Living with lupus

Lupus is a lifelong disease that can affect many parts of your life. But, many women with lupus live long, healthy lives. You can take steps to control your symptoms, prevent lupus flares, and cope with the challenges of lupus.

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What can I do to control my lupus symptoms?

The best way to keep your lupus under control is by following your treatment plan and taking care of yourself. These steps can help.

  • Learn how to tell that a flare is coming.
  • See your doctors regularly.
  • Reduce stress by setting realistic goals for yourself.
  • Limit the time you spend in the sun and in fluorescent and halogen light.
  • Choose healthy foods most of the time.
  • Get enough sleep and rest.
  • Exercise moderately with your doctor’s OK and when you’re feeling up to it.
  • Build a support system made up of people you trust and can go to for help.

Despite your best efforts to follow your treatment plan and take good care of yourself, you may have times when your lupus symptoms are worse. Talk to your doctor or nurse about ways to relieve symptoms when this happens.

What are lupus flares?

The times when your symptoms get worse and you feel sick are called flares. Flares can come and go. You may have swelling and rashes one week and no symptoms the next. Sometimes flares happen without clear symptoms and are seen only with laboratory tests.

Some flares are mild, but others are serious and require medical care.

What are some triggers for lupus flares?

Common triggers include:

  • Overwork and not enough rest
  • Stress
  • Being out in the sun or having close exposure to fluorescent or halogen light
  • Infection
  • Injury
  • Stopping your lupus medicines
  • Other types of medicines

Even if you take medicine for lupus, you may find that some things trigger a flare. For instance, your symptoms may still flare after you’ve been out in the sun or after a hard day at work, even if you are taking your lupus medicine.

Learn how you can help prevent flares. 

How can I tell if a lupus flare is coming?

Lupus flares most often have warning signs. You can help prevent flares or make them less severe if you can spot the warning signs and get treatment quickly. Before a flare, your symptoms might get worse, or you might get new signs and symptoms, such as:

  • Feeling more tired
  • Pain
  • Rash
  • Fever
  • Stomach ache
  • Severe headache
  • Dizziness

There is no way to know if a flare will be mild or serious. Mild or moderate flares may cause only a rash or more joint pain. But severe flares can damage organs in the body, including fluid buildup around your heart and kidney disease.

Call your doctor or nurse if you get the warning signs of a flare. Your doctor may want to make adjustments to your medicine or treatment plan.

Should I change what I eat because I have lupus?

Maybe. You may have to make changes to what you eat based on your symptoms or treatment plan. Ask your doctor or nurse if you need to eat special foods or limit other foods because of your lupus.1

  • If you develop hyperlipidemia (high level of fats in the blood) because of your lupus, you may need to follow a low-fat eating plan.
  • If steroids and other medicines cause you to gain weight, you may want to follow a low-calorie eating plan.
  • Because people with lupus need to avoid the sun, you may lack vitamin D.2 Your doctor or nurse may advise you to take a vitamin.

Create healthy meals based on your needs with the ChooseMyPlate.gov SuperTracker tool.

Can I get vaccines if I have lupus?

Yes, you can get many vaccines, but not all. Vaccines that do not contain live viruses are safe for people with lupus. Lupus also raises your risk for infections like the flu or pneumonia, so your doctor or nurse will likely recommend getting the flu shot and pneumonia vaccines. 

Vaccines that are safe for people with lupus include:

  • The flu shot (Make sure you request the flu shot and not the nasal spray. The nasal spray has a live form of the virus that is not recommended for people with lupus or anyone living with you.)
  • Pneumonia vaccine
  • Human papillomavirus (HPV) vaccine
  • Tetanus, diphtheria, and acellular pertussis (Td/Tdap) vaccine

Vaccines with live viruses, and that may not be safe for people with lupus, include:

  • Nasal spray vaccine for the flu
  • Varicella (chickenpox) vaccine
  • Herpes Zoster (Shingles) vaccine
  • Measles, Mumps, Rubella (MMR) vaccine

However, some people with lupus have no problems when they get vaccines with live viruses. Talk to your doctor or nurse about what is best for you.

What can I do to cope with lupus?

Dealing with a chronic disease like lupus can be challenging. Concerns about your health and the effects of lupus on your work and family life can be stressful. Talk to your doctor and others about your symptoms and feelings. You also may want to consider counseling or joining a support group. Many people find it helpful to talk to others who may be having similar experiences.

Did we answer your question about living with lupus?

For more information about living with lupus, call the OWH Helpline at 1-800-994-9662 or check out the following resources from other organizations:

Sources

  1. Klack, K., et al. (2012). Diet and Nutritional Aspects in Systemic Lupus Erythematosus. Brazilian Journal of Rheumatology; 52(3): 384-408.
  2. Kamen, D., Aranow, C. (2008). Vitamin D in Systemic lupus erythematosus. Curr Opin Rheumatol; 20(5): 532-537.