Ongoing Monitoring and Screening for Lupus

Once you’ve been diagnosed with lupus, your doctor will want to monitor your disease closely. These follow-ups will help your health care team find the right combination of treatments to prevent or reduce the severity of flares, and hopefully, bring your disease into remission. Regardless of your symptoms, you should also educate yourself about lupus and look for support to help ease the isolation that a chronic condition often causes.

Monitoring mild lupus

People with mild lupus symptoms that do not involve any major organs can be followed by a primary care physician (family doctor). In addition to a physical exam, several blood tests and a urinalysis will be ordered every three to six months, depending on how active your lupus is. The blood tests include:

  • Anti-dsDNA antibodies
  • Complements
  • Creatinine
  • Complete blood count (CBC)

If you take the antimalarial drug hydroxychloroquine, you will need routine eye exams by an ophthalmologist to check for eye damage that can be caused by this medicine.

If you take steroids or immunosuppressants to control your lupus, you will need regular screenings for signs of high blood pressure, high cholesterol, diabetes, osteoporosis, and kidney disease.

You will be encouraged to keep your vaccinations up to date and get all regular routine cancer screenings, and screenings for cancers more common to those with lupus, including blood disorders, non-Hodgkin lymphoma, lung, and cervical cancer. However, people with lupus should only get live vaccines at specific times, so always consult your doctor before getting vaccinated.

Everyone with lupus should see their dentist every six to 12 months because of the increased risk of periodontal (gum) disease and dry mouth.

Monitoring moderate to severe lupus

People with moderate to severe lupus symptoms that affect any of the major organs should be followed by a rheumatologist (a doctor who specializes in treating rheumatic diseases like lupus). Your family doctor may still be involved in, or coordinate your care, but other specialists will be necessary if your lupus worsens.

Other doctors you may need to see include:

  • Nephrologist for kidney complications
  • Cardiologist for heart and vascular complications
  • Pulmonologist for lung complications
  • Dermatologist for skin complications
  • Neurologist for neurologic complications

If your lupus progresses to more advanced stages, the type of tests and how often those tests are needed will depend on the organs involved.

  • Those with kidney nephritis will need to be monitored monthly, if not more. Tests commonly ordered in these cases include urinalysis, 24-hour urinary protein level, creatinine clearance, CBC, cholesterol, calcium, phosphorus, alkaline phosphatase, sodium, potassium, complements, and anti-dsDNA.
  • Those taking long-term or high doses of steroids will need glucose testing every three to six months, cholesterol tests yearly, and bone density tests (DEXA) every one to two years.
  • Those receiving immunosuppressants or cytotoxic agents (chemotherapy) will need a CBC and liver function tests every one to two weeks in the beginning, then eventually every one to three months.
  • Those with severe hemolytic anemia (low red blood count) will need weekly blood tests and potentially blood transfusions.
    Those with severe thrombocytopenia (low platelet count) will need weekly blood tests and potentially blood transfusions.

Special considerations

Women with lupus who get pregnant will need close attention by their entire health care team and should see a high-risk OB/GYN.

Anyone with lupus should be evaluated by their doctor before surgery, before taking any drug containing estrogen or after a stroke.

Judging lupus severity

Your doctor may use the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) to decide whether your lupus is changing and whether it is mild, moderate or severe. This tool gives your doctor specific signs to look for if your lupus is getting worse. The signs include changes in blood and urine tests, and whether you’ve recently had a stroke, seizure or psychosis, new eye problems, worsening headaches, arthritis or muscle aches.

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Written by: Jessica Johns Pool | Last reviewed: January 2020