Lupus Diagnosis: Connecting the Dots

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Known as “The Great Imitator,” getting a lupus diagnosis can be frustrating. It involves reviewing laboratory tests, symptoms, and family history

When you’re not feeling well, you want to know what the cause is. Unfortunately, it is not uncommon for the lupus diasgnosis process to take months or years as doctors evaluate the web of symptoms that are associated with this complex disease.

Any physician can diagnose you with lupus including your primary care provider (PCP), hospitalists, or pediatricians. However, rheumatologists are experts in diagnosing and treating autoimmune diseases such as lupus.

LupusCorner conducted a poll of 119 Lupus Warriors about the lupus diagnosis process. More than 1/3 reported seeing 6 or more doctors before getting a diagnosis. Only 14% reported getting a diagnosis from their original doctor.

While this may suggest that seeing more doctors will hasten your diagnosis, keep in mind that there are complexities with changing clinicians. Each new doctor will need to conduct a thorough review of your current and past symptoms. Medical records are still not always quickly or effectively shared between hospital systems. And, it may result in redundant laboratory tests which can be costly.

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Laboratory tests & lupus diagnosis

Lab tests help clinicians better understand how the body is functioning at the system, organ, and cellular levels. Throughout the course of care, these tests are used to monitor disease progression, too. However, there is not currently a single laboratory test to determine if a person has lupus.

Blood tests

  • Antinuclear antibody test (ANA)
    • Antinuclear antibodies are parts of the immune system that attack the body instead of foreign invaders
    • A positive ANA is the first requirement for the new lupus diagnosis guidelines created by the American College of Rheumatology (ACR) and the European League Against Rheumatism (EULAR)
  • Complete blood count (CBC)
    • Measures key components from the blood including:
      • red blood cells which carry oxygen through the body
      • white blood cells which are part of the immune system and attack invaders
      • hemoglobin, the oxygen-carrying protein in red blood cells
      • hematocrit, the percentage of red blood cells in the blood
      • platelets which contribute to blood clotting
  • Prothrombin time (PT) test
    • Coagulation tests measure how long it takes blood to clot
  • Complement tests (C3 and C4)
    • Measure proteins in the blood that make up the complement system in the immune system
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Common Symptoms & Lupus Diagnosis

Lupus is the cause of inflammation and swelling throughout the body. It can result in a number of symptoms, many of which can come and go over time. Because of this, it’s important to keep track of symptoms using a journal or a digital tool.

LupusCorner app, available on both iOS and on Android, includes an easy symptom tracker (along with a medication tracker and a community forum).

Symptoms to monitor include:

When tracking symptoms, it’s not only important to know which symptoms you are experiencing. It is also necessary to record when symptoms start and stop, the severity of a given symptom, and the frequency.

Beyond tracking symptoms, clinicians will also look at family history because of the genetic component to lupus. Also, it’s important to share illnesses other than lupus, particularly other autoimmune conditions including Crohn’s disease, multiple sclerosis (MS), and rheumatoid arthritis (RA).

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Getting Support During the Lupus Diagnosis Process

Your time with a rheumatologist is valuable. Here are some tips to make the most of it!

  • Take notes
    • It can help you remember what was said and jog your memory later
  • Ask questions
    • Don’t be afraid to ask! If something is unclear  or needs additional explanation, just ask. And this extends to after the visit as well – don’t be afraid to call the clinic
  • Make a list of your medications & symptoms before getting there
    • Medication reconciliation is part of the steps of a visit. Don’t waste time trying to remember
  • Bring a friend or family member
    • Having someone else in the room with you can ensure you get your questions answered during the visit and can help with visit follow ups
Comments (4)

4 thoughts on “Lupus Diagnosis: Connecting the Dots

  1. I have almost all the symptoms , butterfly rash, extreme fatigue, painful and swollen joints but my ANA always says negative. I’m 67, and I worked in Ground Zero for 3 weeks.

  2. I believe I have Lupus but have been misdiagnosed with RA. I really do not believe that I have RA. I saw a Rhuemetologist and they do not believe that I have RA either. However, this Rhuemetologist was a jerk. He didn’t want to do anything to help me. I waited for months to see this Dr too Now, I’ve lost my health insurance and I don’t know what to do. I have just about all the symptoms of lupus and it’s miserable. Some days I can’t get out of bed. I even have some of the test results needed for a Lupus diagnosis. I don’t understand why it hasn’t been diagnosed yet. I’m not sure who to see next. I just got married and am trying to get insurance again. We may not be able to afford it. It takes so long to see these specialists and after seeing that jerk if a Rhuemetologist, I really don’t want to waste my time waiting to see another one who won’t want to help me either. Any advice?

    1. Hi Teresa!
      Thanks for writing in, being part of the LupusCorner community, and congratulations on your marriage 🎉
      I’m sorry about your challenges with getting a diagnosis. It is an unfortunately common issue. Here’s an article with some additional info on getting to a lupus diagnosis.
      As the right rheumatologist can make all the difference, it may be useful to get a recommendation from your local chapter of the Lupus Foundation of America.
      I hope this helps! and thanks again!

  3. I have SLE and it’s a horrible disease when left untreated. In Michigan there is a doctor who is excellent with autoimmune diseases. He is in Clare Michigan., Dr Khan.

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