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 Diseases
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 criteria/symptoms
- 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
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.
Test 3 – The AVISE HCQ: Monitoring Levels of Plaquenil® (Hydroxychloroquine) in the Body
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 size/sex.
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!