Learning about Lupus: Answering the Important Questions about Lupus-Related Pain

If you had to do an elevator description of what lupus is, what would you say? 

“Lupus is a chronic autoimmune disease where the body’s immune system has difficulty differentiating between your own normal healthy cells and foreign cells, and begins attacking healthy tissue, leading to widespread inflammation and pain. Lupus can affect a variety of organs in your body including your skin, heart, blood vessels, brain, kidney, joints, bones and lungs.” 

 - Dr. Matthew Kohler

Are there different types of lupus? What are they and how are they different?  

“There are four types of lupus, including Systemic Lupus Erythematosus (SLE), Cutaneous Lupus, Drug-Induced Lupus and Neonatal Lupus.   

• The most common form is systemic lupus erythematosus (SLE) which can have various mild or severe presentations. The first example is inflammation of the kidney—also called lupus nephritis—which impacts your body’s ability to filter waste from the blood. The second example is inflammation of the nervous system and brain, thereby causing memory change, confusion, headaches or even stroke. Inflammation of the brain’s blood vessels can cause high fevers, seizures or behavior changes. The third example is coronary artery disease resulting from the buildup of deposits in the artery walls.  
• The next form of lupus, cutaneous lupus, is isolated to the skin. Symptoms of cutaneous lupus involve rashes or lesions in sun-exposed areas, which may worsen with increased UV-exposure.  
• Next is drug-induced lupus which develops from having lupus-like side effects from prescription drugs. Some of the common drugs connected to drug-induced lupus are hydralazine (used to treat hypertension), procainamide (used to treat cardiac arrhythmias) and isoniazid (used in tuberculosis treatment). Although specific criteria for this form of lupus have not been officially established, many of the symptoms overlap with SLE. These include pain and swelling of muscles and joints, as well as serotosis (internal tissue swelling) and flu-like symptoms.  
• The last form of lupus is called neonatal lupus, which is a rare disease that infects infants. Sick infants may show symptoms of a skin rash, liver problems or low blood cell counts at birth; fortunately, such symptoms tend to improve over the next six months.” 

 - Dr. Raj Maniam

Why do you think that lupus is still relatively misunderstood despite it affecting so many?

“There is no single test that can diagnose lupus and due to variability on how it presents itself, it is not always easy for physicians to diagnose. There must be a strong clinical suspicion and oftentimes, patients do not seek medical care until symptoms become severe.

Most Americans may have heard of the term Lupus, however are unaware of what the disease actually is and how it presents. While many consider lupus to be a “rare” disease, it is actually more common than you think. Almost 1.5 million Americans have some form of lupus and at least five million have been diagnosed worldwide. Although lupus is a chronic disease and severity of symptoms can vary, with appropriate medical care patients can still live a full and active life.”

 - Dr. Matthew Kohler

How does someone develop lupus? Is it hereditary? Is it something you can “catch”?

“Lupus has both epigenetic and genetic factors that can contribute to its onset. Epigenetic factors refer to environmental stresses that promote the symptoms of lupus. Some people have an inherited genetic predisposition for lupus, meaning due to familial genetics some patients have a higher chance of triggering lupus. Some potential triggers are sunlight which may bring on skin lesions, infections that can cause relapse from patients in remission, and medications that can trigger drug-induced lupus.

Additional risk factors that can increase your chance of getting lupus include your sex (lupus is more common in women), your age (onset is most common from 15 to 45), and your race (there are more common occurrences of lupus in African Americans, Hispanics and Asian-Americans).”

- Dr. Raj Maniam

What are some signs that you have lupus? Are there both obvious and subtle signs?

“Unfortunately, Lupus can sometimes be difficult to diagnose. It may mimic other ailments, but the most distinctive presentation of lupus is an identifying facial rash in the shape of butterfly wings across both cheeks. In medical terms, this is called a ‘malar rash’.

Lupus is often triggered by an infection, specific drugs, or sunlight.  Signs and symptoms of lupus depend on which body systems are being affected, but the common signs aside from the butterfly rash include: persistent fatigue, fevers, joint pain, stiffness, or swelling, skin lesions that appear or worsen with sunlight, white or blue fingers or toes, shortness of breath, chest pain, dry eyes, headache, confusion, and memory loss.”

- Dr. Matthew Kohler

How is lupus diagnosed? If caught early, is that a good thing?

“Lupus can be hard to diagnose because there are many symptoms yet no single test that can confirm a diagnosis. In order to assist your doctor in finding out if you have lupus, it is important to give a thorough medical history of your symptoms, indicate any family history of lupus or other autoimmune diseases, and complete a full physical exam as well as a skin or kidney biopsy, a blood test, and a urine test. Each of these will help to indicate if you have the auto-antibodies that attack your healthy cells.

Since lupus can range from having mild to life threatening symptoms, it is crucial that one receives as early a diagnosis as possible. Early diagnosis by a rheumatologist or a specialist who is trained and experienced with the treatment of arthritis, lupus and other joint, muscle and bone diseases may help you plan the management of your lupus symptoms before they get life-threateningly severe.” 

- Dr. Raj Maniam

Is lupus treatable? Are there ways you can manage it via lifestyle or medications?

“Patients with lupus pain can go on  medications to manage their symptoms. These are typically anti-inflammatory non steroid drugs (NSAIDs) to treat fever or arthritis pain. Specifically, patients may take Aspirin to control symptoms, reduce inflammation and lower blood coagulation. Patients may also take Acetaminophen, Ibuprofen, Naproxen, and Celecoxib, among others, to manage pain. Additionally, patients can try corticosteroids that are designed to work like cortisol, which is a natural steroid hormone made in your body. This means they can act as a powerful anti-inflammatory drug. Antimalarial drugs can be used to treat skin rashes, mouth ulcers, and joint pain, as well as improve overall lupus symptoms by decreasing the hyper-driven antibodies in your body. Lastly, immunosuppressive medications can be used to control inflammation and overactive immune systems. Research has also shown that monoclonal antibodies, such as Benlysta, represent a type of antibody protein that is developed in laboratories and bind with one type of substance in the body. These can be used to monitor and reduce the autoantibody levels and control the rate of disease activity.

Proper treatment and lifestyle management will significantly improve the overall quality of life for patients with lupus. It is important to stay physically active, keep a healthy diet, rest, wear sunscreen, and limit UV-exposure. In general, a nutritious, well balanced, and varied diet including all the food groups is important. One food that should be avoided is alfalfa, which has been associated with lupus-like syndrome and lupus flare-ups. Certain herbs, supplements, and vitamins should be screened and approved by a doctor before ingestion because there may be unintended interactions with medications.”

- Dr. Matthew Kohler

Edited By: Camden Rowe