Lupus Is a Difficult-to-Diagnose Autoimmune Disease

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The autoimmune disease affects an estimated 1.5 million Americans, but it is manageable.

Chances are you’ve probably heard of lupus, especially if you’re a fan of the Fox medical drama “House M.D.” As the titular character, Hugh Laurie’s catchphrase was, “It’s not lupus—it’s never lupus.”

Why was it never lupus? Well, probably because lupus is famously difficult to diagnose, which is why it’s also known as “the great imitator.”

With its wide variety of changeable symptoms that often present in very different ways for different people, lupus can take an average of up to six years to diagnose.

Find out what lupus is, how to identify it and how it can impact you.

What is lupus?

Lupus is classified as a chronic, autoimmune disease that can damage any part of the body, according to the Centers for Disease Control and Prevention (CDC).

“This means that the immune system that is normally poised to protect the body from pathogens turns and starts to attack its own cells,” said Ken Perry, M.D., an emergency physician in Charleston, South Carolina. “It can cause a wide range of symptoms, such as fatigue and weakness, rash and even kidney and heart problems.”

Symptoms can vary greatly from person to person because lupus can affect any part of the body, making the disease difficult to diagnose.

Additional common symptoms include:

  • Muscle and joint pain
  • Fever
  • Rashes
  • Chest pain
  • Hair loss
  • Light sensitivity
  • Kidney problems
  • Mouth sores
  • Fatigue
  • Anemia
  • Memory problems
  • Blood clots
  • Eye disease

About 1.5 million Americans and 5 million people globally have lupus, according to the Lupus Foundation of America. While anyone can develop lupus, the disease mainly affects people of childbearing age, with 90 percent of lupus cases found in women.

Lupus is also more common in the following groups:

  • African American
  • Hispanic/Latina
  • Asian American
  • Native American
  • Alaska Native
  • Native Hawaiian
  • Other Pacific Islander populations

According to a 2014 study, Black women usually develop the condition at a younger age than white women.

Lupus is currently an untreatable condition, however, it can often be managed with lifestyle changes. Mortality rates for lupus are estimated to be between 10 percent and 15 percent.

The four types of lupus

Lupus manifests as one of four common types: systemic lupus erythematosus, cutaneous lupus, drug-induced lupus and neonatal lupus.

Systemic lupus erythematosus

The most common form of lupus, systemic lupus erythematosus (SLE) occurs in roughly 70 percent of cases. In this type of lupus, the immune system attacks the body and causes problems in certain bodily organs. As the CDC notes, this form of lupus can affect almost any system in the body, including the joints, skin, brain, lungs, kidneys and blood vessels.

SLE is thought to be caused by environmental, genetic and hormonal factors. It isn’t contagious.

“As it is not caused by a virus or bacteria, it is impossible to catch lupus from someone else,” Perry said. “The research is still limited, but there is some evidence that lupus can be caused by hormones such as estrogen. This is one explanation as to the reason that most of the diagnoses of lupus occur in women in their childbearing years.”

Cutaneous lupus

Cutaneous lupus, also known as skin lupus, is similar to SLE but affects only the skin. Symptoms include rashes and skin lesions. This type of lupus is often associated with sun sensitivity.

Drug-induced lupus

Lupus can also be caused by a reaction to a medication. Like SLE, drug-induced lupus can affect almost any organ in the body and can range in severity from person to person. However, this type of lupus is triggered by a bad reaction to a new type of medication. It usually begins three to six months after a patient begins a new course of medicine and stops once the medication is discontinued.

Neonatal lupus

In some cases, unborn infants can pick up SLE auto-antibodies from their mothers while in the womb. This is known as neonatal lupus and accounts for roughly 1 in 50 cases.

How to know if you have lupus

If you suspect you have lupus, your doctor can take you through the steps to arrive at a diagnosis. Unfortunately, there is no lupus test, so diagnosing the condition is often a case of ruling out other potential conditions and illnesses.

As the CDC explained, diagnosing lupus usually involves a process that includes several steps:

  • Discussing symptoms and medical history. Your doctor may ask you to keep a symptom diary.
  • Examining your family medical history. As lupus can be genetic, your doctor may want to know if there is a history of lupus in your family.
  • Undergoing a physical examination. Your doctor may want to observe your symptoms and look for other physical signs of lupus.
  • Taking blood and urine tests. A test known as the antinuclear antibody test is able to detect lupus antibodies in some cases.
  • Undergoing a skin or kidney biopsy. Your doctor may wish to take a small sample to look for signs of lupus antibodies.

Living with lupus

Lupus is a chronic condition but can usually be managed. Your doctor may prescribe lupus medication such as hydroxychloroquine and steroid tablets.

“For most patients, treatment is based on the symptoms that are present,” Perry said. “Most patients have pain and fevers, which can be treated by medications such as ibuprofen and naproxen. As other symptoms develop, patients can be given medications such as hydroxychloroquine and steroids. The treatment will need to be tailored to the symptoms that the patients are exhibiting.”

The disease tends to flare up when it’s triggered, so learning about your triggers can help you avoid flare-ups. Common triggers include:

  • Stress
  • Fatigue
  • Sun exposure
  • Illness
  • Injury
  • Stopping your lupus medicines
  • Other types of medicines

Summing up lupus

Lupus is a chronic autoimmune disease that typically affects women of childbearing age. It can appear in four different forms and lead to a wide array of symptoms, so it’s not always easy to diagnose. Reach out to your doctor if you are concerned you might have lupus.

If you’re one of the many people who puts off health checkups or doesn’t have a regular doctor, taking that first step isn’t always easy. Video visits have become a viable option for most people, and more physicians and therapists have added them as a service. Giddy telehealth makes it easy to get connected to a qualified healthcare professional who can help with a variety of conditions.

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