What is Lupus?

In simple terms, lupus erythematosus (SLE), develops when the body becomes allergic to itself.  Immunologically speaking, it is the opposite of what takes place in cancer or AIDS.  In lupus, the body overreacts to an unknown stimulus and makes too many antibodies, or proteins directed against body tissue.  Thus, lupus is called an autoimmune disease.

Lupus can be a difficult disease to diagnose.  Many lupus patients look perfectly healthy, but surveys have shown that newly diagnosed patients have had symptoms or signs for an average of three years.  Increasing public awareness of the disease could lead to earlier diagnosis.

 “Rheumatology is one of the recognized subspecialties of internal medicine and the rheumatologist is the specialist who is capable of diagnosing and treating SLE”.

ACR (1997) Revised Criteria for the Classification of Systemic Lupus Erythematosus (SLE)

A person is said to have SLE if 4 of the following 11 criteria are present at any time.

Skin criteria:

  1. Butterfly rash (lupus rash over the cheeks and nose)
  2. Discoid rash (a thick, disk like rash that scars, usually on sun-exposed areas)
  3. Sun sensitivity (rash after being exposed to ultraviolet A and B light)
  4. Oral ulcerations (recurrent sores in the mouth and nose)

Systemic criteria:

  • Arthritis (inflammation of two peripheral joints with tenderness, swelling, or fluid)
  • Serositis (inflammation of the lining of the pleura (lung) or the pericardium (heart))
  • Kidney disorder (protein in urine samples or abnormal sediment in urine seen under the microscope)
  • Neurologic disorder (seizures or psychosis with no other explanation)

Laboratory criteria:

  • Blood abnormalities (hemolytic anemia, low white blood cell counts, low platelet counts)
  • Immunologic disorder (blood testing indicating either antiphospholipid antibodies, lupus anticoagulant, anti-DNA, false-positive syphilis test, or a positive anti-Smith antibody (anti-Sm)
  • Positive ANA blood test.

                                                            (Source: The Lupus Book, (2009) Daniel J. Wallace, M.D.)

I was diagnosed in 2009, with Central Nervous System (CNS) lupus, with a wide range of affections affecting my brain, lung, G.I and vasculitis to name a few.  I tested positive for nine of the eleven criteria from the ACR table and survived two near death episodes in the hospital ICU.

The following self-pictures of me show some of the symptoms that people can see, but they are the tip of the iceberg hiding the damage its causing underneath. 

I receive an IV injection of Benlysta (Belimumab) an immunosuppressive therapy every twenty-eight days taken with Plaquenil (Hydroxychloroquine) and Prednisone as a standard therapy, besides other drugs as needed to treat lupus.

No matter what claims and stories you hear, there is no cure for lupus-period. While the drugs save your life and gives you some quality of life, they have serious side effects that damages your health, and fails to treat all symptoms of lupus.

Symptoms:

Lupus is difficult to diagnose, and no two persons can have the same manifestations. Some of the symptoms are hair loss, mouth ulcers, rashes, swollen joints, pain and stiffness in the joints, chest pain, fever, swollen glands, low blood cell count, protein in the urine and fatigue.

The more severe manifestations of SLE are:

  1. Cognitive dysfunction.  Lupus effects the brain by causing seizures and inflammation of the lining of the brain.  By inflaming the brain, it can affect the spinal cord and cause Myelitis and paralyze the patient. It can affect the peripheral nerves and cause foot, or wrist drop.
  2. Lungs. Bleeding in the lungs, causes inflammation of the lining of the lungs, called pruritis.
  3. Heart. Inflammation of the lining of the heart or the heart itself and the valves.
  4. Intestinal involvement effects the peritoneum, the lining of the stomach.
  5. Vasculitis, inflammation of the blood vessels.
  6. Inflammatory rashes or ulceration of the skin.
  7. Thrombosis, blood clots.
  8. Antiphospholipid Syndrome. An autoimmune disorder which affects the normal proteins in the blood.
  9. Kidneys. When the lupus affects the kidneys, it’s called lupus Nephritis.  Proliferative Nephritis, the most severe kind cause kidney damage.

How important is it to stay healthy for a lupus warrior?

It is especially important to stay healthy by exercising, avoiding weight gain, eating healthy and keeping the blood pressure and cholesterol under control.  After 10 – 20 years of having lupus, the main problem that lupus warriors face is the cardiovascular risk that is highly elevated.  Addressing the cardiovascular risk is extremely important. “Deaths from lupus generally occur early on from active disease or later from continuously active inflammation or complications of therapy.”  Daniel J. Wallace. M.D.

As a lupus survivor, what extra challenges do you face when you swim or exercise?

If folks can get out of bed, exercise is better than no exercise, but sometimes with lupus, you need to pace yourself and take days off from exercise since the body is under constant attack.

Exercise is a big challenge for me.  My lungs use oxygen inefficiently in comparison to the normal healthy folks I swim with.  For example, while others use around 2 tanks of oxygen during a workout, I need around six per my pulmonologist.  My muscles fatigue faster than the average healthy person.

During swim workouts, I must stop at the wall for a considerable time to catch my breath.  I am thankful that my swim coaches understand my condition.  Running out of breath and muscles fatiguing applies to all forms of exercise.  The reward for exercise is greater for it continues to give me some quality of life.  I urge all my fellow lupus warriors not to give up and stay healthy.

  How does photosensitivity affect lupus?

Photosensitivity, also known as sensitivity to sunlight, is a common symptom of lupus, as 40 to 70 percent of people find that ultraviolet (UV) rays worsen their symptoms and cause flare-ups. Photosensitivity can affect people with both cutaneous and systemic lupus, causing symptoms such as rashes, fever, fatigue and joint pain.