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Living With Lupus

Racquel

Actual patient
receiving BENLYSTA

In a clinical study in Black patients, a reduction in disease activity was seen but was not statistically significant. Consult your healthcare provider to see if BENLYSTA is right for you.

Lupus can be difficult to diagnose. And once it’s diagnosed, lupus can be life-changing. Discover how you can cope better with lupus by learning to understand the disease, the symptoms, and the impact lupus has on the body.

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What is Lupus? 

 

Lupus is a chronic auto-immune disease that involves your immune system.

 

Your immune system is like a bodyguard against invaders, such as viruses, bacteria, and other germs. Normally, your immune system works to fight off these invaders. But in the case of lupus, the immune system mistakenly attacks your own body’s healthy tissues.

 

Inflammation caused by lupus can affect many different body systems, including your joints, skin, kidneys, blood cells, brain, heart, and lungs.

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Lupus and the Immune System

 

The following terms may help you better understand lupus and how it can affect the immune system.

 

Normal Immune System: A normal immune system produces B cells, which make antibodies that destroy and control harmful substances, such as viruses, bacteria, and germs.

 

Normal B Cell: This type of white blood cell produces antibodies.

 

Antibody: Antibodies attach themselves to germs and try to control or destroy them.

 

BLyS: B Lymphocyte Stimulator (BLyS) is a protein that helps some cells grow healthy body tissue.

 

Germs: Viruses, bacteria, and other invaders.

 

Abnormal Immune System: With lupus, the immune system produces autoreactive B cells, which make a type of protein called autoantibodies. These autoantibodies attack your own body, leading to inflammation.

 

Autoantibody: While antibodies protect the body, autoantibodies work against the body.

 

Autoreactive B Cell: These are the “bad” version of B cells that make harmful autoantibodies.

 

Inflamed Body Tissue: A sign of lupus disease activity.

 

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Here, you can see how a healthy immune system attacks invaders, such as germs. In the case of lupus, autoantibodies attack healthy tissues, leading to inflammation.

Diagram: Normal Immune System
Diagram: abnormal Immune System

What Are the Most Common Symptoms of Lupus? 

Since SLE can affect many different parts of the body, it can cause a lot of different symptoms and these symptoms may come and go. Also, symptoms may vary between one patient to the next. Talk to your doctor if you have any questions about your condition. The most common signs and symptoms of lupus include (this list is not all-inclusive)*:

  • Fatigue
  • Fever
  • Joint pain
  • Stiffness and swelling
  • Butterfly-shaped rash on the cheeks and bridge of the nose or rashes elsewhere on the body
  • Sun sensitivity
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches
  • Confusion and memory loss

* BENLYSTA may not help with all these symptoms. Consult your healthcare provider to see if BENLYSTA is right for you.

What is lupus?

Learn more about lupus and its symptoms from rheumatologist Dr. Elaine Lambert.

TRANSCRIPT

Dr. Lambert: Our immune system plays an important role in protecting us from infection. Lupus is a disease that results from abnormal activity in the immune system. To understand lupus, it’s helpful to first have an understanding of certain parts of the immune system known as white blood cells, B cells, and antibodies. White blood cells are cells in the blood stream that recognize and help destroy germs such as viruses and bacteria that cause infections. B cells are a specific type of white blood cells that produce antibodies, and antibodies are a type of protein that attach to the surface of germs. This attachment marks the germ as a foreign invader, and this is a key step in the destruction and removal of germs from the body. In people with lupus, certain B cells become autoreactive. What that means is these B cells release a type of antibody that attaches to healthy tissues instead of attaching to germs. When this happens, the immune system attacks the healthy tissue. This immune system attack on healthy tissue can lead to disease activity in lupus.

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Who Can Get Lupus?

 

Roughly 5 million people worldwide have some form of lupus.

 

Nine out of 10 adults with lupus are women, and women of childbearing age are most likely to develop the disease.

 

Women of color are also more likely to develop lupus compared to Caucasian women.

 

Lupus can be isolating. It is important to have people in your life whom you can count on through the ups and downs of your condition.

 

Build a support network  

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How Do You Get Lupus?

 

The causes of lupus are not fully understood, though we know that lupus is not contagious. Scientists believe there are several factors that may cause a person to develop lupus, such as:

 

Genetics. Several genes that may cause lupus have been identified. It is known that if there is a family history of lupus, this may predispose a person to developing the disease.

 

Environment. Scientists are looking at the link between lupus and certain environmental factors, such as UV exposure, stress, viruses, and toxins.

 

Hormones. Because lupus affects a greater number of women than men, it is thought that hormones, particularly estrogen, might play a role in triggering the disease.

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Lupus affects everyone differently

Learn about lupus from real BENLYSTA patients: Michelle, Morgan, and Susan.

TRANSCRIPT

Michelle: My personality is definitely one of being a perfectionist. Anyone that knows me – my husband, my children – they know I like to dot the “i’s” and cross the “t’s”.

Morgan: As a child, you could find me in the water with my yellow lab, Chelsea. I guess you’d say I was your typical tomboy.

Susan: After seeing The Nutcracker for the first time, dance was one of my passions. Like, once the music started playing, everything else melted away.

Michelle: I grew up watching my mother fight lupus and as I became a young adult, I became her caregiver and that sort of instilled in me a fear, and a denial that there was no way I ever was going to have lupus. I was going to do everything possible – not that there’s anything you can do to prevent lupus. Even when I started having symptoms, I hid them from everyone …even my family.

Morgan: I didn’t tell anyone for years. My mom thought I was imagining it. In many ways getting the diagnosis was a huge relief. I did some research and found out that lupus is a chronic disease, with no cure. I decided, at that point, that I wasn’t going to be labeled by my lupus. I was going to fight it.

Susan: I guess I started having symptoms before my son was born, but I didn’t get the official diagnosis until my early 30s when he was about 2 years old. It was a very difficult time for me.

Michelle: I think it’s difficult for people to understand what people with lupus really experience. They look at them on the surface and they say: “They’re okay. They look fine.” I was able to finally take a deep breath and stop with the façade that everything was okay. So, when I finally – with the help of my rheumatologist – had that diagnosis, and said: “we need to go from here. We need to involve your family, your friends.

Dr Lambert: Lupus affects everyone differently. The symptoms are wide-ranging and can change over time. So, the clinical course of someone with lupus often is unpredictable. In some people, the first symptoms may resemble an infection. In others, lupus begins as a series of vague, seemingly unrelated symptoms that may progress over several years. Because of the great variability, a thorough medical examination by a healthcare professional familiar with lupus, typically a rheumatologist, is often required to make an accurate diagnosis.

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Want to learn more about BENLYSTA, a treatment designed for lupus?

As you and your doctor consider BENLYSTA, it’s natural to have questions. To learn more about how BENLYSTA works, understand the financial help we offer, hear from others like you, and more, request our free BENLYSTA Information Kit.

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Erica
Actual patient
receiving BENLYSTA

There are a variety of support materials about lupus that may help you find the information you need.

What Kind of Medicine is BENLYSTA?

 

BENLYSTA (belimumab) is a biologic therapy, not a steroid. It is taken in addition to your other lupus medications and is available in three options:

  • an autoinjector you self-inject, for adults
  • a prefilled syringe you self-inject, for adults
  • an intravenous (IV) infusion a healthcare provider administers, for adults and children ages 5 and above

 

Learn more about BENLYSTA

Frequently Asked Questions

  • Is lupus contagious?

    Lupus is not a contagious disease. The causes of lupus are not completely understood; however, it is believed the following play a role:

     

    Genetics. Several genes have been identified as possibly causing lupus. 

     

    Family history. It has been established that, if there is a family history of lupus, this may predispose a person to developing the disease.

     

    Environment. Scientists are looking at the link between lupus and certain environmental factors, such as UV exposure, stress, viruses, and toxins.

     

    Hormones. It is thought that hormones, particularly estrogen, might play a role in triggering the disease. 

     

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  • How long will I need to take BENLYSTA?

    You and your healthcare provider are the best people to determine how long you should receive BENLYSTA. BENLYSTA may take time to work in the body.

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See the BENLYSTA experience from their perspective

Real BENLYSTA patients share their experiences living with lupus and tips for starting BENLYSTA treatment.

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Looking for a physician?

If you are looking to find a lupus physician to help you or a loved one take the next step with BENLYSTA, we are here to help. FIND A PHYSICIAN NEAR YOU