Lifelong disease is versatile, unpredictable
Lupus is one of the most mysterious and devastating diseases known to humankind.
What is Lupus?
Systemic Lupus Erythematosus (SLE), also known as Lupus, is a chronic inflammatory disease that can affect any part of the body. Lupus is an autoimmune condition, meaning that your body’s immune system attacks your own tissues, thinking that they are foreign. This can result in inflammation which can damage the organs involved and also cause skin rash with sun exposure, commonly the butterfly rash (Malar rash) on the face or Discoid rash on any part of the body.
Who is at risk for Lupus?
Lupus most commonly affects people between ages of 15-45 years old, particularly during childbearing age, and is a lifelong disease. Approximately 1.5 million people in America are diagnosed with Lupus. Ninety percent of patients are women, and 15 percent are children. Lupus predominantly affects African-Americans, Hispanics and Asians two to three times more than Caucasians. The causes of Lupus are unknown. Scientists believe that hormones, genetic, environmental factors and ultraviolet (UV) radiation damage may play a role.
What are the symptoms of Lupus?
No two cases of Lupus are alike. Common symptoms include overwhelming fatigue, unexplained fever, debilitating joint pain, disfiguring skin rash that lasts for weeks or months. Lupus can affect the skin and cause light sensitivity, scarring rash on the body, butterfly rash on face, mouth and nose ulcers along with hair loss. Joint pain, swelling and stiffness are commonly seen with Lupus. It can even affect internal organs like the kidneys, resulting in kidney failure, and the lungs, heart, brain and nervous system. Lupus can cause severe depression, headache, seizures, stroke and heart attack. Anemia, low white count or low platelet count are commonly encountered blood abnormalities with Lupus. Pregnancy in patients with active Lupus can result in recurrent miscarriages, premature labor and even maternal deaths.
Why is diagnosing Lupus challenging?
Patients more commonly have these symptoms because of other diseases like infections and cancer. Hence, it is very important to rule out other causes of these vague, non-specific symptoms before diagnosing the patient with a disease like Lupus and treating them with medications that will suppress their immune system. The antinuclear antibody (ANA) blood test, which is positive in most patients with Lupus, can also be positive in 10 percent of the general population. So, just having a positive blood test doesn’t necessarily mean that they have Lupus. No single blood test can determine whether a patient has Lupus. The diagnosis of Lupus is established by evaluating the constellation of symptoms and ruling out other diseases that can cause those symptoms. People with Lupus often have disease flares followed by a period of remission, but usually, it is lifelong. Lupus is mild in some who are able to lead a normal life but can be life-threatening in others. It is due to these reasons that Lupus is a very versatile, unpredictable disease and can be extremely challenging to diagnose. More than half of patients afflicted with Lupus suffered at least four years and saw three or more doctors before being diagnosed with Lupus, resulting in a delay in treatment and poor outcomes. The leading causes of complications and death in Lupus include serious infections related to the disease or medications, heart disease and kidney disease. Patients may be on dialysis or require a kidney transplant if the disease is very severe.
How can we treat Lupus?
Early diagnosis and proper treatment can minimize symptoms, reduce inflammation and prevent serious organ damage and death. While there is not yet a cure for this disease, an array of drug therapies are available which act by suppressing the overactive immune system that is causing the inflammation and damage. While on these medications, patients need to be monitored regularly, as they can have side effects. This warrants extreme vigilance on the rheumatologist’s part, along with strict compliance, open communication and awareness on the patient’s end. These medications include corticosteroids like prednisone, which are very effective in decreasing inflammation rapidly, but need to be used very cautiously due to a wide spectrum of serious side effects. Other medications such as Azathioprine, Mycophenolate Mofetil, Methotrexate, Belimumab and chemotherapy medications like Rituximab and Cyclophosphamide have been used with success depending on the symptoms and organs affected.
It is very important to eat a wellbalanced and nutritious diet. Weight loss is emphasized, as the medications used to treat Lupus can cause significant weight gain. Exercise and physical therapy play an important role in these patients who can have severe joint and muscle problems. Being aware of sun-induced damage and taking precautions by avoiding sun exposure and using sunscreen with an SPF of 30 or more plays an essential role not only in preventing the skin rash, but also internal organ involvement.
What is our goal?
We understand that a disease like this can cause a significant impact on the physical and psychological wellbeing of the patient and their family. The Center of Excellence for Arthritis and Rheumatology at LSU Health Shreveport aims to spread the message about the patient’s role in coping with and better managing their disease, lifestyle modifications, and to develop a support group to ensure that our patients know they are never alone in this battle.
Dr. Samina Hayat is the Robert E. Wolf Professor of Medicine and Rheumatology, Chair of Rheumatology Department, and the director of Center of Excellence for Arthritis and Rheumatology at LSU Health Shreveport. Dr. Mamatha Katikaneni is an assistant professor and director of the Rheumatology Clinic for the Center of Excellence for Arthritis and Rheumatology. The Center for Excellence in Arthritis and Rheumatology (CEAR) is one of the country’s exemplary rheumatology programs, which has engaged in a multidisciplinary and interdepartmental clinical, research and education mission for more than 10 years. www.lsuhscshreveport.edu/cear