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 (24)

24 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!

    2. Hi. I am going thru the same things with Dr’s. I don’t know why they are so arrogant and unhelpful. We are the ones Eugene putting out faith and hope in thier help. I’m thinking I hand lupus but am waiting for a descent Dr to help. I have chronic pancreatitis, EPI and an IPMN. NO ONE CAN HELP ME. I’VE HAD MUSCLE issues. My tendons in my body and muscles are so painful. Everyday same thing some days I cannot get out of bed.. I do not know why Dr’s are like this. Anything I have learned about lupus is on the internet and other people’s stories. It’s so frustrating. It’s like these Dr’s look down on us for being sick. Somehow it is our fault

  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.

    1. Yes, my daughter first results were negative and she had the perfect butterfly rash following a sunburn and when we got biopsy done from dermo they diagnosed her. Every blood test after that showed sle.

  4. Its because i have lupus and my teeth is like braking little bye little i been to many dentists and wht they need to fix my medical doesn’t covered what can I do

  5. I am a 52-year-old woman. I have widespread pain in hips and legs and upper back, shoulders, upper arms. I had an IFA ANA that came back as 1280 Homogenous. I then had an ANA Comprehensive Panel and that was all negative. I have 2 sisters with lupus and mother with rheumatoid arthritis. I need pain relief but I don’t think I’m high on anyone’s list of priorities. Can the IFA ANA be that high with symptoms but not have lupus?

  6. After 6 years of unexplained fevers and a variety of other symptoms, I was finally referred to an immunologist at the University of WI Hospital. All of my ANA tests had been negative before this so I was told for many years that my problem was post partum depression! I am a physician (MD) and still my fevers and symptoms were overlooked until I saw the immunologist. He tested many more things than ANA and it turned out I had a high titer of Anti Cardiolipin Antibiodies. He said this was similar to having an elevated ANA and could represent SLE (Lupus) or vasculitis, and he thought I have a chronic, low grade autoimmune disorder of one or the other (or both). So please keep in mind that it doesn’t have to be ANA for dx.

  7. I have been diagnosed with RA but not sure I have it. I have ulsers in my mouth blisters on my tongue I feel like I have blisters or ulsers in my throat. My gums hurt so bad like they have been burned. Ulcers in nose as well. My hands swell every night pain throughout my body. I get hot then cold. I also have fibromyalgia. Could I have lupus?

    1. Doesn’t necessarily mean you have an autoimmune disease. It could be a false positive, or possibly you were having some sort of viral infection at that time. Get re checked and see

      1. If you have no symtoms why was your ANA checked? Mine was positive for years from hashimoto’s disease. There are many reason and sometimes none. Good luck

  8. I haven’t had my tests yet, I have a tell -appointment on Monday but I’ve had all my the symptoms for years, thinking it was so many other things until recently when my shoulder to wrist starters with a sharp pain, giving spasms and tremors. I’ve had a fever off an on weirdly and a rash on my hand of the same arm. Now looking it all makes sense. Can I be diagnosed without the tests?

  9. I think I may have lupus but my test was negative. I have extreme pain all over my body, headaches, diarrhea and nausea that lasts for a few days. The pain is so bad that the last episode raised my blood pressure to 153/135. I feel like there is a metal sensation between my joints. After my symptoms subside, every joint in body cracks and pops. I only have these symptoms in the summer and I think they are triggered by eating anti-inflammatory foods like: watermelon, blueberries, strawberries, cinnamon, spinach, apple cider, tea and coffee. I’ve had these symptoms since I was nine. If anyone can point me in the right direction to find a diagnosis I would really appreciate it!

  10. I had two Doctors order tests within 5 days. In one set so had a positive ANA IFA in the next a negative ANA IGg what does this mean?

  11. I recently had an ANA test showing a titer of 1:160 and an ANA pattern as homogeneous. I have suffered from joint pain for sometime now, but no fevers or rash. RA was ruled out. But I’ve read that a 1:160 could also mean nothing. I’m patiently waiting to hear back from my Dr.s office about it. I was just wondering if anyone else has had this same reading and it was nothing. I need some reassurance.

  12. I would like feedback on your thoughts about my lab tests. I have hoshimitos’s, as years ago. I have severe fatigue, joint pain in hands that wakes me up at night, somewhat manageable during day. Brain fog, forgetfullness, unable to get a full cleansing breath to name a few.
    Tests: ANA- Positive- speckled-1:320
    RA- positive
    RE Semi quant – 40
    SS-A & SS-Ar strong positive- 89

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