There is no clear agreement on what tests should be done in lupus patients. Different doctors have very different approaches. In some ways, this should not be surprising since lupus is a disease that may affect many areas of the body. The most common are skin, joints, kidney, lungs, heart, brain and blood counts).
How lupus manifests is so variable too. Plus, there are limited forms of lupus that may require almost no regular testing because the skin is the only involved area. This is called “discoid lupus” or “subacute cutaneous lupus.”
The best tests will depend heavily on several factors:
For example, take a person who has had skin rashes and joint pain without other major problems and is currently doing well. All that may be necessary is periodic tests of the urine and blood tests to look for kidney involvement, anemia, or other low blood counts.
On the other hand, take a patient with past problems of kidney failure or pleurisy (inflammation of the lining of the lungs) who now has chest pain and takes multiple drugs for the disease. In this case, more extensive testing would be best. This testing might include measurement of kidney and liver function. Or checking for anemia or other low blood counts, chest X-rays, EKG and urinalysis.
Of course, not every problem a lupus patient has is due to their lupus. Keeping an open mind is important in this disease. And testing has to be individualized to include both lupus and unrelated problems. As an example, consider a patient with abdominal pain. While lupus occasionally causes problems with the digestive system — a gallstone, which is unrelated to lupus — could be responsible.
In certain situations, more elaborate and specialized testing may help. This includes antibody tests, electrical tests of muscle function or an MRI of the brain. But these are not generally helpful on a regular basis.
If you have lupus, it’s best to work with your doctors to get those tests that are most likely to affect treatment. You and your doctors should keep an open mind about whether lupus or an unrelated condition is responsible for a problem.