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Understanding Your Symptoms

Systemic lupus erythematosus (SLE or lupus) can affect any organ in the body and may cause a wide range of symptoms.

A Complicated, Unpredictable Disease

What's more, SLE symptoms can vary from person to person—and change over time, even within the same person. That’s why it’s so important for people with lupus to monitor their symptoms, even when they may seem minor, temporary, or unrelated to their other symptoms.

Over time, SLE can even lead to organ damage. It’s important that you understand your symptoms and share them with your healthcare team, because they could be signs that organ damage is occurring.

Common Lupus Symptoms

Some of the most common lupus symptoms are:

  • Extreme fatigue that doesn't go away with rest
  • Joint pain, stiffness, and swelling in two or more joints
  • Fever over 100°F
  • Muscle pain
  • Hair loss
  • Skin sores and rashes (which may occur in a butterfly-shaped pattern across the cheeks and nose)
  • Nose or mouth sores (usually painless)
  • Skin rashes after sun exposure

Keep a careful eye on your symptoms. Do they change over time? How are they affecting your daily life? Do they prevent you from doing things that you enjoy? Does lupus make you feel isolated, depressed, or frustrated? These are all important factors to share with your doctor.

Bridging the Communication Gap

One of the challenges in managing lupus is the lack of communication between patients, caregivers and families. In 2011, GfK Roper North America conducted a survey of 957 members of the lupus community, including patients, family members or friends, and rheumatologists.*

The survey revealed a serious gap between what patients are really feeling and what they're willing to share with others, including their rheumatologists. This, in turn, could result in certain symptoms being underreported.

Remember, the first step in taking control of lupus is sharing all your symptoms with your healthcare team and with your loved ones. It's the best way to ensure you get the support you need.

Download the Complete Survey

* Data from the 2011 National Burden of Lupus survey funded and developed by Human Genome Sciences and GlaxoSmithKline. This survey included 957 people in the lupus community—502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists. Data on file, GlaxoSmithKline, 2011.

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