Testing, Testing, 1, 2, 3
“Well, your tests look good.” I don’t know how many times I’ve heard this, but if I were to take a guess I’d start by multiplying the 14 years since my diagnosis by the average of four routine visits I make a year to the rheumatologist, and that would give me a pretty good estimate. I know doctors rely on tests. Doctors are scientists, and scientists test their hypotheses for findings. That’s all well and good, and can often be very helpful. However, tests are only as good as humans are capable of making them, and that means that many tests for health conditions are not 100% reliable.
Until a year ago, I never “tested positive” for rheumatoid arthritis. When I was diagnosed, I did not have high levels of rheumatoid factor, a high SED rate, nor elevated levels of c-reactive protein. On paper one would never know that I had an autoimmune disease, let alone a specific diagnosis of RA. However, while I looked good on paper, my physical appearance was a different matter. My fingers were so swollen the skin cracked, I had three nodules present on my hand joints, and many joints throughout my body were tender to the touch. Therefore, a physical exam gave my rheumatologist far more helpful information than my test results did. This was also the case for self-report. I knew nothing about RA at the time of my diagnosis, and didn’t even really know what rheumatology was. As my doctor asked me questions about whether I had stiffness, and if there was a time of day the stiffness was worse, I had no idea what a common component of RA morning stiffness was. Looking back, I see that I was a textbook case of RA, except when it came to the test results. My rheumatologist felt confident in his diagnosis based on physical exam, self-report, and x-rays, and explained to me that a minority of people with RA do not show abnormal lab results.
In spite of that, he continued to run labs at each visit, just as the next two rheumatologists I’ve had have done. Whether I’m feeling pretty good or in the midst of a terrible flare, my bloodwork never indicates the level of inflammation that a physical exam detects. I don’t know whether doctors think they are sharing good news with me when they cheerfully report that my test results from the previous visit “look good.” I don’t care about the test results; I care about how I feel. If I’m contending with pain, swelling, stiffness and fatigue, it is no consolation to hear that my labs look good. Having routine blood tests has felt like a waste of time, discomfort, and money, considering that their findings are in such stark contrast to how I feel. Therefore, when my rheumatologist asked me about a year ago whether I’d like to have the new Vectra test performed, I was ambivalent. Considering that it was unclear whether my insurance would cover it, I was hesitant. I also had my doubts that this test would be any different than the other tests that had been run for years. However, I told my doctor that if she thought the results would be helpful to her in treating me, I was willing to go ahead with it.
At my next visit, she produced a packet containing my Vectra test results. The Vectra test measures 12 different biological markers to arrive at a score of RA disease activity that ranges from 1-100. On this scale, a score of 1-29 is considered low activity, 30-44 is moderate activity, and 45-100 is high activity. My number on the day of my Vectra test was 39. For the first time in my life with RA, I had lab work that indicated exactly how I felt.
Being able to look at that number did not change the way I physically felt, nor did it change the way I felt about having RA. It didn’t even change my doctor’s course of treatment, as she had already determined that I was at a moderate level of disease activity at that point in time. Yet, it definitely affected my perspective on testing and research. Finally, humans had developed a test that could measure my disease activity. While this hasn’t had any real ramifications on my life, it does make me feel hopeful for potential medical advancements. If researchers have been able to create a test that accurately measures my disease activity, maybe they’ll eventually be able to create a treatment that cures it. This test is a baby step toward the realization of my most powerful RA wish, but even a baby step toward a cure is significant when it’s a step in the right direction.