her attention so she can chime in with her opinion.

    Rob
    Last edited by rob; 09-20-2009 at 10:36 AM.

  3. #3
    Join Date
    Sep 2009
    Location
    Southern California
    Posts
    15
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Rob,

    Thanks for your reply and for the link....it is informative.

    I appreciate your help!
    JoAnn

  4. #4
    Join Date
    Oct 2008
    Location
    California
    Posts
    1,213
    Thanks
    280
    Thanked 208 Times in 162 Posts

    Default

    Welcome, nasalady! You "just" have a lot going on.....even without the SLE diagnosis!

    I am so glad that Rob gave you some insight. I'm absolutely amazed at his ability to recall data/facts. I really don't know how he does it. I'm sorry that I can't offer you any advice as I've only been diagnosed since 12/08 and brain fog has set in


    Stop by frequently (especially if you have a hard time remembering), you'll always learn something new!

  5. #5
    Join Date
    Sep 2009
    Location
    Southern California
    Posts
    15
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks BonusMom....I'm very familiar with brain fog, unfortunately!

    I do plan to check out the resources here; it seems to be a very helpful forum!

  6. #6
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 80 Times in 69 Posts

    Default

    hi nasalady,welcome to our family....i know you will find that everyone here is knowledgeable, and compassionate....this is an incredible group....NO, the c3 does not have to be in the abnormal range for a lupus diagnosis....my ana is positive at 1:1280 homogeneous....my c3 has always been normal....as you said, the elevated c3 indicates kidney involvement.....i have had blood in my urine for over 13 years, and still my numbers remain in the normal range. thanks for joining us...i look forward to sharing stories....i have a friend (we have been friends for over 30 years), and he is a safety director with NASA at Stenis in Gulf Port, MS. He is over the construction and safety of the external tanks.
    Phyllis

    share a smile today

  7. #7
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,765
    Blog Entries
    10
    Thanks
    1,624
    Thanked 934 Times in 593 Posts

    Default

    Hi Nasalady:
    A positive ANA does not necessarily mean that you have Lupus. There are several other diseases that also have a positive ANA. However, most persons with active Lupus do have a positive ANA. There are 11 criteria used to determine if Lupus is present, a person must meet at least four (4) of those eleven criteria. The "Lupus Foundation" website has a new interactive link "Could I Have Lupus" which is really helpful to those who feel that their symptoms may be due to Lupus. It is informative and easy to understand.
    www.lupus.org

    With reference to your questions: "Does the high C3 negate the high level of DS DNA antibodies? & "do I have to have a low level of C3 in order to be diagnosed with lupus?"

    First, let me give you a bit of explanation so that you'll understand the tests. The complement system is one of the natural defense mechanisms that protects our bodies from infections and perhaps tumors. Measurement of complement components aids in the diagnosis of immunologic disorders, especially those associated with deficiencies of complement components (such as multisystem rheumatic diseases, such as systemic lupus).

    Decreased levels of C3 are associated with autoimmune disease, neonatal respiratory distress syndrome, bacteremia, tissue injury and chronic hepatitis. Decreased levels of C4 may indicate disseminated intravascular coagulation (DIC); acute glomerular nephritis, chronic hepatitis and SLE.
    Increased levels of both C3 and C4, in addition to increased concentrations of C-Reactive Protein, are linked to acute inflammatory disease and tissue inflammation (As happens in Lupus).
    So doctors are looking for indications of inflammation (increased C3 & C4) &/or indications of auto-immunity and/or kidney involvement (decreased C3 & C4).
    If Lupus nephritis (kidney involvement) is indicated in the C3 & C4 compliments, the DS DNA test ( along with antinuclear antibodies and levels of Ig & IgM ratio) help to support the diagnosis of Lupus nephritis and helps to determine the extent of damage caused by the nephritis. The IgG/IgM ratio of anti-dsDNA antibodies represents a significant parameter used by doctors, to distinguish patients with lupus nephritis from those without renal involvement. So, one test does not negate the other. Evaluation of anti-dsDNAisotypes is simply a diagnostic tool to define subsets within Lupus (SLE) patients who have different clinical manifestations. In particular, the IgG/IgM ratio of anti-dsDNA antibodies are used as a diagnositc marker for lupus nephritis during the course of the disease.
    All of the tests are used as aids in determining if a condition exists and the extent of that condition.
    Also, please know that, for diagnosis, Anti-dsDNA antibodies are frequently detected in active SLE, but they are not specific for SLE as they are also present in up to 30% of other disease groups. Therefore, doctors will use the aggregate results of all tests, personal history, and presenting symptoms to make a diagnosis. All tests are merely parts of a combination of things used to make a determination.

    I hope that this has been helpful to you. Please let me know if it confused you further and/or if you need further information!

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

  8. #8
    Join Date
    Sep 2009
    Location
    Southern California
    Posts
    15
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Thanks so much for the information, Phyllis and Saysusie! I certainly am beginning to understand why it's so difficult to diagnose lupus!

    JoAnn

  9. #9
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 80 Times in 69 Posts

    Default

    saysusie,thanks again for explaining the relationship with ANA and C3 and C4....maybe you should transfer your post to the stickies....so many people ask about this relationship.you explain things so clearly, i hope you understand your value to this forum.
    Phyllis

    share a smile today

  10. #10
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,765
    Blog Entries
    10
    Thanks
    1,624
    Thanked 934 Times in 593 Posts

    Default

    Mountaindreamer;
    That is a good idea. I will do that now, I will place it in "Newly Diagnosed". Also, Thank you very, very much for your compliment!

    Nasalady;
    You are most welcome. We are here to help you as much as we can.

    Peace and Blessings
    Namaste
    Saysusie
    Last edited by Saysusie; 09-23-2009 at 11:03 AM.
    Look For The Good and Praise It!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •