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Lupus - Positive ANA & Anti dsDNA

Expert: Cynthia Donlan - 11/7/2009

Question
QUESTION: Hello Cynthia- I have had a fever of an unknown origin for 6 months now. It usually ranges from 99-100.3. It presents itself everyday. I have been through the ringer with doctors. I am totally fatigued, have wrist pain and abdominal pain. My CBC is normal, sedrate is normal, c3 %26 c4 compliments are within normal range and c reactive protein is normal. However, I tested positive for ANA twice and I also test positive for the Anti DsDNA antibodies. I went to see the Rheumy and he has pretty much dismissed me because I don't meet all 4 criteria of Lupus. He didn't even reschedule me for a follow up visit. I am so frustrated with these doctors and just don't know what to do. Can you have a normal CBC and still have Lupus that has not progressed yet?

ANSWER: Dear JAckie:

Hello! Thanks for writing.

It seems like you are going through alot right now. it is time you fire your rheumatologist and get a new one if you are not satisfied dont be scared.

let me begin by letting you know there is 11 symptoms that the American College of Rheumatology developed as being the hallmark symptoms of a person who has lupus. if you have 4 out of elevan of these symptoms over the course of a life time. (You dont need to have them now), It is like you have lupus.

1. Rash over the cheeks.
2. Discoid rash (red raised patches).
3. Photosensitivity this is when you go out in the sun and you get red and not sunburned or you develop hives or flu like feeling.
4. Ulcers in the nose or mouth (usually painless).
5. Arthritis and or Muscle Pain and inflammation
6. Pleuritis or pericarditis (inflammation of the lining of the heart or lung).
7. Kidney disorder Protein, Casts and or Blood in urine. You can tell if you have potentially protein in urine by looking at the bowl afterwards. Is it frothy and foamy like the head on a mug of root beer?
8. Neurologic disorder (seizures/convulsions and/or psychosis).> Mood swings, depression, panic attacks, paranoia, Forgetfulness, balance and gait issues.
9. Hematologic disorder. A Low White cells, Platelets and or Low Red Cells.
10. Antinuclear antibody (ANA).
11. Immunologic disorder (positive double stranded Anti-DNA test, positive Anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis
test (VDRL).
There are no 100 % definitive tests for Lupus. Lupus is a designer disease. It affects each patient differently and each person’s blood variables and test results are different. There are some tests that point more towards a Lupus diagnosis then others.

Now let’s get further along in the discussion. The next thing I would like to discuss with you is the ANA or Anti Nuclear antibody test.

In autoimmune diseases, the body makes antibodies that work against its own cells or tissues. Rheumatic diseases (diseases that affect connective tissue, including the joints, bone, and muscle) are also associated with these antibodies.

Autoimmune and rheumatic diseases can be difficult to diagnose. People with the same disease can have very different symptoms. A helpful strategy in the diagnosis of these diseases is to find and identify an autoantibody in the person's blood.

The antinuclear antibody test looks for a group of auto antibodies that attack substances found in the center (nucleus) of all cells. It is useful as a screen for many auto antibodies associated with diseases that affect the entire body (systemic diseases).

This test is particularly useful when diagnosing a person with symptoms of SLE, an illness that affects many body organs and tissues. If the test is negative, it is unlikely that the person has SLE; if the test is positive; more tests are done to confirm whether the person has SLE or another related disease. Other diseases, such as Scleroderma, Sjögren's syndrome, Raynaud's disease, rheumatoid arthritis, and autoimmune hepatitis, often have a positive test for antinuclear antibodies.

It may also be ordered when a patient has been diagnosed with an autoimmune disorder and the doctor suspects that the patient may have developed an additional autoimmune disorder. Patients with autoimmune disorders can have a wide variety of symptoms such as low-grade fever, joint pain, fatigue, and/or unexplained rashes that may change over time.

ANA results are described with a Titer and pattern. Low-level titers are considered negative, while increased titers, such as 1:320, are positive and indicate an elevated concentration of antinuclear antibodies.

Low level titers can be seen in relatives of people with lupus and other autoimmune diseases and healthy senior citizens at times can for no explained reason have a positive ANA.

The ANA test result also looks for different types of patterns seen in the cells. The most common forms of patterns seen are:

•   Homogenous (diffuse) - associated with SLE and mixed connective tissue disease
•   Speckled - associated with SLE, Sjogren’s syndrome, Scleroderma, polymyositis, rheumatoid arthritis, and mixed connective tissue disease
•   Nucleolar - associated with Scleroderma and polymyositis
•   Outline pattern (peripheral) -associated with SLE
An example of a positive result might be: “Positive at 1:320 dilution with a homogenous pattern.”
A positive ANA test result may suggest an autoimmune disease, but further specific testing is required to assist in making a final diagnosis. ANA test results can be positive in people without any known autoimmune disease. While this is not common, the frequency of a false positive ANA result increases as people get older.
Also, ANA may become positive before signs and symptoms of an autoimmune disease develop, so it may take time to tell the meaning of a positive ANA in a person who does not have symptoms.
About 95% of SLE patients have a positive ANA test result. There are a rare group of people however who DON’T get a positive ANA. These folks got a form of lupus called ANA negative lupus. If a doctor suspects this they run a sleuth of blood work, particular the SSA Antibody test which if a patient also has symptoms of SLE, such as arthritis, a rash, and autoimmune thrombocytopenia ( low platelets), then he probably has SLE
Two subset tests for specific types of auto antibodies, such as anti-DsDNA and anti-SM, may be ordered to help confirm that the condition is SLE.

Anti-double stranded (DsDNA) was first described in the 1950s.

DsDNA antibodies are of considerable diagnostic value and are thought to be involved in the pathogenesis of systemic lupus erythematosus (SLE). Fluctuations in anti-DsDNA antibody levels are also used as markers for disease activity and exacerbations.

While antibodies to single stranded (ss) DNA are seen in many rheumatic and non-rheumatic conditions, antibodies to ds DNA are considered diagnostic for SLE.

Anti ds DNA antibodies are considered responsible for much of the kidney disease and renal manifestations that can occur in SLE. A strong correlation exists between renal disease activity and anti-ds DNA antibody titers and the development of lupus nephritis.

Although DsDNA has a reputation for being highly specific for Systemic Lupus Anti-DsDNA have also been found at low frequency (generally less than 5 percent), in patients with rheumatoid arthritis, Sjögren's syndrome, Scleroderma, Raynaud’s phenomenon, mixed connective tissue disease, discoid lupus, myositis, uveitis, juvenile arthritis, antiphospholipid syndrome, Grave's disease, Alzheimer disease, and in autoimmune hepatitis.

Another fascinating tidbit of information is that an increased frequency of these antibodies have also been noted in some otherwise normal individuals, particularly first degree relatives of patients with lupus and some laboratory workers.

However when you put a positive ANA and A Positive Double stranded DNA it leans towards a diagnosis of some form of Lupus because as I indicated above it is highly diagnostic of that.

Now Iam not a doctor, I wish I were so you need a pro to confirm that. is your rheumatologist attavhed to a big teaching hospital? Like Hopkins? Harvard? Mayo? U of P? Mount Sinai? Duke?, etc.?

If not you should consider that. Hang in you are sick!

They call us lazy, crazy, overeacting, manipulative, a freeloader and attention seeking.

People have a hard time grasping our conditions because we “LOOK SO GOOD” on the outside but our falling apart on the inside. They are typically “Invisible Disabilities’ that people cant see and sometimes don’t believe are there.

Lupus is a very hard disease to diagnose it took almost a decade for my docs to finally figure out what was going on. Partially because it needed time to brew and rear it is ugly head. In the beginning my ANAs did not come back positive then they did, along with other antibodies and abnormal test results.

Unfortunately with these diseases because of the unpredictability of them, timing is the key to a good diagnosis. You got to get to the lab at the right time and on the right day for the conditions to be right in position for a diagnosis.

One thing I have done is when I get a prescription for lab work from a doctor I put them in a folder or shoe box and hold on to them until I feel really bad, then I go to the lab and get them run.. This way I have a better chance to see what is going on.

It is my dream that this helped.   If you need more info write again and please let me know how you are

God Bless,

Cynthia

---------- FOLLOW-UP ----------

QUESTION: Cynthia- Thank you so much. You have given much insight and piece of mind. I am going to certainly fight until I finally get the diagnosis I deserve. My Rheumy made it sound as though just because my CBC is within normal limits, I am fine. I know I am not fine and the abnormal tests have proven so. I just looked in my mouth under my tongue and noticed some sores that are painless and there are a few of them. I can't believe the rheumy didn't notice. I am firing them and starting a new. But the question that still remains is can Lupus patients have a normal CBC? Is that possible in the beginning or the manifestation of this disease? I look forward to hearing from you..:)

Answer

Dear Jackie:

YES! Yes! Yes! Autoimmune diseases are Head gamers. Antibodies come and go. Blood work goes up and down. You can be fine for days, months, weeks and even years and then POW! It is back again.

You need to find a new rheumatologist. You do not even have to have an abnormal CBC to get diagnosed with lupus. Just 4 out of the 11 symptoms I mentioned and they don’t have to happen all at the same time. Just over the course of a lifetime.

If you don’t think you feel good, then you don’t feel good. PLAIN AND SIMPLE. Be an advocate for yourself. Don’t back down and let them know you are not well and that you need help.

Hang in there I have been there!

Let me give you some advice though. When you get a script from a doctor. A lab (blood work, Urinalysis) or imaging test script (x-rays, cat scans, MRIs, Ultrasounds), hold off on getting them run until you have an exceptionally bad day. A script is good for one year of the date.

This way whatever is wrong will show! Don’t give up there is hope!

Please Take Care

Cynthia

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