Everything You Need to Know About Lupus

Systemic Lupus Erythematosus Infographic | All About Lupus SLE

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What is Lupus?

Lupus is a group of autoimmune diseases which are a chronic, life-long inflammatory disorder where the immune system attacks it's own organs and cells. All forms of lupus can cause pain and inflammation and as of yet there is no known cure. 

Approximately 1.5 million Americans and 5 million people worldwide are living with lupus. 

Different Types of Lupus

  • Systemic Lupus Erythematosus (SLE)
  • Cutaneous Lupus Erythematosus (including Discoid Lupus)
  • Drug Induced Lupus
  • Neonatal Lupus (a very rare form of lupus only found in newborns)

Systemic lupus (SLE) is the most serious and most common form of lupus and SLE can affect any part of your body including but not limited to the joints, kidneys, heart, lungs, brain, skin and blood cells.

Who is Affected by Lupus?

90% of people with lupus are women, with just 10% of people with lupus being men. Scientists are not quite sure why women are disproportionately affected by autoimmune diseases but they suspect there may be a hormonal component. 

While men are less likely to get lupus, if they are diagnosed they tend to have more progressive and severe symptoms than their female counterparts do. 

People of color are much more likely to develop all forms of lupus and African Americans, Asians, Latinos & other minorities making up approximately 65% of all lupus patients. Like men, people of color are more likely to experience severe symptoms and organ involvement. 

Most Common Lupus Symptoms

Systemic lupus can cause a long list of symptoms, many of which can be caused by other diseases, making it tough to narrow down and diagnose lupus. Some of the most common SLE symptoms include, but are not limited to: 

  • Joint pain and inflammation 
  • Mouth and nose ulcers (sores)
  • Debilitating fatigue
  • Skin lesions and rashes
  • Malar (butterfly) facial rash
  • Chronic low grade fevers 
  • Photosensitivity (sun allergy)
  • Headaches
  • Fingers and/or toes turning white, purple or blue 
  • Chronic low blood cell counts (WBC, RBC and/or platelets) 

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Life Expectancy for Systemic Lupus (SLE)

Lupus treatments have come a long way in the last few decades and lupus fatality rates have dropped dramatically as a result. 80%+ of lupus patients will live a normal lifespan and as science continues to improve and more medications are introduced to manage lupus, we can expect the life expectancy to increase even further. 

Diagnosing Lupus 

There is no one test to diagnose lupus often making an SLE diagnosis quite difficult. When lupus (or other autoimmune disease(s)) is suspected, your rheumatologist is going to run a laundry list of bloodwork to help narrow down which autoimmune disease(s) you have. They will also take an oral history of your symptoms and review any previous bloodwork and imaging you've had in the past. Some rheumatologists may also do imaging such as x-rays on hands, feet, knees or other joints to check for signs of lupus, rule out rheumatoid arthritis and check for any damage overall. 

Many autoimmune diseases have a large symptom crossover with other autoimmune diseases and Sjögren's Syndrome and Rheumatoid Arthritis can have very similar symptoms to Systemic Lupus so your rheumatologist will likely test for antibodies for multiple autoimmune diseases to make sure you receive the most accurate diagnosis. 

Some of the tests your rheumatologist might order include: 

  • Anti-nuclear antibodies (ANA) (Anti-nuclear antibodies can associated with numerous autoimmune diseases and even in a small percentage of the population who do not have any autoimmune diseases)
  • Anti-dsDNA
  • Anti-ro (SSA) and Anti-la (SSB) antibodies (these are seen in both Lupus & Sjogren's Syndrome patients)
  • Rheumatoid Factor (RF factor) (This is to rule out Rheumatoid Arthritis)
  • Anticardiolipin antibodies (Lupus anticoagulant) 
  • C3 & C4 Complement
  • SED Rate (Erythrocyte sedimentation rate)
  • C-reactive protein 
  • Complete blood count (CBC) 
  • Comprehension metabolic panel
  • Urinalysis 
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When making a lupus diagnosis, your rheumatologist will account for any abnormal blood test results, overall symptoms and medical history and any organ involvement to make the determination of lupus. 

What to Expect After Your Lupus Diagnosis

Getting a lupus diagnosis can feel so scary but if you find yourself hearing those dreaded words, "You have lupus", don't panic, it's going to be okay. It can be helpful to join some support groups where you can talk to other people with lupus and get support from other people who understand what your diagnosis means. 

The current standard of care for the treatment of lupus is Plaquenil (generic name: Hydroxychloroquine). Most people will be put on hydroxychloroquine to start and your rheumatologist may also decide to add a round of Prednisone (a steroid) to help reduce any active inflammation. Hydroxychloroquine is known to protect organs from further damage and is even safe to take during pregnancy. 

Lupus Comorbidities

What is a comorbidity?

A comorbidity is when a person has two or more long-term chronic illnesses at the same time. Unfortunately lupus has quite a few common comorbidities (often autoimmune) including but not limited to Sjögren's Syndrome, Rheumatoid Arthritis, Hashimoto's Thyroiditis, Fibromyalgia, Raynaud's Phenomenon, Antiphospholipid Syndrome, Cardiovascular Disease, Type 1 & 2 Diabetes, Irritable Bowel Syndrome (IBS) and more. 

Systemic lupus is also associated with a higher risk of certain cancers, especially lymphoma. 

Lupus FAQ's:

What causes lupus? 

It's not 100% know what causes lupus however there is a genetic component as lupus can often run in families.

What are some triggers that can cause a lupus flare?

Many people with lupus find that stress and the sun are two really big flare triggers. When going out in the sun, be sure to wear sunscreen, a large brimmed hat and long sleeves, especially shirts with UV protection. It also helps to avoid the sun during the hottest part of the day and checking the UV index before venturing outside. It's best to stay inside if possible when the UV index is high. 

You can check your current UV index, here

When is Lupus Awareness Month?

Every year Lupus Awareness Month is held during May, with May 10th being designated as World Lupus Day. Lupus Awareness Month is designed to help bring better awareness to what Lupus is and what its like to live with this disease. 

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