Your immune system protects your body against bacteria and viruses that can make you sick. Unfortunately, this important system can have problems of its own, when the immune system attacks your body, leading to infections or illnesses. One such autoimmune disease is called lupus.
According to the Lupus Foundation of America, 63% of Americans between the ages of 18 and 34 have not heard of lupus or know very little beyond the name. Considering this age group is at the greatest risk of developing the disease, it’s important to know what it is.
Sarah Blankenheimer, FNP, is a nurse practitioner focused on rheumatology at Banner - University Medicine Rheumatology Clinic in Phoenix, AZ. She helps patients cope with the challenges of lupus and shared her insight on the disease.
What is lupus disease?
Lupus is an autoimmune disease. This means the body’s own immune system begins to attack itself. This can cause inflammation of different organs in the body. In the U.S., experts believe it affects roughly 1.5 million people and at least 5 million people worldwide.
There are several types of lupus. Systemic lupus erythematosus, (SLE or lupus) is the most common type of the disease. Other types include cutaneous lupus erythematosus (like discoid lupus), drug-induced lupus and neonatal lupus.
“Signs and symptoms can be highly variable,” noted Blankenheimer. You may be experiencing some or all of the associated symptoms and the severity can vary based on the development of the disease. Common symptoms of systemic lupus erythematosus include:
- Rashes on the patient’s nose and cheeks
- Hair loss
- Chest pains
- Joint pains or stiffness
- Urine that looks brown or foamy
- In more severe cases of lupus, symptoms may include blood clots, kidney problems, heart and lung problems, and more
Who gets lupus?
It can be hard to predict who will get lupus, but a few common risk factors can help doctors identify people more likely to developing the disease.
Family history is one of the most common risk factors. It is seen more often in people with a family history of autoimmune disease. Blankenheimer commented that “if you have a first degree relative with lupus, the best thing you can do is monitor for any new or concerning symptoms in yourself. Speak with your primary care provider if you have any questions. They may refer you to a rheumatologist for further evaluation.”
Gender and ethnicity also play significant roles in who gets the disease. The Centers for Disease Control and Prevention’s statistics show that 9 out of 10 (90%) newly diagnosed lupus patients are women between the ages of 15 and 44. The Lupus Foundation also notes it is more prevalent in women of color. In fact, African American, Hispanic/Latina, Asian America, Native American, Alaska Native, Native Hawaiian and other Pacific Islander women are two to three times more likely to develop lupus.
How lupus can affect your body
Symptoms can vary greatly from one case to another. For many people with lupus, a mostly normal life is within reach. Although there is no cure, new treatments are constantly lessening the day-to-day effects of the disease. Treatments are designed to decrease the effects of lupus on the parts of the body. So, working with your doctor to create a plan for care that will improve your quality of life and outlook in general is important.
The most common effects of lupus include extreme fatigue, joint pain, fevers and skin rashes. About half of people with the disease develop a butterfly shaped rash across their cheeks and nose. The rash can also appear in other places and often worsens with sun exposure. About 50%-90% of people identify fatigue as a primary symptom, thus proper rest is very important.
Rheumatoid arthritis is another common way that lupus affects the body. Arthritis is a swelling of the joints, which leads to stiffness and aching. These symptoms may come and go based on the severity of your condition and other factors such as activity, diet and more.
In cases where the disease has developed significantly, the effects can be more severe. Chronic inflammation from lupus can lead to early onset of heart attacks and other cardiovascular diseases. Kidney disease developed from lupus can lead to kidney failure, which could require dialysis. The Lupus Foundation of America states 65% of people living with lupus say “chronic pain is the most difficult aspect” of the disease.
While lupus may not directly lead to someone getting another disease, some other conditions can be more likely. People with lupus are at increased risk of:
- Sjogren’s syndrome
- Antiphospholipid syndrome
- Other autoimmune diseases
“Especially in more severe cases, early diagnosis and treatment can be organ-saving or even life-saving,” said Blankenheimer. Early diagnosis is important but is often challenging since symptoms can be very vague and nonspecific. Your doctor will look for symptoms and may run blood tests to get a proper diagnosis.
Lupus is often called the “great imitator” because its symptoms are similar to many other illnesses. Studies have shown that on average, it takes nearly six years for people with lupus to be diagnosed, from the time they first notice symptoms. A rheumatologist can be helpful in diagnosing and distinguishing between the various types.
How to treat lupus
Although there is no cure, treatment is key to improving your odds and enjoying a normal lifespan. Blankenheimer added, “Typically, the first 6-12 months after the diagnosis will be the most challenging while we find the most effective medication. Once we find the treatment plan that works best for the patient, we can go into ‘maintenance mode’ and try to prevent future reactivation of the disease.”
Among the medications your doctor may recommend are anti-inflammatory agents, hydroxychloroquine or chloroquine, different immunosuppressive agents and glucocorticoids, such as steroids.
Improving your quality of life
Smoking is known to intensify symptoms no matter what your illness, and lupus is no different. Smoking can make some of the disease’s symptoms worse and can decrease your response to medicines typically used to treat it. Blankenheimer emphasized, “If you’re a smoker, it may be very helpful to quit.”
Excessive sun exposure may also make the disease’s symptoms worse, so you should use sunscreen regularly. In addition, Blankenheimer listed proper diet and exercise as powerful ways to decrease the severity of your symptoms.
These healthy habits can’t prevent lupus or cure it. But they can make life with it more comfortable.
Supporting a loved one with lupus
If your spouse, parent, child or loved one has recently been diagnosed, “the best way to support them is with patience and understanding,” said Blankenheimer. “They will have good and bad days and improvement is not always consistent.”
You may be relied on for trips to doctors and for support throughout treatment. Because diagnosis can sometimes take a while, patience and steadiness during the discovery process is vital. Chronic pain is a reality for many people with lupus. A normal life may still be within reach and your support through hard times will be an important lifeline.
If you have questions about your risk for developing lupus or to discuss potential symptoms, visit your health care provider or find one near you at bannerhealth.com.
Learn more by reading these related articles written with the help of other Banner Health experts.