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Medical Conditions

Lupus erythematosus

Synonyms: Discoid lupus, SLE, Subacute cutaneous lupus, Systemic lupus erythematosus

Overview

The immune system is designed to attack foreign substances in the body. If you have lupus, something goes wrong with your immune system and it attacks healthy cells and tissues.

There are many kinds of lupus. The most common type, systemic lupus erythematosus, affects many parts of the body.

Anyone can get lupus, but it most often affects women. Lupus is also more common in women of African American, Hispanic, Asian, and Native American descent than in Caucasian women.

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.

www.ninds.nih.gov/disorders

Symptoms

Symptom
Frequency
Skin rash
Joint pain
General pain
Fatigue
Headache
Chest pain
Shortness of breath
Knee pain
Back pain
Nausea
Show more symptoms
Cough
Fever
Skin lesion
Abdominal pain
Shoulder pain
Hand pain
Convulsions
Dizziness
Foot pain
Hip pain
Vomiting
Discolored skin

Demographics

Age Distribution

The average age of someone with Lupus erythematosus is 42.

Gender Distribution

Lupus erythematosus is significantly more common among females.

Geographic Distribution

Prevalence is higher in the West.

Note that above data is by region (Northeast, South, Midwest, West) and not by state.

Risk Factors

Racial/Ethnic Distribution

Prevalence is significantly higher among African Americans, Asians, Hawaiians and people of other race.

Stories

In order to know a condition, you have to know the stories of the people living with it. That's why we asked people, “What is it like?” This is what they had to say.

Patti

Patti Eggleston was a full-time college student finishing her fall semester back in 1976. It was a busy period of her life — not only was Patti in the middle of final exams, but she had a husband and an active three-year-old to care for. On top of all this she was suffering from nausea, fever, headache and extreme body pain.

Read Patti's Story

Patti went to the university health clinic for help. “After listening to my symptoms, the doctor told me his diagnosis, ‘It sounds like the later stages of gonorrhea,’” Patti remembers him saying. “I replied, ‘Interesting. My husband’s been my only partner and he doesn’t have it.’”

It would take another four years of dealing with symptoms like body aches, fever and episodes of ‘brain fog’ before Eggleston would finally get a diagnosis of systemic lupus erythematosus.

Considered an autoimmune disease, lupus is a condition where a person’s immune system attacks his or her own tissues and cells. In a healthy individual, the immune system attacks foreign invaders like bacteria and viruses. Why the body’s immune system turns against itself in lupus patients is still unknown.

Today Patti is an educator and athlete: she’s an Assistant Special Education Director at the Wenatchee School in Washington who swims three mornings a week starting at 4:45 am plus strength training and cycling on the other two.

But Patti vividly recalls the day in 1980, four years after her symptoms began, when she finally got a diagnosis. She was 25 and had gone to the bank to make a deposit at the drive-up window. “Despite all of my effort, I could not open that plastic tube — it was just too painful. Immediately, I drove to the walk-in clinic down the street.”

The clinic doctor listened to her symptoms and promptly scheduled Patti to see a rheumatologist later that day. The specialist put her on an aspirin regimen and ran lab tests on her blood and urine. Within a week, Patti was back in the rheumatologist’s office facing the lab results, which determined that she had lupus.

“ When I was first diagnosed, I felt sad and alone. I knew nothing about lupus and neither did my support system. ”

“When I was first diagnosed, I felt sad and alone. I knew nothing about lupus and neither did my support system,” Eggleston recalls. “I told my rheumatologist that I needed to educate myself on lupus and learn to cope with it to the best of my ability.” Her rheumatologist recommended a doctor at UCLA who had experience treating several other lupus patients and encouraged her to join the Pacific Northwest Chapter of the Lupus Society (now Foundation). Not only did Patti join but she also started the Greater Wenatchee support group.

It’s common for people with lupus to experience a range of symptoms affecting different parts of the body with joint inflammation, skin rashes, nausea, fatigue, ‘brain fog’ and kidney problems, as the most typical ones. There is no cure for lupus and the medications, many of which suppress the immune system, can be difficult to endure; prednisone and other steroids are notorious for increasing one’s susceptibility to side infections.

“The day of my diagnosis, due to kidney and severe joint pain, I began taking prednisone, imuran and plaquenil.” A few years ago, Patti developed an allergic reaction to the plaquenil and stopped that part of her treatment. And after being on prednisone for over 28 years, she discontinued that steroid and added lisinopril and crestor, two medications that are typically prescribed for cholesterol patients but that also can be used effectively to support kidney function.

“In the beginning, living with lupus was of course an adjustment. But once I met with Dr. Hahn at UCLA, that began my journey of ‘attitude and gratitude’,” says Eggleston, referring to the more positive approach that she adopted over time as she continued to learn more about her autoimmune disease.

Living with lupus “has forced me to reflect on everything in my life including my belief system, personal goals, exercise and eating habits,” Patti explains. “I celebrate the little things in life.”

While living with lupus can be a challenge, it’s a challenge that she’s managing. “I have lupus but lupus doesn’t have me,” she proclaims. “First thing in the morning, when my feet hit the floor and the pain shoots through my body, I take a mental note of what hurts, what my schedule is for the day and what attitude I will take to get through it. I push through routines and daily rituals. I have never used it as an excuse for not doing something.”

Patti wants people to know that lupus and other chronic diseases are often an inconvenience but not necessarily something to pity. And she is happy to share her experience with those who are curious. “Please, talk to me, I’d love to enlighten you about lupus,” says Eggleston.

Story written by Jane Heisey

Saundra

Saundra was 28 and experiencing random joint pain that moved throughout different parts of her body each day. She started to keep a journal of her symptoms because they were so unpredictable. One day it was pain in her left knee, the next day, her right wrist, elbow or a single finger on her hand.

Read Saundra's Story

“I lived with this for six months, wrapping areas that I could with ace bandages, taking Tylenol and moving on,” Saundra recalls. “Then the migraines started. That was significant for me because I could no longer pretend that nothing was wrong — I couldn’t function.”

Saundra was experiencing migraines two to three times per week so her doctor prescribed medication that helped with the pain but that also made her extremely tired. “I had a husband, a 7-year old child and a demanding job. I couldn’t spend two to three days sleeping. I had a family to take care of and a job to do.” Sometimes after taking her migraine pills at work, she was unable to drive home and would sleep beside her desk.

In an effort to focus on her family and work, Saundra did everything she could to ease her symptoms. To help with the joint pain, she would soak in scalding hot water, but still needed help getting out of the tub because her body wasn’t responding.

“I remember one time, I was crying in the tub because I knew that this couldn’t continue. I called my doctor and she referred me to a rheumatologist.” Saundra immediately called to schedule an appointment only to be told that the specialist was booked until the following month. “I told the receptionist that I would be dead in a month. I just knew that my body was shutting down.” After holding for a few minutes, the rheumatologist’s office returned and told Saundra that she could be seen that week.

That was the turning point and the call that likely saved her life. Saundra learned from her rheumatologist that her kidneys were failing and that there was significant inflammation in her brain, hence causing her intense migraines. At 28, Saundra was diagnosed with systemic lupus erythematosus, the most common form of lupus.

“Living with lupus for me is living on a physical, emotional and financial roller coaster,” admits Saundra. “I never know how I am going to feel, but I still make plans each day and TRY to live my life to the fullest. But always in the back of my mind, I wonder ….will I be around when my son gets married? See my first grandchild? Will my husband ever be able to retire?”

“ I have to write everything down... including where I parked! I struggle to find words when I am trying to describe something. ”

Like many with lupus, Saundra has those days where even simple tasks are too painful to undertake — like opening a jar or lifting a pan up to the counter. But she feels that the biggest impact that the disease has affected her daily routine is mental and not physical. “It has had such an adverse effect on my memory, reasoning and comprehension,” she explains. “I have to write everything down….including where I parked! I struggle to find words when I am trying to describe something.”

Reading through contracts is part of her responsibility at work and sometimes Saundra struggles with the ‘brain fog’ that many lupus sufferers describe. “I can see the words, read the words but not understand what I read. I even find myself struggling for words during conversations and the result is that I’m becoming less and less social. When I have to speak publicly for work or on behalf of my organizations, I find myself having anxiety attacks.”

Saundra painfully acknowledges the toll that lupus has taken on her family. Her son was just seven years old when she was diagnosed and Saundra worked hard to make sure that he lived a normal, happy childhood, not missing his school events or activities regardless of how she felt. “I didn’t want his memory of me to be the lupus.”

She thought she had succeeded until recently, when having a conversation with her son, now 27 — he described his childhood as tough. Tough? Saundra was in disbelief. “I asked him how in the world his childhood had been tough and he said that since he was 7, he’s lived every day knowing that his mom could die because of lupus.” It broke her heart. “Instead of having an open conversation about lupus,” Saundra reflects, “I tried to shelter him and instead of protecting him, it just added to the fear.”

And then there’s the financial side of having a serious illness. Saundra’s employer does not offer health insurance so she is covered under her husband’s plan — but at a significant cost. Every month, nearly $900 comes out of his paycheck just for her portion of the insurance, which doesn’t include co-pays, deductibles or prescriptions.

So what does Saundra want people to know about lupus?

“You don’t always look sick when you have lupus.” Once when she was picking up her medication, she parked in the handicapped spot with the designated placard hanging from her rearview mirror. A man verbally accosted her for parking there because she didn’t appear to be sick.

Lupus is a disease with a host of symptoms that affect each patient individually. Currently there is no cure — only managing the ailments as they appear each day. Saundra’s mother taught her at a young age that each day is a new day and to be grateful for it. And that’s the way she’ll start her day, lupus or not.

Story written by Jane Heisey

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All the data above are calculated from anonymized medical records.

Bars in this color represent statistically significant associations.