Issy's Lupus Information Center





Lupus Facts ~ Five











DIAGNOSTIC CRITERIA FOR SLE

1) Malar (butterfly) rash, over nose & cheeks
2) Discoid rash (raised, scaley, disc-shaped patch of skin
appearing after sun exposure)
3) Photosensitivity (development of rash anywhere on the body or any number of systemic complaints after exposure to sunlight)
4) Oral or nasal ulcers (painful or painless)
5) Non-erosive arthritis involving 2 or more peripheral joints (non-deforming); arthralgia (stiff, painful joints without swelling)
6) Pleuritis and/or pericarditis (inflammation in tissue around lungs/heart)
7) Excessive protein in the urine
8) Seizures; cognitive dysfunctions
9) Low white cell or low platelet count
10) LE cells ~~OR~~ anti-native DNA ~~OR~~ anti-Sm antibodies ~~OR~~ a false-positive serum test for syphilis
11) Positive ANA in high titer

*** A patient must have 4 or more of these criteria for a lupus diagnosis to be made.
They may occur simultaneously or over any period of time.***



The above Criteria Listing for SLE was revised in 1982 by the American College of Rheumatism ~ a new revision is now being proposed which will include the Anticoagulant Syndrome and its related laboratory findings.

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COMMON MISCONCEPTIONS

Rheumatology, the branch of Internal Medicine specializing in the treatment of such autoimmune diseases as SLE (and others), is a relative new-comer, having only been established in 1972. Though much knowledge has been acquired and many advancements made since that time, the vast majority of our nation's physicians who have not specialized in Rheumatology or Immunology are not up-to-date on the lastest research findings concerning Systemic Lupus. As a result, most of our health care professionals are ill-informed, creating tragic mis-diagnosis for many lupus sufferers.

Unfortunately, many physicians erroneously believe a lupus patient MUST have the "Butterfly Rash"; that Photosensitivity EXCLUSIVELY produces a skin rash; and most look ONLY for LE cells, anti-native DNA, and anti-SM antibodies ~~ completely ignoring a false-positive syphilis result. Some believe that the anti-DNA antibodies must be present to give a lupus diagnosis, while others will mis-diagnose a patient with lupus because of a positive ANA when none of the other criteria are present. The most commonly over-looked lab test is that for the anti-cardiolipin antibody. Patients with the Lupus Anticoagulant Syndrome commonly show normal or near-normal lab results in all other respects, and usually present with symptoms different from those most widely associated with the SLE. Due to this phenomenon, until an individual is specifically tested for the Anticoagulant Syndrome, a lupus diagnosis often remains elusive. Approximately 30% of all lupus patients have the Anticoagulant Syndrome, and only 30% of those will have serious complications due to these antibodies. While it is possible for an individual to have the Lupus Anticoagulant Syndrome without having SLE, it is very uncommon. It should also be noted that antiphospholipid antibodies are also found in persons with other diseases, yet they haven't ever shown complications in any disease other than Systemic Lupus.


In addition, many physicians are unaware that normal or near-normal lab results CANNOT eliminate a lupus diagnosis in a patient with reports of extensive systemic complaints. Even fewer physicians realize that fluctuating laboratory results in a lupus patient are not necessarily in direct proportion to disease activity. It is possible for a patient with the Anticoagulant Syndrome to suffer a stroke, (or TIA) while Sedimentation Rate, blood compliments, spinal fluid, and anti-DNA may all be normal. Individuals with SLE will, from time to time throughout the course of their disease, have ANA (Anti-Nuclear Antibodies) results ranging from very low titers to high titers, and can even have negative results in the height of illness. However, perfectly healthy individuals, as well as those with some other autoimmune diseases, can have a positive ANA, so this alone cannot establish a lupus diagnosis. Because of inadequate education in SLE, many physicians will not even think to test a patient for lupus -- especially a man or child -- while others are too quick to give a lupus diagnosis without adequate findings. It is believed by some Rheumatologists that many patients who have been diagnosed with Systemic Lupus actually have Fibromyalgia (FM) instead. While FM can be quite functionally-disabling, and it shares many symptoms with SLE, FM does not cause organ damage and it is not life-threatening.

While low platelet and white cell counts are listed among the diagnostic criteria, many physicians are unaware that elevated platelet and white cell counts can be indicative of "Vasculitis" ~~ a secondary condition which is quite common in SLE. In fact, a great majority of lupus symptoms can be traced to this vascular conditon, especially in those patients with the Anticoagulant Syndrome.

Another mis-conception is that lupus patients who suffer Central Nervous System (CNS) involvement will always show the presense of anti-native DNA antibodies. While this antibody certainly leads to a definite Lupus-CNS diagnosis, there remain a great many lupus patients without this antibody who present CNS involvement. It has recently been discovered that cognitive dysfunctions can also be traced to low-levels of oxygen in the blood, especially in those in who experience such vascular disorders as migraine headaches, Raynaud's Phenomenon, and the Anticoagulant Syndrome. This is thought to be a result of restricted blood flow to the brain due to inflammation of blood vessels in most patients, but could also be a result of abnormalities in the Autonomic Nervous System. While 50% of lupus patients have the anti-DNA antibody, (meaning 50% do not) as many as 75% report cognitive impairments.

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Preparing For Your Doctor Visit

Before you jump in the car and head off to another doctor's appointment without being prepared, take time to write down some very important and helpful information. In order for your physician to give you the best treatment possible, you must be willing to participate in your own care. These notes will make the visit flow more smoothly and you won't leave the office wondering what it was you forgot to say. Keep notes!

Here is a list which you can use as a guideline:

  • Name each symptom seperatly, describing it as accurately as possible;
  • When did it start?
  • Does anything seem to trigger it?
  • Is there anything you can do to bring it on, make it better, or make it worse?
  • Is it present everyday, is it constant, or does it come and go? Is it more troublesome at certain times of the day?
  • Rate any pain you are having on a scale from 1 - 10. Don't exaggerate, but also be careful not to minimize. Most lupus patients tend to be guilty of the latter;
  • Is there any combination of symptoms which seem to always come together? If so, be specific;
  • When listing pain, note whether it stays in one place or if it spreads to other parts of the body;
  • Since many of us are so accustomed to hurting "everywhere", it is sometimes difficult to pin-point specifics. However, pay close attention to your body and avoid the temptation of writing down "I hurt all over." While this is probably true, still, note exact points of particular pain;
  • Does the pain, or other symptoms, interfere with your daily activities?
  • Is this symptom remaining the same or is it getting worse? Is it a new symptom or a recurrance of a previous problem?


Each time we go to the doctor, we are always asked the initial question: "What's going on with you?" The next time you're asked that question by your physician, be prepared to give him/her an accurate report!

IMPORTANT NOTE: Keeping such a journal is also crucial in the event of applying for Social Security Disability Benefits. If you are planning to apply for SSD, please read and print the section on Social Security Disability Benefits. It is imparative that you be thoroughly prepared before making your application!



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