Lupus Self-Management Tools

These tools will help you better-manage your lupus.

 

Understand and track your symptoms

It's important to know the symptoms of lupus and keep track of your symptoms. Watch for the following lupus symptoms and call your doctor if you experience any new or worsening symptoms:

  • Rashes: A butterfly-shaped rash over the cheeks or a red rash with raised round or oval patches or a rash that lasts for 2-3 days on skin that was exposed to the sun
  • Alopecia/bald spots
  • Constant cough or persistent shortness of breath
  • Sores (ulcers) in the mouth or nose lasting from a few days and frequent episodes of oral ulcers/sores
  • Joint stiffness or swelling in two or more joints that lasts for a few weeks
  • Constant chest pain which worsens with taking deep breaths or coughing and lasts longer than 24 hours
  • Blood in the urine, foamy appearing urine, or morning puffiness in ankles/around eyes
  • New seizures
  • New constant weakness or numbness in extremities

Know your triggers

Common known triggers of lupus are:

  • Ultraviolet rays from the sun or from fluorescent light bulbs like sun lamps or tanning beds
  • Sulfa drugs such as: Bactrim and Trimethoprim-Sulfamethoxazole(Septra®), Tolbutamide (Orinase®), Sulfasalazine (Azulfidine®)
  • Sun-sensitizing tetracycline drugs such as minocycline (Minocin®)
  • Stressors like infection, viral illness, emotional stress
  • Stressors associated with pregnancy

Avoiding triggers:

  • Use sunscreen and clothing that protects from UV rays
  • Avoid tanning beds/sunlamps
  • Plan your pregnancy
  • Avoid stress
  • Always ask your doctor/pharmacist if medication(s) include sulfur and if it is safe for people with lupus

Thoroughly understand your medications

  • Hydroxychloroquine: Do not crush, break, or chew it as it is a coated medication. Take with food or milk to avoid abdominal discomfort. Have your eyes examined every 12 months. This medication is relatively safe during pregnancy and breastfeeding.
  • Mycophenolate: Swallow the capsule or tablet whole, do not crush, break or chew. Take with food if needed to prevent nausea or stomach pain. Use contraception while on this medication and talk with your doctors if you are planning to become pregnant. This medication is safe to take during breastfeeding.
  • Azathioprine: You may take this with food, or in divided doses, to decrease gastrointestinal intolerance. This medication can make your skin more sensitive to sunlight so always wear sunscreen and do not use sunlamps or tanning beds. This medication is safe to take during breastfeeding.

Get your screenings

Lupus, especially when active, can lead to accelerated atherosclerosis (clogging of the arteries) and lead to heart attacks, heart failure or strokes. Lupus patients should be screened/monitored for:

  • High blood pressure
  • High cholesterol
  • Symptoms of concern for heart attacks
  • Bone health
  • Retinal (eye) exam

Manage your diet

  • Maintaining a balanced diet can help you be more active
  • Use choosemyplate.gov to plan meals, discover strategies to improve your diet and learn more about the types of foods that are healthy

Eat more:

  • Berries/citrus fruits (consult your pharmacist before drinking grapefruit juice with certain medications)
  • Fruits and vegetables in a variety of colors
  • Nuts/seeds
  • Olive oil
  • Whole grains

When possible, eat foods that are sautéed, steamed or roasted. Raw vegetables can increase bloating or diarrhea

 

Nightshades and garlic: Avoid for two weeks. If symptoms remain the same, you can consider incorporating them back into your diet

Focus on infection prevention

  • Get a pneumonia vaccination: Lupus patients are predisposed to pneumonia and blood stream infections. Pneumonia vaccines are killed vaccinations and can prevent lung/blood stream infections. Ask your doctor about getting your pneumonia vaccination.
  • Flu vaccination: Prevent influenza by getting your flu vaccine during flu season (October to February). Ask your doctor about getting your flu vaccination.
  • Avoid live vaccines: If you are on immunosuppressive medications or high doses of steroids avoid getting live vaccines like mumps, rubella, measles, chickenpox, oral typhoid vaccine, yellow fever, nasal flu vaccine and live zoster vaccines.
  • Practice good hand hygiene: wash your hands after using the bathroom, blowing your nose or touching areas in public spaces and before you eat or touch your face.

Manage your fatigue

More than 80 percent of lupus patients experience fatigue. To better manage your fatigue:

  • Listen to your body and understand your limits
  • Participate in daily exercise. Aerobic exercise is effective for lessoning lupus fatigue. It is important to do movement and strength-building activity every day like yoga, daily stretches, using weights and/or doing water aerobics.
  • Alternate daily activities with short periods of rest
  • Plan ahead, and prioritize your activities
  • Shop online and have items shipped directly to you
  • Prepare meals in advance
  • Accept fatigue and never indulge in self-blame
  • It is OK to ask for help
  • Build a strong family and friend network to support you during periods of extreme fatigue/flare
  • Join a support group to learn more fatigue-fighting tips
  • Establish good sleep patterns and eat a healthy diet

Pre-plan and discuss your pregnancies

  • Consult with a rheumatologist and a high-risk obstetrician before you try to become pregnant and try to delay pregnancy until your disease has been stable for at least 6 months
  • Pregnancy sometimes can lead to a lupus flare. Build a strong rapport with your rheumatologist and obstetrician during your pregnancy
  • Pregnant patients with active lupus are at higher risk of high blood pressure, miscarriages, preterm delivery, excessive bleeding after delivery and/or blood clots in the leg or lung. It is a good idea to plan your pregnancy for after your lupus is stable or quiet.
  • Your pharmacist can help you weigh the risks and benefits of medications taken during your pregnancy
  • You should not get pregnant while you are taking certain medications like Mycophenolate, Methotrexate, or on infusion therapies

Quit smoking

There are many options available to help you quit smoking. Ask your doctor for help. Smoking is a known lupus trigger and can lead to the following diseases:

  • Heart health: Heart attacks, strokes
  • Vascular complications: Raynaud's, spasms, clots
  • Kidney involvement
  • Hypertension
  • Infections: Respiratory infections are among the most common. Smoking cigarettes increases the risk of pneumococcal pneumonia and chronic bronchitis. Researchers says that passive smoking, or regular exposure to secondhand smoke, also raises the risk of having this type of pneumonia.
  • Digestive issues: Heartburn
  • Bone health: Fragile bones that lead to osteoporosis

Dealing with oral ulcers

  • Alum powder: Apply for 60 seconds and spit (do not swallow). Avoid rinsing with water for 24 hours. Studies have not reported any side effects but avoid excessive use as there can be risk of aluminum toxicity.
  • Oral hygiene: Brush your teeth twice a day with fluoride toothpaste and floss daily
  • Quit smoking: Smoking increases your risk for gum disease and oral ulcers
  • Magic Mouthwash®: Apply for 60 seconds and spit (do not swallow). Apply up to three times daily. Avoid frequent application to prevent side effects from excessive use of lidocaine.
  • Benzocaine®: Apply to affected areas up to four times daily and do not swallow. Common side effects are mucosal irritation, burning sensation or itching. Avoid excessive use.
  • If your ulcers are not improving, speak with your doctor about other elixirs (steroid elixirs, lidocaine elixirs) that can be prescribed

Dealing with thinning hair

  • Vitamin B complex/Biotin supplements: Daily use of Vitamin B complex helps strengthen the nervous system and the body's integumentary (skin and hair)
  • Thyroid check: If you are experiencing hair loss, feeling fatigued and/or having cold sensitivity or hot flashes, talk to your doctor about getting your thyroid hormone levels checked
  • Multivitamin and minerals: Your body requires 13 vitamins to grow and develop normally. Take a multivitamin daily.

Dealing with joint pain

  • Omega-3 supplements: A polyunsaturated fatty acid present in soybean, canola oil, flaxseed and fish oil. Omega 3 supplements have anti-inflammatory benefits which can help in joint pain, stiffness and swelling.
  • Turmeric and Black Pepper®: Turmeric is an ancient herb used in cooking. Curcumin is the active ingredient which some people believe can help reduce inflammation in joints. Turmeric is generally considered safe but high doses or long-term use of turmeric may cause gastrointestinal issues and cause blood thinning. If you are pregnant or on blood thinners, talk to your doctor before starting this herb.
  • Glucosamine Sulfate®: Most studies show it to be likely effective for joint tenderness in arthritis. Talk to your doctor before starting this supplement if you are pregnant or on a blood thinner.

Dealing with sun sensitivity

  • Sunscreen: Carry sunscreen with an SPF of at least 70 and be sure that it blocks UV-A and UV-B rays, both of which are harmful to people with lupus. Apply sunscreen to all areas of the body, even those covered by clothes. Reapply sunscreen every three hours especially if you are in the water.
  • Protective clothing: Try wearing long sleeves, hats, pants, and scarves when going outdoors on a sunny day. Wear clothing that includes UV ray blocking protection.
  • Avoid tanning beds and sun lamps

Get better sleep

  • Proper sleep hygiene: Maintain a regular sleep routine. Go to bed and wake up at the same time each day. Limit daytime naps to 30 minutes.
  • Avoid caffeine and nicotine in the evening and stop eating at least 2 hours before sleeping.
  • Regular exercise can promote good sleep quality
  • Drink milk at bed time
  • Talk to your doctor if you snore at night time, feel unrefreshed or fatigued in morning
  • Maintain a sleep diary: Keep track of any triggers you identify and/or strategies that help you sleep
  • Melatonin: Talk to your doctor if you are using melatonin as a sleep aid

Get more exercise

Exercise helps keep joints flexible and may prevent heart disease and strokes. Exercises that are good for lupus patients include water aerobics, yoga, walking and swimming.

 

Yoga

 

This ancient exercise form helps the body attain deep relaxation. Restorative, lyenar and chair yoga are a recommended aid for all form of arthritis. Some forms of yoga should not to be done without instruction or supervision.

Water Aerobics

 

Water walking is good exercise for people with joint pain and damage. The water's buoyancy supports the body's weight, which reduces stress on the joints and minimizes pain. In fact, water provides 12 times the resistance of air, so the walking strengthens and builds muscle. Ideally done in heated pools – typically 82 to 88 degrees – which can help soothe pain. Cooler temps might not feel as good, but you'll still reap the benefits.

Walking

  • Track your steps and try to walk non-stop for 20-30 minutes
  • Tracking your activity levels and setting goals for each week can help you develop endurance

Strengthening Muscles

  • Strengthen muscles to support your knees: Do a ball squeeze between knees, 5 second squeezes, for 60 total seconds or do seated straight leg raises for 30 seconds on each leg
  • Strengthen hip and thigh muscles: Marching in place for 30 to 60 seconds or walking forward and backward, 10 steps each way
  • Strengthen and improve your upper body range of motion: Do arm circles backward for 30 seconds. Work arms and back by moving your arms on a table top as if you're doing the breast stroke. Continue for 60 seconds. Do wrist circles, wrist bends (up and down), and open and closed fingers for 10 seconds each.