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  1. #1
    Join Date
    Sep 2003
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    Default New Blood Results have me scared and worried

    Hi all I am new here and am a 32 yr old female from Canberra, Australia, with a shocking medical and family medical history.
    I have a VERY Strong family history of SLE (lupus) and other autoimmune disorders including Sjogen's Syndrome, Cryoglobulanaemic Vasculitis and MORE. Raynauds runs in my family (and I have this and have since I was 12), I was diagnosed with JRA when I was 12 and also with Seronegative spondoloarthritis at about 15 or so. I am 32 now and as well as having these problems and this history I also have Ehlers Danlos SYndrome (Hypermobility Form), and RSD/CRPS1 (Reflex Sympathetic Dystrophy), so there are a LOT of reasons for my symptoms to be OTHER things apart form Lupus etc.
    I watched my grandfather died of Lupus complications of the heart and my Mum die of complications of Sjogrens (she had Sjogren's Lymphoma) last year on Mothers Day.
    So this is my problem I just had a VERY high ANA result this week. My ANA has gone from 80 in 1999 to 1280 now <eek> :shock: .
    My GP is WORSE than useless and even after me telling him my history and worries he just told me to see a rheumy and then gave me 3 names and told me to ring them. The earliest I can get in is February and I think this is TOO long to wait (my GP is going to TRY to get me in earlier, but I wont hold my breath).
    IS there anything I should be doing in the mean time???
    any tests to rule out SLE etc or to confirm it??,
    any Medications to slow down this "spike" in my ANA ??
    any medications to start incase it is SLE???
    and so on.
    Thanking you all in advance for reading this and for NAY help you can offer me in this quest.

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Shazinoz: In order to make a positive diagnosis for SLE, you doctor must gather information form a variety of sources; your past history, lab tests and your current symptoms. Doctors use a list of eleven criteria to help make a diagnosis of SLE. You must satisfy at least four of those eleven criteria. They are as follows: Malar Rash - Discoid Rash - Photosensitivity - Oral Ulcers - Arthritis - Serositis - Renal Disorder (excessive protein in the urine) - Neurologic Disorder (seizures, convulsions) - Hematologic Disorder ( hemolytic anemia or leukopenia) - Positive ANA - Immunoligic Disorder (positive anti-double stranded anti-DNA test, positive anti-SM test, positive antiphospholipid antibody or false positive syphillis test).
    Certain medications can also cause a positive ANA. So, you can have a positive ANA and not have is only an indicator and not a diagnostic and can be found positive in a number of illnesses and conditions! Positive ANA only satisfies one of the 11 criteria for a SLE diagnosis.

    The most common treatment for elevated ANA is low doses of steroids, such as prednisone or dexamethasone. When you see your doctor, discuss a trial of lupus medications, in the meantime while waiting for a diagnosis. The medication therapy includes:
    NSAIDs'(Ibuprofen, naproxen), Antimalarials (plaquenil), Corticosteroids(prednisone), Immunosuppressive drugs (methotrexate, Imuran).
    I hope that I have been helpful. If you need more information, please feel free to ask. I am happy to research and answer any questions that you may have!
    Peace and Blessings

  3. #3
    Join Date
    Dec 2006
    Western Pennsylvania
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    I have RSD, too! I also have the hypermobillity thing. Is this something a lot of people with Lupus have?

    I'm having a lot of symptoms that don't look like RSD, so I'm getting checked for Lupus. I have all of the Lupus symptoms, too. bleh... RSD itself is so hard to live with. I'm pretty sure that I have another autoimmune disease (whether or not it's lupus) because of my symptoms, I'm hoping I can get some tests done soon.

    A lot of times RSD patients are treated like we are faking or whatever, because there are no tests to determine the disease, only clinical diagnosis.
    I'm really hoping I can get all of this other stuff figured out soon.
    As crazy as it sounds, it would be a blessing to get diagnosed with something more treatable and get taken seriously.

  4. #4
    Join Date
    Aug 2006
    Thanked 3 Times in 3 Posts

    Default Hi, Sharon

    Many people who have relatives with lupus will also have positive ANA test results even though they personally don't have any autoimmune diseases. So a positive ANA in the absence of other symptoms suggesting lupus may not mean anything - there are many things which can cause a positive ANA, and the majority of people who have a positive ANA do not have lupus. People's ANA levels naturally increase as they grow older, and many medications can also increase your ANA - so can a viral or bacterial illness or infection. So doctors never base a diagnosis of lupus on ANA alone, and there is really no protocol for treating an elevated ANA unless an autoimmune illness has been diagnosed. The fact that you have both JRA and Reynaud's could account for your ANA increasing as you get older - an increase in ANA doesn't necessarily reflect an increase in the severity of the disease.

    You have to remember that ANA numbers can be confusing because they are based on the number of times the test sample is diluted until ANA is no longer detectable. Because the amount of fluid used to dilute the sample doubles each time, the test numbers double too, so they go 80, 160, 320. 640, 1280. 2560, 5120, 10240, etc. up to the lab's cut-off point for testing. So an increase from 80 to 1280 sounds huge, but is actually a difference of 4 dilutions. And different labs may use different "sera" and different methods for the test, so they might get higher or lower results. So an ANA test by itself is not a very specific test for lupus - because there are so many variables that affect it. I know you are worried about the possibility of lupus with your family history, and I hope you will be able to get into a rheumatologist soon. It's hard not to stress out, but try to remember that the ANA is only a small part of the picture when it comes to lupus.

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