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Lupus erythematosus, or lupus, is an autoimmune disease that can damage practically any part of the body, including the skin, joints, blood cells, and vital organs (heart, kidneys, brain, liver, and lungs). When a person has lupus, their immune system is overly active and disorganized, functioning as if it’s responding to an injury or infection—even though there isn’t one.
Presentation ranges widely from person to person, but it can include:
- Arthritis, particularly peripheral joints (such as the hands, wrists, elbows, knees, feet, and ankles) manifesting with joint pain, swelling, and stiffness
- Hair loss (in patches or in a more diffuse pattern)
- Inflammation of the heart, brain, kidneys, and eyes
- Skin rashes on the face, the most common being the butterfly rash (named because of its shape)
Symptoms of lupus, which affects about 1.5 million Americans, often occur gradually, but episodes of acute worsening (“flare-ups”) can develop quickly as well. If an individual notices symptoms, they should visit with a rheumatologist to be tested for lupus so they can receive treatment, if necessary.
Let’s examine who’s most at risk for the disease, how we diagnose and treat it, what happens without treatment, and what can be done to lower the risk of symptom flare-ups.
Who's most at risk for lupus?
About nine of 10 adults with lupus are women—most of which we see are in their 20s and 30s. There’s also a genetic predisposition to the disease. We’ll often see lupus patients who have a first-degree relative (such as a parent, sibling, or child) with lupus.
Additionally, lupus affects African-Americans more than other ethnic groups. Although the reasoning isn’t entirely understood, some researchers point to a genetic component, such as African-Americans having a more severe type of lupus. Social disparities could play a role as well, however, such as African-Americans’ access to health care compared to other ethnic groups.
How is lupus diagnosed?
A lupus diagnosis can be made during a doctor’s visit where we conduct:
- Analysis of past symptoms
- Blood and urine tests
- A physical exam
- X-rays of any joints that are affected by arthritis or magnetic resonance imaging (MRI), if necessary
#Lupus is an autoimmune disease that can cause symptoms ranging from face #rashes to #arthritis. To be tested for the disease, people can have blood and urine tests and a physical exam. Learn more. https://bit.ly/2Zvo41O via @MedStarWHC
How is lupus treated?
Medications exist that can decrease inflammation and prevent affected organs from suffering permanent damage as long as the disease is treated early. The most common include:
- Oral tablets
- Injectable medications that patients can self-administer at home
- Intravenous (IV) infusions that are provided by a medical professional
These medications can take anywhere from a few weeks to several months to take full effect. To ensure they are effective, patients have frequent follow-up appointments, during which we monitor whether their symptoms are improving and perform any necessary screenings to evaluate if their condition has improved.
Corticosteroids (aka “cortisone” or “steroids”), meanwhile, are reserved for patients with acute lupus flare-ups. These medications have a more immediate effect that makes them appealing as an acute treatment or rescue therapy; however, an effort is always made to taper them off as quickly as possible in order to avoid complications that result from long-standing steroid use.
It’s important that we provide good support to patients while they wait for their medications to begin working. If patients experience a lot of pain while waiting for their medication to kick in, they might be prescribed painkillers to help. Furthermore, we provide patients with emotional and psychological resources, such as instructions on how to participate in support groups or referrals to psychiatry or psychotherapy, because dealing with a chronic disease can lead to anxiety and depression.
A success story
I always recall the case of a very sick patient, a woman in her 20s who grew up with lupus, having taken medications for most of her life and having suffered multiple flares over the years. Her lupus had been reasonably controlled until she left for college, when her lupus became very active, possibly because of inconsistent use of her medications and increased emotional and physical stress. She presented to the hospital with inflammation in her joints, skin, and brain, which is a severe and relatively rare manifestation, and she couldn’t recognize our medical care team upon arriving at the hospital.
We treated her aggressively with high doses of steroids and escalation of her maintenance lupus medications, and the inflammation improved within 24 hours. Over the following months, we were able to get her disease completely under control with frequent follow up visits and close monitoring. I will never forget her smile and relief for being able to be back at college and enjoying life with her peers again.
What if lupus is left untreated?
Lupus is a multisystem disease, which means it can potentially affect various parts of the body—and cause permanent damage, if left untreated. Although most lupus patients we see typically have arthritis, skin rashes and fatigue/malaise, many of them can also develop inflammation of vital organs, such as the kidneys, heart and brain. In fact, up to 50 percent of patients can develop kidney involvement during their illness, usually within the first few years of disease onset. This can lead to permanent kidney failure and can require lifelong dialysis if not treated early.
While patients can have a hard time knowing whether they have complications such as kidney inflammation (lupus nephritis), we always suggest they stay aware of symptoms, such as swelling of the ankles or face, or urine that is foamy or bloody. Patients should follow up closely with a doctor to identify the cause of these subtle changes.
Can you prevent lupus?
We are not aware of anything that can prevent the development of lupus. However, cigarette smoking, among other environmental exposures, has been reported to increase the risk.
Importantly, there are things that people who already have lupus can do to help prevent their disease from becoming active. For example, patients should use sunscreen with a sun protection factor (SPF) of 30 or higher, as too much sun exposure can be a trigger for lupus symptoms.
Numerous people with lupus visit MedStar Washington Hospital Center, so we have vast experience treating the disease. We use a team approach, working closely with specialties such as nephrologists, neurologists, and cardiologists, which is important because lupus can affect many different parts of the body. As a result, an expert is always involved in a patient’s care—no matter what part of the body is affected.
Lupus is a condition that requires medical attention to manage symptoms. Thankfully, we have a wide range of treatments patients can use to alleviate their pain and get back to their everyday lives.