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OVERVIEW

What is lupus?

Lupus is a disease that affects your immune system. An immune system that is functioning well has antibodies that fight off viruses, bacteria and other foreign substances. In people who have lupus, the immune system becomes overactive and attacks healthy cells and tissue.

There are several kinds of lupus.  Each type has its own symptoms and affects your body in different ways.

Systemic lupus erythematosus (SLE) is the most common and most serious type of lupus.  It affects multiple body symptoms, including blood vessels, joints, kidneys, skin, the heart and lungs, and even the brain and nerves. Symptoms of SLE can be mild or severe.

Discoid lupus erythematosus (DLE) is sometimes called cutaneous lupus erythematosus. This kind of lupus only affects the skin. Some people who have DLE may have SLE, too. The first symptom of DLE is often a red rash or scaly patch on the face or scalp. It is typically in the shape of a circle or disk. The rash may last a few days or several years. It can go away for a while and then come back. Sometimes DLE can cause sores in the mouth or nose.

Drug-induced lupus is caused by a reaction to certain long-term prescription medicines. The symptoms of this type of lupus are similar to symptoms of SLE, including muscle and joint pain, a rash and fever. But drug-induced lupus does not cause problems with the kidneys, the heart, the brain or blood vessels. The symptoms are often mild, and most of the time will go away after you stop taking the medicine. This kind of lupus is more common in men who take medicine for heart conditions.

Neonatal lupus is a rare form of lupus that affects newborn babies. Babies who have neonatal lupus are born with a skin rash and sometimes liver and heart problems. For most babies, the symptoms gradually go away over several months. In rare cases, neonatal lupus can cause a serious heart problem. Healthcare providers think that neonatal lupus might be caused in part by certain proteins in the mother’s blood that are passed on to the baby at birth. If you are pregnant and know you have SLE, your healthcare provider will probably want to monitor you and your baby for certain complications. However, most babies of mothers who have SLE are entirely healthy.

SYMPTOMS

 What are the symptoms of lupus? Lupus can affect many parts of the body, including your joints, skin, kidneys, heart and lungs. Symptoms can develop quickly or slowly. Symptoms can also come and go, and they can be mild or severe.

Not everyone who has lupus has the same symptoms. Common symptoms of lupus may include:

• Fever
• Constant fatigue
• Sensitivity to the sun or light
• Joint pain or swelling
• Muscle pain
• Chest pain with deep breathing
• Trouble thinking, and/or memory problems
• Kidney problems

Many people also have symptoms that affect their skin and hair, such as:

• Red rashes, often on the face and in the shape of a butterfly (called a malar rash)
• Mouth ulcers
• Hair loss (alopecia)

Lupus may also cause symptoms that affect the blood and blood vessels:

• Low blood count
• Blood clots
• Pale or blue fingers or toes from cold or stress (Raynaud’s Disease)

Less common symptoms include:

• Swollen glands
• Seizures
• Weight loss or weight gain
• Dry eyes
• Severe headache
• Dizziness
• Stroke
• Depression
• Hallucinations
• Repeated miscarriages or other infertility problems

Children can have the same symptoms of lupus as adults.  The most common symptoms in children are:

• A red butterfly-shaped rash (called a malar rash) over the bridge of the nose and the cheeks.
• Low red blood cell count (anemia)
• Low white blood cell count (leukocytopenia)
• Severe brain or kidney problems

It is common for symptoms of lupus to come and go. Often, they may disappear for a period of time called remission. You may get new symptoms all of a sudden. When symptoms appear or get worse, it’s called a “flare.” You may have swollen joints and muscle pain one week and then no symptoms at all the next week.

CAUSES & RISK FACTORS

What causes lupus?

Lupus can affect anyone, but it is more common in women between the ages of 15 and 44. Women of African, Caribbean, Asian and Aboriginal descent are more likely to have lupus than people of other races.

DIAGNOSIS & TESTS

How is lupus diagnosed?

Lupus is a disease that is known for being difficult to diagnose. The symptoms are different from person to person. Sometimes, the symptoms may mimic those of another disease. Often, lupus symptoms can come and go. It can sometimes take several years to receive an official diagnosis.

Getting an early, accurate lupus diagnosis can reduce its long-term effects.

• There is not just one test healthcare providers can use to tell if you have lupus. Healthcare providers must consider many different sources of information. Your healthcare provider may look at Antinuclear antibody (ANA) test. This test checks for antibodies to the nucleus of your cells. A positive result means that your immune system may be attacking healthy cells. This does not always mean that you have lupus. Your healthcare provider may recommend you see a specialist for more testing.
• Complete blood count. Lupus often affects a person’s red blood cell, white blood cell, and platelet count. This test checks for anemia or the presence of certain proteins in your blood.
• Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) tests. Results from these tests are used to tell if there is inflammation (swelling) in the body.
• Extra protein in the urine may show up in a lab test if lupus affects your kidneys.

Blood tests can also show how well your kidneys and liver are working, and if these organs have been affected by lupus. Your healthcare provider may also recommend a chest x-ray because lupus can sometimes cause swelling in the lungs and heart. An electrocardiogram test (ECG) checks for an irregular heartbeat or any damage to the heart that may have been caused by lupus.

Depending on your symptoms and test results, your healthcare provider also may order a skin or kidney biopsy.

PREVENTION

Can lupus be prevented or avoided?

You cannot avoid lupus since the cause of it is unknown. However, you may be able to help prevent flares. Common triggers include:

• Lack of rest
• stress
• Sun exposure,
• Exposure to fluorescent or halogen light
• Certain medicines
• Infection
• Injury

If you take medicines to help manage lupus, do not stop taking them without your health care provider’s approval. This can cause flares as well.

Knowing the things that cause flares can help you better cope with your symptoms.

TREATMENT

There is no cure for lupus, but treatments have improved in recent years. Treatment options vary depending on the kind of lupus you have, as well as your symptoms and the severity. Your treatment approach may change depending on if your symptoms are active or in remission.

If you have joint pain, sore muscles, or skin problems such as a rash, your healthcare provider may recommend that you take nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or naproxen. Medicine that is used to treat malaria, such as hydroxychloroquine, can also be helpful in treating symptoms of lupus and preventing flares. Some people have side effects from this kind of medicine, including problems with vision and muscle strength. Corticosteroids are another kind of medicine sometimes recommended to help with inflammation, but these medicines can have more serious side effects.

You will likely need stronger medicines if lupus has caused problems in your vital organs or the central nervous system (heart, brain, and blood vessels). Stronger drugs have the potential for more severe side-effects, and your healthcare provider will want to monitor you closely. High-dose corticosteroids, such as prednisone, can be given by mouth or through a vein in your arm. Medicines that suppress the immune system (cyclophosphamide, azathioprine) are sometimes used to help manage severe symptoms of lupus. Both kinds of medicine can help control dangerous symptoms quickly and prevent permanent damage. Sometimes they are used together at a lower dosage to lessen the risk of side effects.

Your healthcare provider may want you to stop taking certain drugs if your lupus symptoms go away for a time (into remission). This is because medicines used to treat lupus carry a high risk of side effects. However, even if you don’t have signs or symptoms, your lupus can return and cause future problems.  This may include  kidney disease and kidney failure, or atherosclerosis (build-up in the arteries) which can lead to heart attack or stroke. It is important to see your healthcare provider regularly for check-ups.

The following lifestyle changes may help relieve symptoms and/or prevent flares.

• Get plenty of rest. Fatigue is a common symptom of lupus, so try to maintain good sleep habits at night and, if possible, nap during the day, if needed.
• Get regular exercise. You might not always feel like it but is good for you. It will help you sleep better, as well as improve your mood and heart health. Try to avoid outside activities when you are having a flare. Exposure to the sun can make your symptoms worse.
• Protect yourself from the sun. Wear clothing that covers as much of your skin as possible. Always use sunscreen, even if you are only going outside for a short time. Don’t use tanning beds. Also avoid fluorescent and halogen lighting wherever possible. All of these are sources of ultraviolet light, which is known to trigger lupus symptoms.
• Quit or avoid smoking. Lupus can affect your heart and blood vessels. If you also smoke, you are at a much higher risk for cardiovascular disease.
• Eat a healthy diet. Avoid food that seems to make your symptoms worse. You may need to make changes to your diet if lupus causes high blood pressure, stomach or kidney problems. Try to eat a balanced and nutritious diet, including fruits, vegetables and whole grains.
• Take your medicine the way your healthcare provider tells you to.                             Ask your healthcare provider to explain the benefits and risks of your medicines. Depending on your symptoms and flares, you may need to make adjustments to the type of medicine you take, when you take it, and the dosage. Be sure to follow your healthcare provider’s instructions.
• Pay attention to your mental health. Tuning into your emotional well-being will help you cope with your condition and give you a sense of control. Living with lupus can mean learning to manage a number of physical, mental, and social problems.
• Develop a support network. Get help from your family, friends, healthcare provider, community, counselors and support groups. This support network can help you manage your condition. Be mindful of your symptoms, especially pain and fatigue. You should try to keep realistic expectations about what you can and cannot do. It will also help you better communicate your needs to those around you.

Living with lupus

When you are first diagnosed with lupus, you may have conflicting feelings. You may be relieved to finally know what is causing your symptoms. You may also have feelings of sadness, fear, confusion, and anger. Some people who have lupus have bouts of depression because of the challenges of living with this disease. Learning all you can about your illness can help you better cope with your symptoms, prevent flares, and deal with side effects and complications.

Lupus can affect and damage different parts of your body.

Kidneys

Your kidneys get rid of waste and other toxins from the body. Lupus can affect the kidneys and cause the structures that filter the blood to swell. Without treatment, lupus can lead to permanent kidney damage. If lupus affects your kidneys, you will probably need medicine to prevent serious damage. The most common symptom of kidney problems from lupus is swelling in the feet, legs, hands and eyelids.

Heart

Lupus can cause inflammation of the sac around the heart and cause chest pain. Though less common, but more seriously, it can harden the walls of the coronary arteries.  This can lead to angina and an increased risk of coronary artery disease. Lupus may also cause inflammation of the heart itself, which can lead to scarring and possible heart failure.

Lungs

Inflammation can also occur in the lining of your lungs. This can cause chest pain, which is often felt with deep breathing. People who have lupus are at risk of getting pneumonia.

Joints

Most people who have lupus have swollen and painful joints. These symptoms can come and go and may affect several joints at once. Usually there is no long-term damage.

Skin

People who have lupus often get a butterfly-shaped, red rash across their nose and cheeks. This is called a malar rash. Other parts of the skin may be affected. You could have raised bumps or dry patches, often on areas that are exposed to the sun. You could get sores inside your mouth or nose. Hair loss (alopecia) is common during flares. You may notice a blotchy purple color on your hands, fingers, or toes. This happens when blood does not flow well to the skin’s surface. It is called Raynaud’s Disease

Central Nervous System

Lupus can affect the brain and the nerves in the spinal cord. Symptoms include headaches, dizziness, mild confusion or memory problems, vision problems and changes in your mood. It can also lead to more serious problems, such as seizures or a stroke.

Blood

Lupus can cause the number of red blood cells, white blood cells, and platelets to decrease. Fewer red blood cells can lead to anemia, which is common in people who have lupus. White blood cells help the body fight infection, but lupus rarely causes them to be low enough to cause infection. Platelets help your blood to clot. A low platelet count can lead to easy bruising, nosebleeds and other bleeding. Lupus can also cause your blood to clot too easily or in unneeded places. . If the blood clot breaks away and travels through the bloodstream, it can block blood vessels and cause serious problems, such as a stroke, blood clots in the lungs (thrombosis) or repeated miscarriages.

Talking to others about lupus

Others won’t be able to see most of the symptoms caused by your lupus. When symptoms like pain, fatigue, depression, or joint stiffness make your regular tasks more difficult, it’s important to know how to talk to those around you.

It may help to start by explaining what lupus is not. Let people know that is not contagious, nor is it like cancer or HIV or AIDS. Then explain what lupus is. Let them know that it is chronic, which means you will have it forever, and that it affects each person differently.

Your conversations with others about lupus may change depending on who you are talking to.

• Tell your family and friends. Tell your loved ones about your symptoms and treatment. Make sure they understand that you will be okay, but that sometimes you may say “no” to things. They can help you to manage your schedule. They can also pitch in when you need help with things, like childcare or household tasks.
• Tell your job. If you feel it is okay to do so, you may want to work with your employer to make your workplace more comfortable for you. This might mean getting a better desk chair or requesting a flexible work schedule.
• Tell your school. You will want to register with your school’s accessibility office and learn about financial assistance opportunities. Talk to your professors, advisors, and maybe even your roommates about your lupus and what will you do if it causes you to miss something. Make sure not to overload your course schedule.

If you don’t feel that you have anyone you can talk to about your lupus, or if you’d like more resources, it may be helpful to seek out a therapist or an online support group.

Managing your lupus

It may take time to find the right combination of treatment options for your lupus. Work with your healthcare provider to take an active role in managing your lupus. You can do this by:

• Tracking your symptoms. Use a journal to track what your symptoms are and when they are worst. If you are taking medications, track any side effects you may notice.
• Take the medications your healthcare provider prescribes. If you experience side effects from a medicine, don’t just stop taking it. Talk to your healthcare provider first.
• Communicate regularly with your healthcare provider. Managing your lupus will require a team approach. Keep your healthcare provider updated on how you’re feeling. Make sure you express any questions or concerns. It can be helpful to bring your journal with you to appointments so that you remember everything you want to talk about.

Talking with your healthcare provider about all of your symptoms and getting the right lab tests are important steps to arriving at an accurate diagnosis.

FOR MORE INFORMATION

Lupus Canada

https://www.lupuscanada.org/