Lupus is an incredibly complex autoimmune disease and diagnosing lupus can take a lot of time and many doctor visits. Patients will often get diagnosed with other “overlap” diseases such as rheumadoid arthritis (RA), Sjogren’s Syndrome, scleroderma, fibromyalgia or Raynaud’s Phenomenon even before a diagnosis of lupus is made. This can be incredibly frustrating for you as well as your doctors. Understanding the process of getting a lupus diagnosis is one of the most common questions we get here at Molly’s Fund, as well as a main topic in the discussions on our Facebook page and our other social media platforms. The goal of this blog is to give a clear understanding of the diagnosis process and provide the tools needed to go back to your doctor (or a new doctor) armed with the information you need.
Do you think you may have lupus? If you have shown several of the signs for lupus, you and your physician may now take the next step in determining if it is lupus or another auto-immune disease. In order to make such a diagnosis, the individual must first show clinical evidence of a multi-symptom disease (i.e., the individual has shown abnormalities in several different organ systems).
To learn more about the symptoms that can be specific to lupus, please refer to our blog post on Lupus Symptoms and Signs. There you can find an excellent graphic showing the body and where lupus can present itself along with other helpful information on that topic. Back to top
Very Important Information
Before receiving any test, it is important to understand that no one test alone can determine a lupus diagnosis. A positive test result does not necessarily mean that you have lupus, nor does a negative test result mean that you do not have lupus.
Individual test results can also vary from one visit to another, which can be very confusing. A doctor will take into consideration a combination of factors as well as the test results when diagnosing lupus, and because of this, we encourage you inquire about the ANA and DNA testing, which doctors are often reluctant to give. These two tests together can create a clearer picture of whether the diagnosis could be lupus. Again, we must remind you that just because you test negative today, it does not mean that you won’t test positive tomorrow.
If you are not satisfied with the results or are uncomfortable with your physician for any reason, please seek a second opinion. You are your own best advocate! Back to top
Because lupus is so complicated and can affect people so differently, it is important to see a doctor who specialized in the treatment of lupus, for most lupus patients, a rheumatologist will be their primary physician.
A rheumatologist diagnoses (detects), treats and medically manages patients with arthritis and other complex rheumatic diseases. These health problems affect the joints, muscles, bones and sometimes other internal organs (e.g., kidneys, lungs, blood vessels, brain). Try our referral network to help you find one in your area.
Tips to prepare for your first doctor’s appointment:
- Write down a complete list of symptoms, being as specific as possible.
- Write down any significant life changes or sources of stress.
- Write a list of medications you are taking, and have taken in the past.
- List any diseases or conditions you are suffering from, or have suffered from in the past.
How is a lupus diagnosis confirmed?
Because lupus can mimic several other illnesses, a diagnosis will usually take into consideration several factors:
- The patient’s entire medical history
- Signs and symptoms (It is very important to keep detailed records of your symptoms)
- Physical examination findings
- An analysis of the results from routine laboratory tests (see below listing)
- Analysis of specialized tests related to immune status (see below listing)
The American College of Rheumatology has set forth an official list of 11 Criteria for classifying a possible systemic lupus diagnosis. The presence of at least four (4) of these criteria can lead to a possible lupus diagnosis.
11 SLE criteria, from the Lupus Research Institute:
- Malar rash: butterfly-shaped rash across cheeks and nose
- Discoid (skin) rash: raised red patches
- Photosensitivity: skin rash as result of unusual reaction to sunlight
- Mouth or nose ulcers: usually painless
- Arthritis (nonerosive): in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
- Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
- Neurologic disorder: seizures and/or psychosis
- Renal (kidney) disorder: excessive protein in the urine, or cellular casts in a urinanalysis
- Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
- Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
- Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. However, a positive ANA test does not necessarily mean you have lupus.
If the physician has suspicions that you could be suffering from lupus, or another auto-immune disease, he or she will most likely order several tests. Some of these tests may include the following list:
- Complete Blood Count (CBC): This test will measure the number of red and white blood cells, platelets as well as the amount of hemoglobin (a protein in red blood cells.) Results from this test can indicate anemia, or a low white blood cell or platelet counts which both often occur in conjunction with lupus.
- Chemistry Panel: This is a test to assess kidney function and liver function. Information on blood sugar, electrolytes, and cholesterol and triglyceride levels will also be assessed. Abnormalities could indicate the development of complications from lupus.
- Serum Protein Electrophoresis Test: This is a blood test used to reveal increased gammaglobulin and decreased albumin.
- C-Reactive Protein (CRP): This protein can be a marker of inflammation.
- Complement: Complement proteins are involved in inflammation. These levels are usually low in patients with active disease, especially kidney disease. A low complement is not, in itself, a diagnostic of lupus but must be taken in the context of other clinical findings.
- Erythrocyte Sedimentation Rate: This is a blood test that is used to determine the rate at which red blood cells settle to the bottom of a tube in one hour’s time. If the rate is faster than normal, it may be an indication of a systemic disease, like lupus. It is important to note that this sedimentation rate, or rate of settling, does not specifically indicate lupus, but can be elevated if other inflammatory conditions are present like cancer or an infection.
- Kidney and Liver Assessment: Because lupus can affect these organs, blood tests will be done to see how well they are functioning.
- Urinalysis: An increased protein level or red blood cells in the urine can occur in lupus if it has affected your kidneys (this is called lupus nephritis). An examination of a sample of your urine sample can determine how effective your kidneys are at filtering the blood to eliminate waste. For more information, see our post on Breaking Down Your Urinalysis.
- Antinuclear Antibody Test (ANA): A positive ANA test for the presence of these antibodies, which are produced by your immune system, indicates a stimulated immune system. While most people with lupus have a positive ANA test, most people with a positive ANA test do not have lupus. If you have a positive ANA test, more specific antibody testing will most likely be advised.
- Anitphospholipid Antibodies (APLs): Phospholipids are antibodies that are present in approximately one out of every two people with lupus. A positive test can help confirm diagnosis as well as help identify women with lupus who have certain risks (like blood clots and miscarriage) that would require preventative treatment and monitoring. Note that the presence of phospholipids also occurs in people without lupus and therefore, there presence alone is not enough for a lupus diagnosis.
- Anti-dsDNA test:This is the protein directed against the double-stranded DNA, the material making up the genetic code. This test is very specific for lupus, and can be used to determine a lupus diagnosis. One in every two people with lupus has a positive anti-dsDNA test. The presence of this anti-dsDNA can indicate a higher risk of lupus nephritis, kidney inflammation that can occur with lupus. This test can confirm the need to closely monitor the kidneys. Only half the people with lupus have a positive test, so a positive or negative test does not mean you have lupus.
If your physician has suspicions that your heart or lungs have been affected by lupus, he or she may advise for specific imaging tests in diagnosing lupus:
- Chest X-Ray: Abnormal shadows in a chest x-ray may be an indication of fluid or inflammation in your lungs.
- Echocardiogram: Sound waves used in this test produce images of your beating heart in real time. It can suggest problems with valves and other parts of your heart.
It is very common for lupus to affect the kidneys negatively in many ways. You can read about this in our blog on lupus nephritis as well. Treatments will vary based on the type of damage that occurs. In some cases, testing a small sample of the kidney tissue will help determine the best treatment and course of action to be taken. A needle or small incision is usually used to obtain this sample. Back to top
Some Questions to Ask After a Lupus Diagnosis
Once a lupus diagnosis has been confirmed by your physician, you will have many questions. Here is a quick list of questions to help you get started in getting the necessary information in order to have a better understanding of your specific symptoms and move forward towards the most successful course of treatment and/or management of the disease. It may also be helpful to have an advocate along with you like a friend or loved one to help you remember important details:
- How can I help control my symptoms?
- How will lupus affect my body?
- Had the disease affected or damaged my kidneys or other vital organs?
- Would it be safe for me to become pregnant?
- What are my treatment options, medications? What are the side effects?
- Are there any doctors you can recommend who specializes in treating lupus?
- How often should I have checkups?
- Are there any alternative treatments for lupus?
You Are Not Alone
It can be very scary to receive a lupus diagnosis, have your life disrupted and cause you to become uncertain about the future. The good news is that strides are continually being made in the discovery of better diagnostic tools and more effective medications. With the combination of correct treatment, medication, and living a healthy lifestyle, many people with lupus can look forward to a leading a long and productive life.
We encourage you to reach out to friends, family, and join support groups to share your feelings and fears. Also, remember to be your own best advocate in your journey with lupus, take great notes, and bring a support person with you to each visit to help remind you of the doctor’s advice and information. We are always here for you at Molly’s Fund, please join our online community and share your story or ask us any questions you may have! Back to top
Revised by: Kelli Roseta
*All images unless otherwise noted are property of and were created by Molly’s Fund Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Molly’s Fund Fighting Lupus. **All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.