Living with Systemic Lupus Erythematosus

When people refer to “lupus,” they refer to the most common form, systemic lupus erythematosus (SLE). SLE is an autoimmune disease that causes the body to attack its tissues, causing widespread inflammation. Tissue damage in the affected organs is the result. It can affect joints, skin, brain, lungs, kidneys, and blood vessels and can be mild to severe. SLE has no cure, but lifestyle changes and available treatments can make living with it more manageable.

SLE Symptoms

Lupus crossword symptom puzzle, research

Lupus can cause a lot of different symptoms because it can affect several parts of the body. Typically they happen in flares where you have symptoms for a while and then a period of remission. There are short and long term complications lupus can have on a person’s life. It can limit the physical, mental, and social functioning of those living with it. The most common signs are:

  • Feeling tired all the time
  • Pain or swelling in the joints
  • Swelling in the hands, feet, or around the eyes
  • Headaches
  • Low fevers
  • Sensitivity to sunlight or artificial light
  • Pain in chest when breathing deeply

If the skin and hair are affected, symptoms may also include sores in the mouth and nose, butterfly-shaped rash on cheeks and nose, and hair loss. Fingers and toes that turn white or blue and feel numb are other signs if they are cold or stressed.  

Diagnosing and Treating SLE

No single test exists that can definitively diagnose SLE. Instead, a combination of medical history, blood, urine, and other lab tests are done. Lupus is often misdiagnosed or missed altogether initially. Once diagnosed, managing SLE consists of controlling symptoms, stopping your immune system from attacking your body, and protecting your organs from damage. Often, this requires a multi-disciplinary approach with specialists working together to cover all areas of the body impacted. The medications commonly used aim to calm the immune system and control pain and swelling. Symptoms from other related conditions are also rolled into the plan.

A Partnership Between Researchers and Patients

Research studies are being conducted that are looking into potential new ways to manage this disease. As a patient with lupus, you are an expert on your condition and how it’s impacted your life. Your insight can help researchers gain an understanding so that better treatments can be designed. If you’ve been diagnosed with systemic lupus erythematosus, clinical research studies may be an option.

Shark fin above water, big shark under, lupus research

To learn more about enrolling in lupus studies here at ForCare, call (813) 264-2155, or visit our website.