Lupus and its effects on women

Lupus is a chronic, autoimmune disease that affects more women than men. If you have lupus, your risk is higher for other health problems that are common in women, such as heart disease and osteoporosis.

What is lupus?

Lupus is a chronic (lifelong) autoimmune disease that can damage any part of the body. With autoimmune diseases, the body’s immune (defense) system cannot tell the difference between viruses, bacteria, and other germs and the body’s healthy cells, tissues, or organs. Because of this, the immune system attacks and destroys these healthy cells, tissues, or organs.

What are the different types of lupus?

There are several different types of lupus:

• Systemic lupus erythematosus (SLE) is the most common and most serious type of lupus. SLE affects all parts of the body.
• Cutaneous lupus erythematosus, which affects only the skin
• Drug-induced lupus, a short-term type of lupus caused by certain medicines
• Neonatal lupus, a rare type of lupus that affect newborn babies

What is systemic lupus erythematosus (SLE)?

SLE is the most common type of lupus. SLE can be mild or severe and can affect different parts of the body. Common symptoms include fatigue, hair loss, sun sensitivity, painful and swollen joints, unexplained fever, skin rashes, and kidney problems.

There is no one test for SLE. Usually your doctor will ask you about your family and personal medical history and your symptoms. Your doctor will also do some laboratory tests.

What is cutaneous lupus erythematosus (CLE)?

This type of lupus is a skin disease that can affect people with or without SLE. “Cutaneous” means “skin.” Symptoms may include rashes, hair loss, swelling of the blood vessels, ulcers, and sun sensitivity. To find out if you have cutaneous lupus and what kind it is, your doctor will remove a small piece of the rash or sore and look at it under a microscope.

There are two major kinds of cutaneous lupus:

• Discoid lupus erythematosus (DLE). A discoid rash usually begins as a red raised rash that becomes scaly or changes color to a dark brown. These rashes often appear on the face and scalp, but they may affect other areas. Many people with DLE have scarring. Sometimes DLE causes sores in the mouth or nose. If you have DLE, there is a small chance that you will later get SLE.
• Subacute cutaneous lupus erythematosus causes skin lesions that appear on parts of the body exposed to sun. These lesions do not cause scars.

What is drug-induced lupus?

Drug-induced lupus is caused by certain medicines. The symptoms of drug-induced lupus are like those of SLE, such as joint pain, muscle pain, and fever. But symptoms are usually not as serious. Also, drug-induced lupus rarely affects major organs. Most often, the disease goes away when the medicine is stopped.

The medicines that most commonly cause drug-induced lupus are used to treat other chronic health problems. These include seizures, high blood pressure, or rheumatoid arthritis. But not everyone who takes these medicines will get drug-induced lupus.
 

What is neonatal lupus?

Neonatal lupus is a rare condition in infants that is caused by certain antibodies from the mother. These antibodies can be found in mothers who have lupus. But, if you have lupus, this does not mean you will definitely pass it to your baby. Most infants of mothers with lupus are healthy.

It is also possible for an infant to have neonatal lupus even though the mother does not have lupus currently. But, if a baby is born with lupus, often the mother will develop lupus later in life.

At birth, an infant with neonatal lupus may have a skin rash, liver problems, or low blood cell counts. These symptoms often go away completely after several months and have no lasting effects. Infants with neonatal lupus also can have a rare but serious heart defect.

Who gets lupus?

Anyone can get lupus. It is difficult to know how many people in the United States have lupus, because the symptoms are different for every person. It is estimated that 1.5 million Americans have lupus. Other estimates range from 161,000 to 322,000 Americans with systemic lupus erythematosus (SLE).

About 9 out of 10 diagnoses of lupus are in women ages 15 to 44.

How does lupus affect women?

Lupus is most common in women ages 15 to 44, or during the years they can have children. Having lupus raises your risk of other health problems. Lupus can also make these problems happen earlier in life compared to women who do not have lupus.

These health problems include:

• Heart disease. Lupus raises the risk of the most common type of heart disease, called coronary artery disease (CAD). This is partly because people with lupus have more CAD risk factors, which include high blood pressure, high cholesterol, and type 2 diabetes. Lupus causes inflammation (swelling), which also increases the risk for CAD. Women with lupus may be less ­­active because of fatigue, joint problems, and muscle pain, and this also puts them at risk for heart disease. In one study, women with lupus were 50 times more likely to have chest pain or a heart attack than other women of the same age.
• Osteoporosis. Medicines that treat lupus may cause bone loss. Bone loss can lead to osteoporosis, a condition that causes weak and broken bones. Also, pain and fatigue can keep women with lupus from getting physical activity. Staying active can help prevent bone loss.
• Kidney disease. More than half of all people with lupus have kidney problems, called lupus nephritis. Kidney problems often begin within the first five years after lupus symptoms start to appear. This is one of the more serious complications of lupus. Also, kidney inflammation is not usually painful so you don’t know when it’s happening. That is why it’s important for people with lupus to get regular urine and blood tests for kidney disease. Treatment for lupus nephritis works best if caught early.

How does lupus affect women of color?

African-American women are three times more likely to get lupus than white women.  Lupus is also more common in Hispanic, Asian, and Native American and Alaskan Native women.

African-American and Hispanic women usually get lupus at a younger age and have more severe symptoms, including kidney problems, than women of other groups. African-Americans with lupus also have more problems with seizures, strokes, and dangerous swelling of the heart. Hispanic women with lupus also have more heart problems than women of other groups. Researchers think that genes play a role in how lupus affects minority women.

What causes lupus?

Researchers are still studying possible causes of lupus. We do know that lupus is not a disease you can catch from someone else. Genes play an important role but are not the only reason a person will get lupus. Even someone with one or more of the genes associated with lupus has only a small chance of actually getting the disease. Researchers are studying possible causes such as:

• The environment. Sunlight, stress, smoking, certain medicines, and viruses may trigger symptoms in people who are most likely to get lupus due to their genes.
• Hormones such as estrogen. Lupus is more common in women during their childbearing years when estrogen levels are highest.
• Problems with the immune system.

Lupus diagnosis and treatment

Lupus is a chronic disease with no cure. This means that you can manage it with treatment, but it will not go away. Treatment can help improve your symptoms, prevent flares, and prevent other health problems often caused by lupus. Your treatment will depend on your symptoms and needs.

How is lupus diagnosed?

Lupus can be hard to diagnose because it has many symptoms that are often mistaken for symptoms of other diseases. Many people have lupus for a while before they find out they have it. If you have symptoms of lupus, tell your doctor right away.

No single test can tell if a person has lupus. But your doctor can find out if you have lupus in other ways, including:

• Medical history. Tell your doctor about your symptoms and other problems. Keep track of your symptoms by writing them down when they happen. Also, track how long they last.
• Family history of lupus or other autoimmune diseases. Tell your doctor if lupus or other autoimmune diseases run in your family.
• Complete physical exam. Your doctor will look for rashes and other signs that something is wrong.
• Blood and urine tests. The antinuclear antibody (ANA) test can show if your immune system is more likely to make the autoantibodies of lupus. Most people with lupus test positive for ANA. But, a positive ANA does not always mean you have lupus. If you test positive for ANA, your doctor will likely order more tests for antibodies that are specific to systemic lupus erythematosus (SLE).
• Skin or kidney biopsy. A biopsy is a minor surgery to remove a sample of tissue. The tissue is then viewed under a microscope. Skin and kidney tissue looked at in this way can show signs of an autoimmune disease.

Your doctor may use any or all of these tests to make your diagnosis. They also can help your doctor rule out other diseases that can be confused with lupus.

How is lupus treated?

There is no cure for lupus but treatments can help you feel better and improve your symptoms. Your treatment will depend on your symptoms and needs. The goals of treatment are to:

• Prevent flares
• Treat symptoms when they happen
• Reduce organ damage and other problems

Your treatment might include medicines to:

• Reduce swelling and pain
• Calm your immune system to prevent it from attacking the organs and tissues in your body
• Reduce or prevent damage to the joints
• Reduce or prevent organ damage

What types of medicines treat lupus?

Several different types of medicines treat lupus. Your doctors and nurses may change the medicine they prescribe for your lupus as your symptoms and needs change.

Types of medicines commonly used to treat lupus include:

• Nonsteroidal anti-inflammatory drugs (NSAIDs). Over-the-counter NSAIDs, such as ibuprofen and naproxen, help reduce mild pain and swelling in joints and muscles.
• Corticosteroids. Corticosteroids (prednisone) may help reduce swelling, tenderness, and pain. In high doses, they can calm the immune system. Corticosteroids, sometimes just called “steroids,” come in different forms: pills, a shot, or a cream to apply to the skin. Lupus symptoms usually respond very quickly to these powerful drugs. Once this has happened, your doctor will lower your dose slowly until you no longer need it. The longer a person uses these drugs, the harder it becomes to lower the dose. Stopping this medicine suddenly can harm your body.
• Antimalarial drugs. Medicines that prevent or treat malaria also treat joint pain, skin rashes, fatigue, and lung inflammation. Two common antimalarial medicines are hydroxychloroquine (Plaquenil) and chloroquine phosphate (Aralen). Studies found that taking antimalarial medicine can stop lupus flares and may help people with lupus live longer.
• BLyS-specific inhibitors. These drugs limit the amount of abnormal B cells (cells in the immune system that create antibodies) found in people with lupus. A common type of BLyS-specific inhibitor that treats lupus symptoms, belimumab, blocks the action of a specific protein in the body that is important in immune response.
• Immunosuppressive agents/chemotherapy. These medicines may be used in severe cases of lupus, when lupus affects major organs and other treatments do not work. These medicines can cause serious side effects because they lower the body’s ability to fight off infections.
• Other medicines. You may need other medicines to treat illnesses or diseases that are linked to your lupus — such as high blood pressure or osteoporosis. Many people with lupus are also at risk for blood clots, which can cause a stroke or heart attack. Your doctor may prescribe anticoagulants (“blood thinners”), such as warfarin or heparin, to prevent your blood from clotting too easily. You cannot take warfarin during pregnancy.

Talk to your doctor:

• About any side effects you may have
• If your medicines no longer help your symptoms
• If you have new symptoms
• If you want to become pregnant
• About any vitamins or herbal supplements you take — they might not mix well with medicines you use to treat lupus

Can I treat my lupus with alternative medicine?

Some people with lupus try creams, ointments, fish oil, or supplements they can buy without a prescription. Some people try homeopathy or see a chiropractor to care for their lupus. Some people with lupus who try these types of treatments say that they help.

Research studies have not shown any benefits to these types of treatments. And research studies have not been done to see if these treatments hurt people with lupus.

Talk to your doctor or nurse before trying any alternative medicine. Also, don’t stop or change your prescribed treatment without first talking to your doctor or nurse.

Will I need to see a special doctor for my lupus?

Maybe. Start by seeing your family doctor and a rheumatologist, a doctor who specializes in the diseases of joints and muscles such as lupus. Depending on your symptoms or whether your organs have been hurt by your lupus, you may need to see other types of doctors. These may include nephrologists, who treat kidney problems, and clinical immunologists, who treat immune system disorders.

Can I die from lupus?

Yes, lupus can cause death. But, thanks to new and better treatments, most people with lupus can expect to live long, healthy lives. The leading causes of death in people with lupus are health problems that are related to lupus, such as kidney disease, infections, and heart disease.

Work with your doctor to manage lupus. Take your medicine as your doctor tells you to and make healthy choices, such as not smoking, eating healthy foods, getting regular physical activity, and managing your weight.  

What research is being done on lupus?

Research on lupus focuses on:

• The genes that play a role in lupus and in the immune system
• Ways to change the immune system in people with lupus
• Different symptoms and effects of lupus in different racial and ethnic groups
• Things in the environment that may cause lupus
• The role of hormones in lupus
• Birth control pills and hormone therapy use in women with lupus
• Heart disease in people with lupus
• The causes of nervous system damage in people with lupus
• Treatments for lupus
• Treatments for organ damage caused by lupus, including stem cell transplantation
• Getting a better idea of how many Americans have lupus

Support Groups for Lupus

In the UK

• Lupus UK. Tel: 01708 731251. www.lupusuk.org.uk. Find a support group near you: www.lupusuk.org.uk/regional-group-finder/
• Lupus Trust. Tel: 020 7188 3562. www.lupus.org.uk.
• Hibbs Lupus Trust. Tel: Freefone 0800 633 5118 Monday to Friday from 9 a.m. to 5 p.m. www.hibbslupustrust.org.

In the US

• Lupus Foundation of America: Online resource with a Support Search page for finding support near to you
• Lupus Asain Network. Support for Asian Americans with Lupus

The Lupus Foundation of Northern California (LFNC)
www.lfnc.org
The LFNC provides a variety of services to support and educate the community, particularly lupus patients, their families and the medical community. Visit this informative website and finda a number of services including conferences, books & articles, and other website resources.

The Lupus Program
https://www.ucsfbenioffchildrens.org/clinics/lupus/
The Childhood and Adolescent Lupus Program provides diagnostic and therapeutic services aimed at maximizing the future health of young patients with lupus. The program focuses on optimizing disease control and providing preventative services for some of the common long-term complications that children with lupus face. These services address heart and bone health, transition planning and social support.

UCSF Lupus Clinic
http://www.ucsfhealth.org/clinics/lupus/
The Lupus Clinic focuses on the evaluation and management of systemic lupus erythematosus (SLE), particularly moderate to severe forms of the disease. The clinic has expertise in managing lupus nephritis and other organ-threatening manifestations of SLE. Doctors work closely with dermatologists, nephrologists and other specialists to collaboratively manage all aspects of this complex, systemic disease.

UCSF Lupus Peer Support Group (for ages 15 – 23) – Unavailable until further notice
Join the UCSF peer group and meet other teens and young adults with Lupus. Contact Mariel dela Paz, MSW at (415) 502-2019.

Asian Health Services
http://www.asianhealthservices.org
A comprehensive community health center that provides medical care, health education, insurance counseling, and client advocacy in the underserved Asian and Pacific Islander (API) population in Alameda County.

Finally, for everything Lupus related, this page offers a massive amount of information. SF Lupus Resource