What is lupus?

Lupus is a chronic autoimmune disease characterized by inflammation in one or more parts of the body. It occurs when your body’s immune system – your defence against viruses and bacteria – can’t tell the difference between intruders and its own tissues. So it attacks its own tissues and organs causing inflammation, pain and damage. Lupus can target any tissue or organ of the body including skin, muscles, joints, blood and blood vessels, lungs, heart, kidneys and the brain. It is part of the family of diseases that includes rheumatoid arthritis, multiple sclerosis, juvenile diabetes and scleroderma. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments.

While there’s no cure for lupus, it is treatable. In the last 30 years, significant advances in diagnosis, treatment and follow-up have helped physicians and patients succeed in bringing lupus under control and improving life expectancy and quality of life. With close follow-up and treatment, 80%-90% of people with lupus can expect to live a normal life span and it is seldom fatal.

In Canada, more than one in 1,000 men, women and children are living with lupus. According to the Lupus Foundation of America, lupus is more common than multiple sclerosis, muscular dystrophy or leukemia. The majority of people diagnosed with lupus are women between the ages of 15 to 45. Especially impacted are women of African, Caribbean, Asian and Aboriginal descent.

Lupus varies in intensity and degree. Some people have a mild case, others moderate and some severe, which tends to be more difficult to treat and control.

Signs and symptoms of lupus

When people use the term lupus, it usually refers to systemic lupus erythematosus, or SLE, which is the most common form of the disease.

The signs and symptoms of lupus vary considerably from person to person and may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.

The signs and symptoms of lupus depend on which body systems are affected by the disease. The most common include:

  • fatigue
  • fever
  • joint pain, stiffness and swelling
  • a butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
  • skin lesions that appear or worsen with sun exposure (photosensitivity)
  • small ulcers inside the nose or mouth
  • fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
  • shortness of breath
  • chest pain, worse when lying down or inhaling
  • swelling of the feet and legs
  • dry eyes
  • headaches, confusion and memory loss
  • hair loss
  • weight changes

Causes of lupus

Lupus is caused by a complex interplay of genes, hormones and environmental factors. Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. However, having a family member with lupus does not necessarily mean you will develop the disease. In most cases, the cause is unknown. Lupus is not an infection and it is not contagious.

Potential triggers for developing lupus include:

  • Sunlight:exposure to the sun may bring on lupus skin lesions or trigger an internal response in susceptible people.
  • Infections:having an infection can initiate lupus or cause a relapse in some people.
  • Medications:lupus can be triggered by certain types of blood pressure medications, anti-seizure medications and antibiotics. People who have drug-induced lupus usually get better when they stop taking the medication. Rarely, symptoms may persist even after the drug is stopped.

Diagnosis of lupus

Lupus is difficult to diagnose because no two cases are alike. It can produce a variety of symptoms in different people. It may take some time for a physician to make the diagnosis because no one test can diagnose it. A combination of blood and urine tests, signs and symptoms, and physical examination findings leads to the diagnosis.

Because the symptoms of lupus can mimic so many other health problems, a number of other illnesses must be ruled out first. A patient may need to see a number of specialists such as doctors who treat kidney problems (nephrologists), blood disorders (hematologists) or nervous system disorders (neurologists) to help with diagnosis and treatment.

People with lupus usually start by seeing their family physician but may be referred to a rheumatologist who specializes in the diagnosis and treatment of inflammatory joint conditions and immune disorders.

Treatment of lupus

The goal of any treatment is to bring the symptoms and the disease under control so that someone with lupus can lead as normal a life as possible. Determining if symptoms should be treated and what medications to use requires a careful discussion of the benefits and risks with a doctor. Since symptoms flare and subside, medications or dosages may need to change.

Medications most commonly used to control lupus include:

  • Nonsteroidal anti-inflammatory drugs (NSAIDs)

Over-the-counter NSAIDs, such as naproxen sodium (Aleve) and ibuprofen (Advil, Motrin IB, others), may be used to treat pain, swelling and fever associated with lupus. NSAIDs are milder than many other lupus drugs and may be taken either alone to treat a mild flare or in combination with other medications. Stronger NSAIDs are available by prescription.

  • Antimalarial drugs

Medications commonly used to treat malaria, such as hydroxychloroquine (Plaquenil), affect the immune system and can help decrease the risk of lupus flares. Anti-malarials are the key to controlling lupus long term, and some lupus patients may be on Plaquenil for the rest of their lives.

  • Corticosteroids

Prednisone and other types of corticosteroids are some of the most effective treatments for reducing the swelling, warmth, pain and tenderness associated with the inflammation of lupus.  However, they can also cause unwelcome side effects, so are usually prescribed only when other medications—specifically NSAIDs and anti-malarials—are not sufficient enough to control lupus. High doses of steroids such as methylprednisolone (A-Methapred, Medrol) are often used to control serious disease that involves the kidneys and brain. The risk of side effects increases with higher doses and longer-term therapy.

  • Immunosuppressants

Drugs that suppress the immune system may be helpful in serious cases of lupus. Examples include azathioprine (Imuran, Azasan), mycophenolate mofetil (CellCept) and methotrexate (Trexall). Many immunosuppressants were originally used in patients who received organ transplants to help prevent their bodies from rejecting the transplanted organ. They are now also used for the treatment of certain autoimmune diseases, such as lupus and rheumatoid arthritis.

  • Biologics

A different type of medication, belimumab (Benlysta) administered intravenously, also reduces lupus symptoms in some people.

Alternative treatments of lupus

It’s important to discuss alternative therapies with your doctor to weigh the benefits and risks and ensure they won’t interfere with medications. While no alternative therapies have been shown to alter the course of lupus, some may help ease symptoms.

Complementary and alternative treatments for lupus include:

  • Dehydroepiandrosterone (DHEA):supplements containing this hormone may help fatigue and muscle pain. It may lead to acne in women.
  • Fish oil:fish oil supplements contain omega-3 fatty acids that may be beneficial for people with lupus. Preliminary studies have found some promise, but more study is needed.
  • Acupuncture: this therapy uses tiny needles inserted just under the skin. It may help ease the muscle pain associated with lupus.

Living with lupus

Lupus is different for each individual. It often appears in cycles, which can consist of:

  • a lupus flare, with severe acute symptoms needing medical attention
  • a chronic phase, when symptoms continue but are less severe
  • a remission, when symptoms may disappear completely for long periods, although they can return

In the chronic and remission phases, it’s important for people with lupus to practise good health and lifestyle habits to help maintain their well-being.

If you or someone you know is living with lupus, there are a number of ways to help cope with the physical and emotional challenges of the disease:

  • Learn all you can about lupus and be aware of how your body reacts.Write down any questions you have about lupus so you can ask your doctor at your next appointment. An informed patient can watch for warning signs and alert the doctor early on. The more you know about lupus, the more confident you’ll feel in your treatment choices. A good working relationship with your doctor is crucial to the success of your treatment.
  • Talk about lupus with your friends and family. Explain ways they can help out when you’re having flares. Family and friends can’t tell if you’re having a good day or a bad day unless you tell them. Be open about what you’re feeling so your loved ones know what to expect.
  • Take time for yourself.Cope with stress by taking time for yourself. Read, meditate, listen to music or write in a journal. Find activities that calm and renew you.
  • Join a support group.Talk to other people who have lupus through support groups in your community or online. They can offer unique support because they’re facing many of the same obstacles and frustrations.

For more information or to speak to one of our Nurse Case Managers, contact us at 1-866-883-5956.

 SOURCES

Johns Hopkins Lupus Center

Lupus Canada

Lupus Foundation of America

Lupus Ontario

Mayo Clinic