Symptoms can be widespread all over the body. Most of them tend to occur during flares, but some may be present all the time. These include:

• Disabling fatigue
• Joint pain
• Joint swelling
• Headaches
• Low-grade fever
• Puffiness in the hands, feet, and legs
• Chest pain
• Rash on cheeks and nose
• Sensitivity to sunlight
• Mouth ulcers
• Blue fingers with temperature changes (Reynaud’s)
• Hair loss
• Blood clots

When lupus flares, many people complain of “feeling like they have the flu” because their body is attacking itself as if its cells were foreign. The disorder is often mistaken for chronic fatigue syndrome, fibromyalgia, Lyme disease, or arthritis.

Generally, people use the term “lupus” to refer to systemic lupus erythematosus (SLE) – the most common form of lupus. However, other, more specific forms of lupus also exist. The main types of lupus include:

• Systemic lupus erythematosus (SLE)
• Discoid lupus erythematosus (DLE)
• Subacute cutaneous lupus erythematosus (SCLE)
• Neonatal and pediatric lupus erythematosus (NLE)
• Tumid lupus
• Drug-induced lupus

You may be at higher risk for lupus if you have any of the following:

• Family history of autoimmune disease (mother, father, sibling)
• Female gender
• Age between 15 and 40 years
• Darker-skinned ethnicity
• History of viral infection
• Chronic exposure to chemicals

Diagnosing lupus can be tricky for three reasons: First, lupus symptoms present differently across individuals. Secondly, symptoms can mimic other commonly occurring disorders. Lastly, blood testing only comes back positive during flares which may occur intermittently with long periods of no symptoms.

Doctors consider eleven major criteria to be classic signs of lupus. If you have four or more of the criteria, the doctor can officially diagnose lupus, sometimes without blood testing.

These include:

Malar rash. A rash shaped like a butterfly over the nose and cheek area.

Discoid rash. Raised red rash that appears in patches on the skin.

Sensitivity to sunlight.

Mouth or nose ulcers.

Arthritis. Must be in two or more joints and have swelling, pain, and tenderness.

Cardio-pulmonary signs. Inflammation of the heart and lungs.

Neurological. Psychosis, seizures, anxiety, or depression.

Kidneys. Protein in the urine, or cellular casts in urine.

Blood. Clotting, anemia, low white blood cells, or low platelets.

Immunity. Cardiolipin antibodies or antibodies to double-stranded DNA.

Positive ANA. This may or may not be positive and there is also a high possibility of false positives. It isn’t always a confirmation of lupus.

You will most likely be referred to a Rheumatologist for treatment of lupus. Together, you will come up with a treatment plan that best fits your symptoms. The treatments include:

Non-steroidal anti-inflammatory drugs (NSAIDs). Anti-inflammatories help lower the inflammation in the body and reduce the activity of the autoimmune disorder if taken every day on a regular basis. They also treat local symptoms like fever, joint swelling, and pain. They have to be closely monitored due to long-term side effects on the kidneys, heart, and/or possible stomach bleeding.

Anti-malaria drugs. Malaria medications help to reduce the severity of lupus symptoms and control the disorder. Side effects include upset stomach and retinal damage.

Immunosuppressant medications. In severe cases of lupus, the doctor may opt to give you drugs that lower your immune system reaction. Using these will raise your risk of getting a serious infection. Other side effects include liver damage, nausea, fever, diarrhea, and an increased risk of cancer.

Corticosteroids. These are reserved for severe flares because they can stop an immune system reaction quickly. However, corticosteroids can cause severe side-effects if they are used too often. Side effects include diabetes, osteoporosis, risk of infection, bruising, and weight gain.

Lupus can be managed with a good treatment plan and lifestyle changes. Things you can do to help your quality of life and feel better are:

Avoid the sun. Sun can increase the chances of a flare and cause a rash. If you go out in the sun use at least SPF15 sunblock, wear long-sleeves, and use a hat. Use extra caution in the middle of the day, at the beach, and in the mountains where sun exposure is the highest.

Eat healthily. Eat a healthy balanced diet with a variety of fruits and vegetables. Increase your intake of fish, which contains omega-3 fatty acids. This seems to help with joint pain. Use caution with alfalfa sprouts that may increase inflammation. If you are put on steroids for a flare, lower your consumption of carbohydrates and sugar to avoid increased blood sugar levels.

Exercise. With your doctor’s okay, try some gentle exercise such as low-impact aerobics, yoga, swimming, or walking. If you are having a flare, give yourself some rest because you can injure your joints easier. Your doctor will help you come up with a good and safe exercise plan.

Use heat. When you have joint pain and inflammation try warm moist heat or soak in a bathtub. Ice isn’t always recommended for lupus pain, but it can be used early in an injury to reduce swelling.

Don’t smoke. The chemicals in cigarettes can trigger lupus flares. It also reduces blood flow and can worsen Raynaud’s phenomenon (fingers turning white and/or blue).

Rest. It is common for lupus to make you feel more tired. Pace your activities and give yourself frequent rest periods. If you overdo it one day, you may have to take three days to feel better.

Report infections promptly. If you develop an illness or infection and are on drugs to suppress your immune system, tell your doctor right away. Infections in people with lupus can become life-threatening quickly.

It is very important to discuss alternative medicine for lupus with your physician. Please note that any herbal remedies (e.g., echinacea) that “boost” the immune system are contraindicated in autoimmune disorders. They can make a flare worse. Still, there are a few things you can add to your regimen to help relieve symptoms:

Vitamin D. Make sure you are getting enough vitamin D other than sunlight since lupus requires you to avoid the sun. Your doctor can recommend the best supplements.

Fish oil capsules. Omega-3 fatty acids may help. Use with caution if you are on blood thinners.

Dehydroepiandrosterone (DHEA). DHEA is a mild male hormone recommended by the John Hopkins Lupus Center in treating some symptoms of lupus. There are some indications that DHEA may help lessen fatigue, joint pain, alopecia, and inflammation. People on high doses of steroids have been able to lower their dosage when using this supplement.

If left untreated, lupus continues to attack the body. Severe complications can result, including:

• Lung Damage
• Kidney Disease
• Blood Vessel Problems
• Brain and Nervous System Issues
• Heart Disease
• Severe Infections
• Osteoporosis
• Cancer
• Pregnancy Complications

With good care and management, lupus has a very good prognosis. Before medical advances, lupus was often fatal. While there is no cure, there are very good treatments to manage the effects on the body.

Flares may be triggered by the following:

Sun exposure. No one knows why, but sunlight seems to be a trigger for lupus flares and problems with the skin in lupus patients.

Infection. The body may fight off an infection and continue to fight once the infection is gone, attacking the body’s tissues and cells.

Environmental exposure to toxins. Exposure to toxins in the environment may trigger the body’s immune system.

Certain medications. Medications that are used for things like high blood pressure, seizures, and antibiotics may cause a temporary “lupus-like” flare. Symptoms will often clear up if the medication is stopped. Always see your doctor before stopping any medication.

The Lupus Foundation of America has a webpage devoted to clinical trial resources for lupus here.

Centers for Disease Control and Prevention. (2018, October 17). Systemic lupus erythematosus (SLE). Retrieved from Centers for Disease Control and Prevention: https://www.cdc.gov/lupus/facts/detailed.html#sle

Lupus Foundation of America Staff. (2016, October 6). Lupus facts and statistics. Retrieved from Lupus Foundation of America: https://www.lupus.org/resources/lupus-facts-and-statistics

Lupus Foundation of America Staff. (2020, October 21). What is lupus? Retrieved from Lupus Foundation of America: https://www.lupus.org/resources/what-is-lupus

Maidhof, W. & Hilas O. (2012, April). Lupus: An overview of the disease and management options. Pharmacy and Therapeutics, 37(4), 240-246. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3351863/

Sawalha, A. H. & Kovats S. (2009, June 24). Dehydroepiandrosterone in systemic lupus erythematosus. Current Rheumatology Reports, 10(4), 286-291. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2701249/