It can be overwhelming to receive a medical diagnosis, particularly one like lupus, but learning about your diagnosis and ways to cope with it can make it more manageable.
Lupus is an autoimmune condition where the immune system mistakenly attacks its own healthy body cells, causing damage. In lupus, the most commonly affected areas of the body include the skin, joints, kidneys, heart, brain, and tissue lining the lungs. Most patients experience varying times of disease inactivity known as “remissions”, and periods when symptoms are present, called “flares” or “flare-ups.” Flares can range from mild to severe and differ per person and stage of the condition. The cause of lupus isn’t clear, but it does affect more women than men.
Lupus comes in a few different forms. Systemic lupus erythematosus, or “SLE,” is the most common form, and the general term “lupus” usually refers to this type. SLE affects many different organ systems in the body, especially the kidneys, joints, and skin. This form of lupus can also affect the cardiovascular system and the nervous system.
Chronic cutaneous lupus erythematosus, or CCLE, is a form of lupus limited only to the skin. It can also be referred to as “discoid lupus erythematosus.” Five percent of people with CCLE may go on to develop SLE later in life.
Two other forms of lupus exist – neonatal lupus erythematosus and childhood lupus.
The content provided in this section is focused solely on SLE and will refer to it as “lupus.”
How Lupus Affects the Body
1. Hair: Hair loss is a common side effect of lupus. It typically occurs near the front of the forehead but can occur in patches as well.
2. Nervous System: Lupus may affect both the central nervous system (brain, spinal cord and optic nerve) as well as the peripheral nervous system (nerves outside of the brain and spinal cord). This can result in memory or thinking issues, headaches, dizziness, and mood changes.
3. Mouth: Sjogren’s syndrome, a condition that causes extreme dryness in the mouth and eyes, is common in those with lupus. Sjogren’s syndrome can cause difficulty swallowing and lead to cavities.
4. Lungs: About half of those with lupus experience lung issues. Inflammation around the lungs may cause chest pain. Others may find they have trouble breathing due to fluid around the lungs, inflammation of the lungs themselves, or the presence of scar tissue on the lungs.1
5. Cardiovascular System: Lupus can greatly affect the heart and blood vessels, making heart disease the most common cause of death in people with lupus. Those with lupus may be more likely to have high blood pressure, hardening of the arteries, inflammation around the heart, and blood clots.2
6. Kidneys: Kidney problems are common among those with lupus. Lupus can cause inflammation and scarring of the blood vessels in the kidney or the entire kidney.3 Damage to the kidneys may cause blood and/or protein in the urine, edema (fluid build-up in the body), weight gain, and high blood pressure.
7. Skin: Most people with lupus experience skin issues. These skin problems include rashes and sores that are often made worse by sun exposure. A classic sign of lupus is the “butterfly rash”, a rash that appears on both cheeks and across the bridge of the nose, resembling a butterfly.4
8. Joints: Lupus can attack the joints, causing pain, stiffness, and damage over time. Small joints (hands and feet) are more likely to be affected by lupus than larger joints.
9. Bones: Research has shown that those with lupus have an increase in bone loss, fracture and osteoporosis risk.
10. Muscles: Lupus may cause inflammation of the skeletal muscles (lupus myositis), resulting in muscle weakness and loss of strength.5
11. Antiphospholipid antibodies: Approximately 50% of those with lupus possess antiphospholipid antibodies. These antibodies cause blood to clot more easily in arteries and veins. An increased risk of blood clots raises the chances of heart attack and stroke.
The exact cause of Lupus is unknown. To better understand this disease, your symptoms, and how nutrition is affected, see the table below for more details.
- Lupus is a chronic autoimmune condition that causes pain and inflammation throughout the body, causing widespread damage. Parts of the body commonly affected include the skin, joints, kidneys, heart, lungs, and nervous system.
- The classic symptom of lupus is a butterfly-shaped rash that appears across the bridge of the nose and cheeks. Other symptoms include fatigue, joint inflammation, skin conditions, muscle pain, and sun sensitivity. Severe lupus can lead to organ failure.
- Lupus symptoms vary from person to person and may come and go in episodes of flares and symptom-free periods (remission).
- Lupus is much more common among women and typically occurs between the ages of 15-44.
- Women of color are much more likely to develop lupus and have more severe symptoms.
- The exact cause of lupus is unknown.
How Nutrition is Affected
- Certain lupus medications have GI side effects, including heartburn, nausea, vomiting, diarrhea and constipation. These side effects may result in a low appetite and the potential for nutrient and/or calorie deficiencies. Other lupus medications may affect how well your body absorbs certain nutrients.
- The body may require more energy during a severe lupus flare, increasing the need for calories and protein.
- Chronic pain and fatigue can make it challenging to shop, prepare meals, or eat, increasing the risk for being deficient in certain nutrients.
- Lupus can lead to bone loss, fractures, and osteoporosis, increasing the need for calcium and vitamin D.
- Sjogren’s syndrome, a condition common in those with lupus, causes extreme dry mouth, making it difficult to eat and swallow.
Lupus can affect different organs in the body, causing a variety of symptoms. Symptoms occur when the disease is active and is often referred to as a “flare” or “flare-up.” When the disease is not active, symptoms aren’t present. This is known as “remission.” Symptoms look different for every person and come and go over time. Often, symptoms of lupus mimic symptoms of other chronic illnesses. You know your body better than anyone – it’s important to openly communicate with your doctor and tell them about any symptoms you notice, new flares, or changes in your current condition.
To better understand your symptoms, it’s important to discuss any changes or new symptoms with your care provider. See table for more details.
To track your symptoms with certain foods and nutrients, download the Food and Symptom Tracker:
Most Common Symptoms
- Low-grade temperature, less than 101°F
- Extreme tiredness
- Joint stiffness, especially in the morning
- Weight loss
- Abnormal blood clotting
- Hair loss around the hairline
- Heartburn (GERD), stomach pain
- Poor circulation to the fingers and toes
- Butterfly-shaped rash over the cheeks
- Rash on skin exposed to the sun
- Red rash with raised, round or oval patches
- Mouth sores lasting more than a few days
- Arthritis: swelling or tenderness in the joints
- Chest pain when breathing deeply, may be the result of lung or heart inflammation
- Kidney problems: blood or protein in the urine
- Brain problem: seizures, strokes or mental health concerns
- Abnormal blood test results: anemia, low white blood cells, low platelets, positive ANA (antinuclear antibodies)
Understanding Your Medications
Getting a diagnosis can be overwhelming, especially if you need complicated care. Along with good nutrition, taking your prescribed medication as directed is an important part of a successful treatment plan. The Meijer Specialty Pharmacy care team is here for you every step of the way. Our pharmacists are available 24/7 to answer questions and to help you get the most out of your medication.
Lupus is a chronic, autoimmune condition. Autoimmune conditions happen when your immune system mistakenly attacks some of your own cells, causing damage. In lupus, this attack happens throughout your body, commonly affecting the skin, joints, kidneys, heart, lungs and nervous system. All of the medications used to treat lupus work by either targeting the cells that are wrongly attacking your body or by decreasing the inflammation that happens after the attack.