Lupus: Autoimmune Characteristics and Management

Systemic lupus erythematosus (lupus) is a chronic autoimmune disease that can affect any organ or tissue, including the skin, joints, heart, brain, lungs, and kidneys. The unpredictable nature of lupus can often leave people feeling uneasy.

People who are in the early stages of lupus may experience vague symptoms, such as fatigue and joint pain, while those in a flare can experience these symptoms, plus more like skin rashes or organ involvement.

Although lupus presents differently in each person, most people with lupus experience periods of remission, when they feel well and symptoms subside, and other periods known as flares or flare-ups, in which previous symptoms return or new symptoms appear. These flares can range from mild to severe.

Autoimmune Lupus: The Basics

In lupus, the immune system attacks healthy parts of the body. These unpredictable attacks cause inflammation, leading to various symptoms and sometimes permanent damage.

The exact cause of lupus is unknown. However, studies have found that a combination of environmental, genetic, and hormonal factors play a role in its development. Lupus is not contagious.

Several genes have been identified as associated with lupus. People with these genes who are then exposed to certain environmental triggers may develop lupus.

Environmental triggers such as ultraviolet B (UVB) radiation from the sun, certain infections like the Epstein-Barr virus, and toxins like cigarette smoke can alter the body’s immune response when combined with genes associated with lupus.

Common environmental factors that are associated with the development of the disease and flares include:

• Emotional stress caused by events like illness, a death in the family, or divorce
• Exhaustion
• Infections and other illnesses
• Penicillin or other antibiotics
• Physical stress caused by things like surgery, injury, pregnancy, or giving birth
• Sulfa drugs such as Bactrim and Septra (trimethoprim-sulfamethoxazole)
• Sun
• Tetracycline drugs that make you more sun-sensitive, like Minocin (minocycline)

Affected Systems

Lupus can affect the entire body. When lupus attacks the organs, further complications can occur.  Major organs that can be affected and lead to complications include:

• Brain
• Heart
• Kidneys
• Lungs

Risk Factors

Most people who are diagnosed with lupus are diagnosed between the ages of 15 and 44. Nine times more females are diagnosed with lupus than males. Black women are diagnosed with lupus more often than women of any other race.

People who have relatives with lupus have a 5% to 13% chance of developing lupus.

Symptom Onset and Progression

At the start of lupus, you may feel worn down and almost like you’re getting sick. Some people even experience fever with lupus.

Early symptoms, such as fatigue and joint pain, can make everyday tasks more difficult. Other early symptoms, such as hair loss and rashes, can make you notice that something is occurring within your body.

People in a flare often experience a return of their early symptoms along with new symptoms. New symptoms may include symptoms that indicate organ involvement, such as shortness of breath and memory problems.

Lupus symptoms experienced early on can continue to appear and disappear throughout life. These include:

Other lupus symptoms are:

• Confusion
• Depression
• Dizziness
• Fevers
• Headaches
• Pain when breathing or lying down
• Seizures
• Sensitivity to sunlight, which may cause rashes, fatigue, and increased symptoms
• Sores in the nose or mouth
• Stomach pain
• Swelling around the eyes
• Swollen legs

How People Know They Have Lupus

Early signs of lupus are often vague. In the disease’s beginning stages, these symptoms are sometimes mistakenly attributed to different conditions or to simply having a busy life.

The most common initial symptoms of lupus are fatigue, joint pain, and skin rashes.

It can take up to two years or more from the onset of symptoms to diagnosis. It is not uncommon to see multiple providers before reaching a diagnosis.

Keeping track of your symptoms and presenting the full picture to your provider can help with diagnosis. A rheumatologist (a physician who specializes in inflammatory and autoimmune diseases that affect the joints, muscles, and bones) can be key to diagnosis.

Prescription Treatments and Therapies

Although lupus is a lifelong condition with no cure, many treatment options are available to help people live well with it. The goals are to reduce disease activity and minimize flares, prevent organ damage and further complications, and relieve pain and fatigue. Treatments include:

• • Nonsteroidal anti-inflammatory drugs (NSAIDs): Over-the-counter (OTC) medications such as aspirin or Advil or Motrin (ibuprofen) can help with pain, inflammation in the joints, and mild swelling in the muscles and joints.
  • Antimalarial drugs: Plaquenil (hydroxychloroquine, HCQ) and Aralen (chloroquine phosphate) are common antimalarial medications for treating lupus. HCQ has shown it can increase survival rates, reduce flares, and prevent organ damage.
  • Corticosteroids: Corticosteroids, such as prednisone, can treat flares and quickly stop any disease activity that threatens major organs, such as the kidneys.
  • Immunosuppressants: Immunosuppressants such as Rituxan (rituximab) or CellCept (mycophenolate) can slow down or stop the immune response. They can treat lupus nephritis and complications with the central nervous system. They are usually given for more severe cases of lupus.
  • Biologics: Biologics such as Benlysta (belimumab) target the body’s immune system. They are given via injection or infusion. These medications can get expensive, but the drug companies that make them often have patient support programs to help you access them.

• Other medications: Medications for treating other diseases linked to lupus may also help with symptoms. These medications can include drugs to treat high blood pressure or osteoporosis (progressive loss of bone mass and bone mineral density).

Medication Side Effects 

While lupus medications can help minimize symptoms and reduce the number of flares, they also have side effects:

• • NSAIDs: Although relatively safe, long-term use of NSAIDs can cause several side effects, including indigestion, gastrointestinal (GI) bleeding, ulcers, high blood pressure, and chronic kidney disease. The GI side effects can be avoided by using a type of NSAID called a COX-2 inhibitor, such as Celebrex (celecoxib), or adding a proton pump inhibitor to the NSAID.
  • Antimalarials: Drugs like hydroxychloroquine can cause diarrhea and headache when first taken. These side effects typically go away as the body adjusts to the medication. People who take these drugs also need to have their eye health monitored for retinal toxicity, a rare but serious side effect that causes deposits on the retina (the light-sensing area at the back of the eye).
  • Corticosteroids: Long-term use and high doses of steroids can cause weight gain, high blood sugar, osteoporosis, cardiovascular disease, and increased risk of infection.
  • Immunosuppressants: Immunosuppressants increase the risk of infection. Other side effects include nausea, vomiting, mouth sores, and loss of appetite.

• Biologics: Biologics can increase the risk of infection. Common side effects include reaction to the infusion, fatigue, headache, and nausea. Benlysta (belimumab), specifically, can worsen depression and risk of suicidality.

Self-Care and Complementary Therapies 

Though treatments work to control disease activity and reduce the amount and severity of flares, living well with lupus also requires a certain amount of personal responsibility for your own health.

Self-care for lupus is about learning to live in your new normal in a way that makes sense to you. Although self-care will look different for everyone, here are some things to think about as you discover what you need to do to take care of yourself.

Give Yourself Permission to Grieve

Adjusting to life with a chronic illness is hard. You may find yourself mourning the life you used to have, and that’s OK. Allow yourself to grieve.

Give yourself permission to be angry or sad. Just because you get an official diagnosis does not mean you have to accept it right away. It will take time to adjust to your new normal.

Find Ways to Conserve Energy

Fatigue affects most people with lupus and can have a significant effect on their quality of life. You may find that you only have a certain amount of energy every day. When that energy is gone, you may have nothing left to give.

In this case, self-care may look like altering simple tasks. For example, put a chair in the shower if washing your hair worsens your fatigue. Sit down to get dressed or put on makeup. Buy cut vegetables or ask a friend to help prepare meals.

Learn to Say No

Not everyone will understand what you’re going through or how lupus affects you. Lupus is often an invisible disease.

No one can tell how fatigued you are or how much pain you are feeling. It’s OK to say no to happy hour with friends or taking on an extra task at work if you know it will worsen your symptoms. The more you tell people what you are going through, the more easily they will understand your challenges.

Complementary Therapies

Other nondrug therapies can also help minimize symptoms and improve quality of life. These include physical activities and exercises such as swimming, walking, biking, and strength training.

Working with a trainer or other exercise professional can help you find the right balance between strengthening your body and relieving your symptoms and overdoing the activity and worsening symptoms.

Mind-body practices such as acupuncture, tai chi, and yoga are also used, but their effectiveness has not been proven in lupus.

Finding a therapist or psychologist who deals with people living with chronic illness can help you learn to manage the uneasiness that comes with having an unpredictable disease.

Research Advancements Toward a Cure 

While there is no cure for lupus, studies are ongoing to find better treatments and a cure. Drugs that target lupus specifically are being developed and tested.

Medication and procedures that reset the immune system hold some promise of a cure. Stem cell transplants and chimeric antigen receptor T-cell therapy (CAR-T), which programs immune cells to fight or destroy the cells involved in lupus, are being studied.

How to Manage Flares

Lupus flares can be overwhelming, especially if you’ve been in a period of remission.

A flare often feels like you’re getting sick again. You may experience symptoms similar to those you experienced when you were first diagnosed, or you may experience new symptoms. Taking steps to reduce flares can help you manage the disease.

Avoid the Sun

The sun is a major trigger for lupus flares. Avoid being outdoors during peak sun hours (10 a.m. to 3 p.m). If you must be in the sun, seek shade and wear sunscreen and sun-protective clothing.

Maintain Good Health

People with lupus are more susceptible to infections and illnesses, which can trigger flare-ups. To prevent flare-ups, try to avoid others who are sick and wash your hands often.

Get regular exercise that is appropriate for you and your symptoms, practice good sleep hygiene, and find ways to reduce stress. If you smoke, stop.

Stay Compliant With Treatments

A healthcare provider creates a treatment plan to reduce flare-ups and prevent further complications and organ damage. Even if you are feeling better, stick to your treatment plan. People who stop taking hydroxychloroquine are at a higher risk of flares.

Prognosis and Effect on Life Expectancy 

Getting a diagnosis of lupus can throw you for a loop. You may wonder: Can I live a long, normal life? You may feel overwhelmed and think: How am I going to do this?

These thoughts are normal. The good news is that with improvements in treatment, people with lupus can now expect to live a long, healthy life. Though you will have moments that are overwhelming, you will eventually learn how to live with the disease.

Support and Resources

You don’t have to face lupus alone. There are many online and in-person support groups in which you can talk to other people who are going through the same things you are.

The Lupus Foundation of America is a resource for educational programs to help you live well with the disease. They also provide resources to help you navigate the medical system and can help you find the right specialists for treatment.

Summary

Lupus is a chronic autoimmune disease that can affect any organ in the body including the skin, lungs, heart, brain and kidneys. People who are in the early stages of the disease may experience non-specific symptoms like joint pain and fatigue that can lead to a delayed diagnosis or a misdiagnosis.

The unpredictable nature of lupus can cause people to feel uneasy and make life with the disease harder.

The exact cause of lupus is unknown, but it is believed that a combination of hormonal, genetic, and environmental factors leads to the development of the disease. Women and Black Americans, especially Black women, are more likely to develop the disease than their peers.

Symptoms range from joint pain and fatigue to hair loss, skin rashes, fevers, headaches, and skin rashes. Treatment options exist to minimize symptoms and reduce the number of flares. Self-care and complementary therapies can help you live well with the disease.

Although there is no cure, research is ongoing to find treatment options and a possible cure. Most people with lupus who are treated for the disease can live a long life and reach normal life expectancy. The Lupus Foundation of America is a helpful resource for people with the disease.