What Is Lupus?

Types of Doctors That Treat Lupus?

Who Gets Lupus?

What Are The Forms of Lupus?

What Are The Causes of Lupus?

What Are The Symptoms of Lupus?

How Is Lupus Diagnosed?

What Are Some Facts About Lupus?

What Are The Treatments For Lupus?

What Are The Common Asked
Questions About Lupus?

 

 




What Is Lupus?
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints and/or organs inside the body). Normally our immune system produces proteins called antibodies that protect the body from foreign substances, like bacteria and viruses. With lupus, your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues and creates auto-antibodies ("auto" means "self") to attack and destroy healthy tissue. These auto-antibodies cause inflammation, pain, and damage in various parts of the body.

 

Lupus is also a disease of inflammation (“flares”)- symptoms worsen and you feel ill and or remissions (“inactive”)- symptoms improve and you feel better.

 

Lupus can ranges from mild to life threatening and should always be treated by a doctor. People with lupus can lead a full life when under a doctor’s care.

 

Types of Doctors That Treat Lupus?
You may need special kinds of doctors to treat the many of your lupus symptoms. Your health care team may include:

  • A family or primary care doctor

  • Rheumatologists—doctors who treat arthritis and other diseases that cause swelling in the joints

  • Clinical immunologists—doctors who treat immune system disorders

  • Nephrologists—doctors who treat kidney disease

  • Hematologists—doctors who treat blood disorders

  • Dermatologists—doctors who treat skin diseases

  • Neurologists—doctors who treat problems with the nervous system

  • Cardiologists—doctors who treat heart and blood vessel problems

  • Endocrinologists—doctors who treat problems related to the glands and hormones

  • Nurses

  • Psychologists

  • Social workers

 

Work with your doctor to develop a treatment plan to fit your needs. 

 

Who Gets Lupus?
Anyone can get lupus:, but it most often affects women. Lupus is estimated to affect 1 to almost 1.6 million Americans, 90 percent of whom are women. African-American women are three times more likely to get lupus than Caucasian women and to suffer worse symptoms. According to the National Institutes of Health (NIH), as many as one in every 250 African-American women has lupus.

 

Latino, Asian, and Native American women have an increased incidence of lupus. In fact, lupus is twice as prevalent among Asian-American and Latino women as it is among Caucasian women.

 

The Centers for Disease Control and Prevention (CDC) reports that death rates from lupus are more than five times higher for women than for men and more than three times higher for African Americans than for Caucasians.

 

What Are The Forms of Lupus?
Systemic lupus erythematosus
 is the most common form of lupus. Systemic lupus can affect any part of your body, and can be mild or severe. Some of the more serious complications involving major organ systems are:

  • inflammation of the kidneys (lupus nephritis)

  • an increase in blood pressure in the lungs (pulmonary hypertension)

  • inflammation of the heart muscle (myocarditis)

  • hardening of the arteries (coronary artery disease)

  • inflammation of the central nervous system (CNS) and brain

  • inflammation of the brain’s blood vessels (neuropsychiatric lupus)

Cutaneous lupus erythematosus is limited to your skin. Although cutaneous lupus can cause many types of rashes and lesions (sores), the most common kind is raised, scaly and red, but not itchy; it is called a discoid rash because the areas of rash are shaped like disks, or circles. Another common example of cutaneous lupus is the rash on the cheeks and across the bridge of the nose, known as the butterfly rash. Hair loss and changes in the pigment, or color, of the skin are also symptoms of cutaneous lupus.

Drug-induced lupus is aprescription drugs can create a lupus-like disease, called. The drugs most commonly connected with drug-induced lupus are hydralazine (used to treat high blood pressure or hypertension), procainamide (used to treat irregular heart rhythms), and isoniazid (a drug used to treat tuberculosis). The lupus-like symptoms usually disappear within six months after the medications are stopped.

Neonatal lupus is a rare condition that affects babies of women who have lupus. At birth, the baby may have a skin rash, liver problems, or low blood cell counts, but all of these symptoms go away completely after several months with no lasting effects. A very small percentage of babies with neonatal lupus may also have a serious heart defect; however, most babies of mothers with lupus are entirely healthy.

 

What Causes Lupus?
The cause of lupus is not known. Research suggests that genes play an important role, but genes alone do not determine who gets lupus. It is likely that many factors trigger the disease.

However, scientists believe that hormones, genetics (heredity), and environment are all involved.

Hormones regulate many of the body’s functions. In particular, the sex hormone estrogen plays a role in lupus. Men and women both produce estrogen, but estrogen production is much greater in females. However, it does not mean that estrogen, or any other hormone for that matter, causes lupus.

While no gene or group of genes has been proven to cause lupus, the disease does appear in certain families. And, although lupus can develop in people with no lupus in their family history, there are likely to be other autoimmune diseases in some family members. Certain ethnic groups (people of African, Asian, Hispanic/Latino, American Indian, or Pacific Island descent) have a greater risk of developing lupus, which may also be related to genes they have in common.

Your genes may increase the chance that you will develop lupus, but scientists believe it takes some kind of environmental trigger to set off the illness or to bring on a flare, such as:

  • ultraviolet rays from the sun or from fluorescent light bulbs

  • sulfa drugs, which make a person more sensitive to the sun

  • penicillin or certain other antibiotic drugs

  • some tetracycline drugs

  • infection

  • a cold or a viral illness

  • exhaustion

  • injury

  • emotional stress

  • anything that causes stress to the body, like surgery, an accident, or pregnancy

Other unrelated factors can trigger your onset of lupus. Scientists have noted some common triggers among many people who have lupus, including exposure to the sun, an infection, a medication taken to treat an illness, being pregnant, and giving birth.

 

What Are The Symptoms of Lupus?
Symptoms of lupus vary, but some of the most common symptoms of lupus are:

  • Pain or swelling in joints

  • Muscle pain

  • Fever with no known cause

  • Red rashes, most often on the face

  • Chest pain when taking a deep breath

  • Hair loss

  • Pale or purple fingers or toes

  • Sensitivity to the sun

  • Swelling in legs or around eyes

  • Mouth ulcers

  • Swollen glands

  • Feeling very tired.

  • Anemia (a decrease in red blood cells)

  • Headaches

  • Dizzy spells

  • Feeling sad/Depression

  • Confusion/Lupus “fog”

  • Seizures

Symptoms may come and go. The times when a person is having symptoms are called flares.  This can range from mild to severe. New symptoms may appear at any time.

 

How Is Lupus Diagnosed?
There is no single test to diagnose lupus. It may take months or years for a doctor to diagnose lupus. Your doctor may use many tools to make a diagnosis:
 

  • Medical history

  • Complete exam

  • Blood tests

  • Skin biopsy (looking at skin samples under a microscope)

  • Kidney biopsy (looking at tissue from your kidney under a microscope)

 

What Are Some Facts About Lupus?

  • Lupus is not contagious.

  • Lupus is not like or related to cancer.

  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome).

  • In the United States alone it is believed that at least 1.5 million people -- women, men, teens, and children -- have lupus. More than 16,000 new cases are reported across the country each year.

  • Lupus strikes mostly women of childbearing age (15-44). However, men, children and teenagers develop lupus, too.

  • Women of color are 2-3 times more likely to develop lupus.

  • People of all races and ethnic groups can develop lupus.

 

What Are The Treatments For Lupus?
Early diagnosis and appropriate treatment can help manage the symptoms of lupus and may lessen the chance of permanent damage to organs or tissue.

Once a lupus diagnosis is established, patients are assessed for damage to major organs (central nervous system, kidneys, heart, or lungs). Treatment depends on the activity and extent of the disease, treatment can range from over the counter pain relievers and anti-inflammatories to prescription medication, therapy, dietary changes, and lifestyle changes such as staying out of the sun, wearing sunblock, and avoiding stress.

Possible Medications for Lupus

  • NSAIDS, nonsteroidal anti-inflammatory drugs, are used to relieve achy joints and arthritis in mild lupus when pain is limited and organs are not affected.

  • Antimalarial drugs, such as hydroxycholorquine, are often prescribed for arthritis or skin problems. 

  • Corticosteroids, such as prednisone, are used for major organ involvement. The dosage prescribed will depend on the type of organ involvement, symptoms, and blood-test results. 

  • Immunosuppressive agents, such as azathioprine (Imuran), methotrexate, cyclophosphamide, cyclosporine, hydroxychloroquine, and mycophenolate mofetil (CellCept), are potent drugs that help control the overactive but misdirected immune system in lupus patients. They help limit damage to major organs and are closely monitored to counter the potentially serious side effects and complications.

What You Can Do 

  • During a flare: get plenty of rest.

  • When lupus is in-active: exercise to increase joint flexibility and muscle strength.

  • Use sunscreen daily that is 30+ which filters both UVA and UVB rays and wear sun-protective clothing, and avoid the sun. 

  • If rashes persist: check with your doctor about using a cortisone cream. 

  • Relieve stress: join support groups, counseling, talking with friends, family, and doctors can be helpful. 

  • For fever over 100 degrees F: call your doctor. 

  • Get regular checkups: these usually include blood and urine tests. 

  • Ask questions: when in doubt, call your doctor. 

  • Report any side effects or new symptoms promptly: help your doctor know when a change in therapy might be needed. 

 

What Are The Common Asked Questions About Lupus?
You are not alone. Here are some of the common questions about lupus:

1. How did I get lupus?
The cause of lupus remains unknown. It is believed that lupus has a genetic pre-disposition and something in the environment triggers the onset of the disease.

2. Is lupus contagious? Can you get it from sex?
Lupus is not contagious. It cannot be transmitted sexually.

3. Is lupus a woman's disease? Do men and children get lupus?
Although lupus is mainly prevalent in women, men can have lupus too. The ratio of women to men is 9 to 1, or 90%. Before puberty, boys and girls have the same ratio; that is 1 to 1.

4. What are the symptoms of lupus?
Common symptoms of lupus are: 

  • Unexplained fever

  • Extreme fatigue

  • Painful or swollen joints

  • Red rash or color change on the face

  • Chest pain upon deep breathing

  • Unusual hair loss

  • Pale or purple fingers or toes from cold or stress (Raynaud's Phenomenon)

  • Sensitivity to the sun

  • Swelling (edema) in legs or around eyes, etc.

  • Swollen glands

These symptoms can come or go, and can range from mild to severe. Most lupus patients have a combination of symptoms.

5. I have a lot of lupus-type symptoms. Where can I go to get diagnosed?
Many hospitals have rheumatology clinics, or your primary care doctor can order specific laboratory tests for lupus.

6. I have all/most of the lupus symptoms, but my ANA is negative. Could I still have lupus?
95% of people diagnosed with lupus have positive ANAs. There are other blood tests more specific to people with lupus that can be used in some instances.

7. Can I have children if I have lupus?
Twenty years ago the answer would have been "no." But today, successful pregnancy and childbirth are possible. It is wise for lupus patients to be in the care of a high-risk ob/gyn.

8. How long can I live with lupus?
Most people with lupus can live a normal life span if they are properly treated, follow their doctor's advice, and lead a healthy lifestyle.

9. Is lupus a progressive disease?
Not necessarily. With proper treatment, lupus is usually manageable.

10. Is lupus hereditary?
Heredity does seem to play a role. Ten percent of lupus patients have a first-degree relative (sister, daughter, son, mother) or a second-degree relative (aunt, uncle, first cousin) with lupus. Therefore, 90 percent of lupus patients DO NOT have relatives with lupus. Even in identical twins, when one sibling has lupus and the other twin does not, it is believed there are environmental factors that play an important role.

11. Do some groups of people get lupus more often than others?
Lupus primarily affects young women, and the disease often starts between the ages of 15 and 44.

People of all ethnicities may get lupus. Lupus is more prevalent in African-American, Latino, Asian, and Native American women than in Caucasian women.

12. Will the prescription drug Plaquenil cause me to lose my eyesight after a while?
No. Have your eyes checked for a "baseline test" prior to Plaquenil use, and twice a year thereafter. If there is a change in your vision, such as blurriness, immediately contact an opthalmologist.

13. I have lupus, but have no money. Where can I get medical help?
City hospitals and most other hospitals can test and treat you on a sliding fee scale. There are also pharmaceutical companies that can help with medicines. These companies are listed under Patient Resources.

14. Where can I get my medications? I don't have enough money to buy them.
Let your physician know that you are unable to purchase your prescriptions. There are organizations that sponsor prescription drug patient assistance programs. Some patients are eligible for Medicaid as well.

15. As a diagnosed lupus patient, am I eligible for disability?
If your physician believes you are unable to do any "substantial gainful employment," due to physical, mental, or emotional illness, then you may be eligible for disability. You also will have to have worked for a required amount of time in the last 10 years since diagnosis. The process to receive disability is long and stressful and may result in your contacting an attorney who specializes in disability.

16. I have SSD (Social Security Disability), but I think I could go back to work. Will I lose my benefits and my Medicare?
No. SSD allows you a nine-month trial work period where there is no limit as to income earned. This trial period is not necessarily nine consecutive months. There is hope that Medicare will be continued after this trial period.

17. Is there a special diet for people with lupus?
No. However, eating plenty of fresh fruits and vegetables, eating chicken and fish over red meat, and drinking plenty of water are all highly recommended.

18. Is it safe for me to take vitamins, herbal supplements or try alternative treatment?
Before introducing any vitamins, herbal supplements or trying alternative treatment, please consult your doctors.