Lupus Diagnosis and Management: 3 Tests That May be Right for You

Girl with a white top and black hat holding her long black hair in one hand.
By Marisa Zeppieri, Founder of LupusChick

One of the worst things to experience in life is feeling
really sick and not having any answers as to what is wrong. Sadly, this is the
reality for so many people who are living with undiagnosed autoimmune diseases
and other chronic conditions. According to the Lupus
Foundation of America,
it takes an average of almost six years for someone
to be correctly diagnosed from the initial onset of their symptoms  – six years of their life and health being
impacted and they don’t know why.

I know how frustrating this is on a personal level. At the
age of 8, my fevers first started showing up randomly. Then at 9 came the
onslaught of mouth and nose sores, which still plague me to this day (but at a
much lower rate). Body pains, rashes, and severe photosensitivity occurred on a
regular basis. Living in sunny South Florida didn’t help things much. But this
was the 80s, and doctors rarely checked for lupus.

While I wasn’t properly diagnosed until I was 23, the good
news is that today awareness is spreading, and better testing is out there.
Which leads me to Exagen. If you have followed LupusChick for a while, you have
heard me mention Exagen a lot.

I first connected with Exagen a few years back and was able
to visit their laboratory and research and development site out in California.
I was also able to try their testing kits. Two things immediately stuck out to
me – first, only 2 tubes of blood (not 10 or more) were needed for their AVISE® CTD, a
test used to diagnosis different rheumatologic diseases like Lupus. Second, the
test result sheet was different than traditional results, more comprehensive
and easier to understand.

In addition to their diagnostic tests, they also have
monitoring tests – perfect for people who have already been diagnosed with
lupus. So, depending on which side of that fence you are currently on, let’s
take a closer look at which test might be right for you:

Test 1 – The AVISE CTD Test: Testing for Lupus and Other Rheumatological

A photo of the AVISE CTD test by Exagen that tests for lupus.
The AVISE CTD testing kit by

If you are being tested or about to be tested for Lupus, you
will want to learn more about the AVISE
CTD test
. It is the only diagnostic test on the market that is powered by
Exagen’s patented CB-CAPS biomarkers. These biomarkers offer a 22% greater
sensitivity as compared to traditional C3/C4 tests and the SLE panel contained
in the AVISE CTD test offer a 48% greater sensitivity compared to traditional
anti-dsDNA tests your doctor will most likely run. What this means for you is a
more accurate test and better answers.

The AVISE CTD test doesn’t just test for lupus. It will also
help your rheumatologist learn if you test positive for other diseases such as rheumatoid
arthritis blood markers, thyroid disease, and antiphospholipid syndrome, which
can share many of the same symptoms as lupus. 

So, who should have the AVISE CTD test done?

  • Anyone being referred to a specialist because
    they had a positive ANA
  • Patients who have a clinical suspicion of some
    type of connective disease but don’t have enough of the initial diagnosing
  • Patients exhibiting vague symptoms that overlap with
    other conditions
  • Patients diagnosed as having undifferentiated
    connective tissue diseases UCTD
  • Fibromyalgia patients with positive ANA’s who
    have clinical suspicion of an underlying autoimmune disease

I wish this test was around when I was young – I would have
likely had much faster answers and could have been treated sooner! If you are
experiencing symptoms, you may be wondering how you can get this test. Click here to call or email Exagen
about the AVISE CTD test and they will mail a kit to your physician.

Test 2 – The AVISE SLE Monitor: Management of Lupus after A Diagnosis

Test result sheets for the AVISE SLE monitor test for people who have lupus.
The AVISE SLE Monitor Test by

So the next test I want to tell you about is a test for
anyone who has already been diagnosed with Lupus by his or her physician. When
you live with this disease, you typically have an idea of when a flare is
occurring because symptoms can worsen, but did you know that disease activity
can be abnormal or higher way before we actually feel any symptoms? And, if
disease activity is unusual or higher than normal, that is when damage to our
organs can occur.

The AVISE SLE Monitor test can help you and your doctor
regularly track your disease’s activity level, making you aware of
abnormalities possibly before symptoms begin to show up, and helping you
prevent damage to your body.

So, who should have the AVISE SLE Monitor test?

Anyone who has been diagnosed with Lupus and is being
assessed by a physician.

You can learn more about the test here, or click here to call or email Exagen
and get the testing kit sent to your physician.

Test 3 – The AVISE HCQ: Monitoring Levels of Plaquenil® (Hydroxychloroquine)
in the Body

Woman holding a pill in her hand.
The AVISE HCQ test by

The last test I want to share is for anyone currently taking
Plaquenil (hydroxychloroquine) for at least 90 – 120 days. It is called the
AVISE HCQ test and it measures the level of the drug in your blood.

It is important to know how much of this drug is in your
blood because people with low levels are shown to have a 4X increase in flares. The measurement will also tell your doctor
if you are at risk for a flare or potentially at risk of over exposure, which can
help him or her adjust the medication so it is at the right level for your

You can learn more about the AVISE HCQ test here, or email or call Exagen
and request this kit by clicking here.

Exagen can also share more information regarding costs,
insurance, kits for self-pay patients with lower income, etc.

No one wants to hear they have lupus, however, I am grateful
we live in a day where technology is available to us and more tests are at our
disposal to not only get a diagnosis, but to also monitor how our medications
are working and if a flare is potentially on the horizon. Exagen’s motto is
“everyone deserves the dignity of a correct diagnosis” and I couldn’t have said
it better myself.

Have you ever tried any of the Exagen tests? If so, we would love to know more about your experience and which test(s) you have tried. Reach out via the comment section below!

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