Myth vs. Fact: The truths about this autoimmune disease

Systemic Lupus Erythematosus (SLE or lupus) is a chronic autoimmune disease that can affect any organ in the body and cause inflammation. The inflammation is a result of the immune system (which is meant to fight infections and foreign cells), for reasons not clearly understood, getting incorrectly programmed to fight their own cells in the body, resulting in organ damage and dysfunction.

Lupus can be classified into two main types: Systemic lupus and skin lupus. Systemic lupus can affect any organ system in the body. On the other hand, skin lupus, or discoid lupus, mainly affects the skin without internal organ inflammation. This can present as a rash on the face or hair loss. Other types of lupus that can be seen are drug-induced lupus, which is due to certain medication and is resolved when the medicines are stopped, and neonatal lupus in babies, which is due to the transfer of inflammation and antibodies from the mother’s blood to the baby.

There are several misconceptions about lupus. Debunking common myths about lupus is important in understanding the condition, and to help patients cope with the disease and improve their quality of life. May is Lupus Awareness Month, so this is the best time to find out some facts about lupus.

Lupus is contagious: Myth – You cannot “catch” lupus from someone or “give” lupus to someone. A person will not contract lupus by simply touching someone with a lupus rash or through sexual activity. Lupus is not an infection but is a reprogramming of the immune system to fight their own body.

Lupus is rare: Myth – The Lupus Foundation of America estimates about 1.5 million Americans and five million people worldwide have this disease. It is possible that someone you know may have lupus.

Lupus only affects adult women: Myth – Lupus can affect people of any age and can affect men, but is most common in women between the ages of 15 and 45 years. About 15% of patients with lupus are children, and they tend to have more severe and difficult to treat disease. Lupus is two to three times more common in African-American and Hispanic women compared to Caucasians and other ethnicities.

The butterfly rash is the only rash of lupus: Myth – Lupus rashes take many forms. The butterfly rash on the face is the characteristic rash, but it may present with a spectrum of other types of rash as small spots or red circles or blisters or disc-shaped scarring lesions of the skin on the arms, legs, chest, scalp or back.

Lupus mainly affects the joints and skin but can affect any organ: Fact – Lupus can affect the skin, muscles and joints, mucosal membranes of mouth and nose, kidneys, brain, lungs, heart, gastrointestinal tract, blood counts and bone marrow, and lymph nodes. It can cause dry eyes and mouth and can cause vague symptoms like unexplained fatigue, fever and weight loss.

Depression is a common symptom in patients with lupus: Fact – Depression may be caused by inflammation of lupus affecting the brain or may be a result of the chronic disabling symptoms. It requires treatment with a combination of support and group therapy, medications and psychotherapy. The correlation between depression and lupus is very significant, and we cannot afford to ignore it.

Having a positive ANA test result means that you have lupus: Myth – The Anti- Nuclear Antibody (ANA) is a blood test that detects antibodies produced by the immune system that can fight the own cells. However, these antibodies can be present in up to 10% of the normal population without having lupus, or it could be from another cause such as infection, other autoimmune diseases or cancer. A diagnosis of lupus is made based on the entire clinical presentation of inflammation in multiple organs after ruling out other causes and not just a blood test being positive. The ANA should not be checked without having the concerning symptoms of lupus.

Lupus is unpredictable: Fact – No two cases of lupus are alike. Lupus can come on suddenly or develop gradually over time. It can range from mild to severe and even be life-threatening. Symptoms can flare up periodically or go into remission. Lupus can present in many ways depending on which organs it involves. Lupus is a disease with many faces and is known as the “great mimicker” since it causes symptoms that could also be due to many other causes like infections or cancer. This makes diagnosing lupus very challenging, and most patients go five to six years seeing multiple physicians before being diagnosed with lupus, thus delaying the treatment and resulting in permanent organ damage.

Lupus is a terminal disease: Myth – In most cases, lupus is not fatal if it is caught early and treated appropriately. The more severe cases of lupus are those with kidney or brain involvement. The most common causes of death in patients with lupus are infections (due to the immune system being suppressed by medications used to treat lupus) and heart disease (due to the inflammation).

Lupus is curable: Myth – Lupus does not have a cure as of now, but the appropriate treatment can drastically improve the quality of life for patients by limiting the inflammation and organ damage. The fight to cure lupus is ongoing, and research is being continuously done to get closer to that goal. Perhaps one day there will be a cure for lupus. Until then, rheumatologists treat lupus with a combination of medications like nonsteroidal anti-inflammatory drugs, anti-malarial drugs, corticosteroids like Prednisone and various immunosuppressants.

Prednisone has many serious side effects: Fact – Prednisone is the most commonly used medication to treat lupus and suppress the severe inflammation initially and during severe flares. Prednisone should be tapered as soon as possible due to a multitude of severe irreversible side effects such as diabetes, hypertension, cataracts, central obesity, avascular necrosis, osteoporosis, increased risk of infections, like shingles, and gastric ulcers. Patients begin steroid-sparing immunosuppressants that will help keep them in remission to enable lowering the dose and duration of Prednisone use. The biggest challenge faced in tapering the Prednisone dose is differentiating a lupus flare from the ill feeling due to the withdrawal of the Prednisone. Hence, the taper needs to be done slowly and supervised closely by the rheumatologist with frequent monitoring.

People with lupus should not exercise: Myth – Patients with lupus should exercise under the guidance of their rheumatologist and physical therapist since strengthening the muscles and improving range of movements of the joints is an essential component in the treatment of lupus. Exercise also releases hormones called endorphins, which make the patient feel better and helps deal with depression.

Patients with lupus cannot work: Myth – When diagnosed early and treated appropriately, a person with lupus can lead a normal life as long as they are in remission. Patients are encouraged to lead a normal and active life while their symptoms are controlled.

Women who have lupus cannot become pregnant: Myth – More than half of the women with lupus deliver healthy babies. Some women, depending on the nature of their disease, can give birth to babies with a skin rash, low cell counts or heart problems that require close monitoring by a multidisciplinary team including a high-risk obstetrician and their rheumatologist. Some medications can cause birth defects, and it is essential to discuss the risks with your obstetrician and rheumatologist before planning for pregnancy. Some women can have frequent miscarriages or preterm delivery because of preeclampsia (high blood pressure) due to the increased propensity to form blood clots in the placental vessels, a condition called antiphospholipid syndrome. Women with active and severe lupus, like inflammation in the kidney or brain, are advised to avoid becoming pregnant for six months after their disease is in remission to prevent maternal and fetal risk, including death.

Lupus patients are never alone: Fact – Lupus carries a social stigma, and patients often keep their diagnosis a secret. This is possibly due to the constant suffering from chronic intangible and unexplainable symptoms like fatigue, pain and depression, or not wanting sympathy or being ashamed of the scarring rash and changes in their body. A person dealing with a chronic and disabling disease like lupus is facing a constant battle with their body and mind every day to live and function.

There may be many times when a lupus patient may feel like giving up on this battle. It is during these times that they need to find their strength from their family, friends and the community. It is our job as a part of the health -care community working on lupus awareness to provide “Lupus Warriors” with a safety net and support system that they can reach out to in a time of need. In our effort to accomplish this, a support group is being formed to take place on the first Saturday of every month from 11 a.m. until noon at LSU Health Shreveport starting this June. Email momfightlupus@gmail.com for more information and to register for the support group.

Mamatha Katikaneni, MD, is an assistant professor in the Center of Excellence for Arthritis and Rheumatology at LSU Health Shreveport, and codirector of the Rheumatology Clinic at Ochsner LSU Shreveport Academic Medical Center. Matthew Malus, MD, is a third-year internal medicine resident at LSU Health Shreveport.