Understanding Lupus

We still have a lot to learn about how lupus develops and what we can do to stop it. We do know it’s an autoimmune disease that’s more common in women but less common in Caucasians. There are four different types: systemic lupus erythematosus (SLE), cutaneous lupus erythematosus, neonatal lupus and drug-induced lupus. SLE can cause a host of vague and nonspecific symptoms that may include muscle or joint pain, fatigue, hair loss and organ involvement. SLE can be fatal if it attacks the kidneys or heart. There’s no blood test that definitively determines if someone has SLE, so diagnosis is often difficult and takes an average of 6 years. Treatment usually consists of hydroxychloroquine to reduce symptoms and corticosteroids to slow organ involvement, but advances in research could make patients’ options more individualized. Let's look deeper at this challenging disease.

What Is Lupus?

Lupus is an autoimmune disease, which means it triggers the immune system. No one is really sure what causes it to strike, but it occurs 10 times more often in women than in men. The risk is even higher for women of African, Hispanic, Asian and Native American descent, and it’s higher yet in people who have at least one relative with lupus or another autoimmune disease.

Other issues that may affect the risk of developing lupus include hormones (estrogen could be a trigger) and environmental factors like stress, infection, physical trauma, certain antibiotics and exposure to ultraviolet light.

There are four different types of lupus:

• Systemic lupus erythematosus (SLE) is the most common form, causing a wide variety of issues. It can be deadly if it affects the kidneys or heart.
• Cutaneous lupus erythematosus causes disk-like rashes and other skin lesions. About 10% of people with this condition have, or will eventually develop, SLE.
• Drug-induced lupus erythematosus is caused by certain prescription drugs (Hydralazine, Isoniazid and Procainamide).
• Neonatal lupus occurs when a baby is born with their mother’s lupus antibodies. This condition is rare and usually resolves after several months.

When a person is referring to “lupus,” they’re usually referring to SLE.

Lupus Symptoms

Symptoms of SLE vary between patients, making every case unique. Some of the most common issues with SLE include:

• Joint pain and/or swelling
• Muscle pain
• “Butterfly” rash and other lesions
• Discoloration in the fingers and/or toes
• Sun sensitivity
• Swollen lymph nodes
• Fatigue
• Hair loss
• Mouth ulcers
• Fatigue
• Lung, kidney and/or heart involvement
• Neurological problems

These symptoms may not always be present, and they might not all show at once. When a person with SLE is symptomatic, they are suffering a “flare”; between flares, the patient is in “remission.” Disease severity can vary greatly between individuals. About 10% to 15% of people with SLE will die of complications.

Floating in Diagnostic Limbo

Part of what makes SLE so frustrating is how difficult it can be to pinpoint. It takes an average of 6 years from symptom onset for a person to obtain a diagnosis, and 63% of patients report being misdiagnosed beforehand. Over half switch doctors multiple times in the process. Part of this is because of how broad and nonspecific many SLE symptoms are; for some patients, the diagnostic limbo this leaves them in can be just as distressing as the illness itself.

There’s no one blood test for lupus, so doctors will look at a variety of factors when making a diagnosis. About 97% of people with SLE have antinuclear antibodies (ANAs), antibodies programmed to destroy the nuclei of human cells. Numerous other issues can cause a positive ANA test, so doctors must look for additional signs of activity in the blood and urine before they can definitively diagnose SLE. Skin and kidney biopsies can sometimes be helpful in determining a diagnosis.

The Future in Lupus Treatment

Traditionally, SLE treatment has included medications like hydroxychloroquine, which can reduce the severity of many lupus symptoms, and corticosteroids, which control inflammation and can sometimes slow the progression of organ involvement. These medications can come with some serious side effects, which can vary widely from patient to patient.

According to a recent US News report, researchers have discovered different “genetic signatures” that may drive the direction an individual’s SLE takes. This can help with diagnosing kidney involvement. It may also help doctors individualize treatment by pinpointing who is more likely to respond to immunosuppressive drugs.

There’s still a lot to uncover about diagnosing and managing SLE, but new research could help doctors make more effective use of available options. More individualized treatments could improve the lives of the roughly 5 million people currently struggling with this illness worldwide. Doctors may never fully solve the puzzle, but they might just piece together enough of it to make a difference.

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