Nearly 2 million Americans are living with rheumatoid arthritis (RA), and the disease affects women two to three times more often than men. RA starts in the immune system and is part of a group of diseases called autoimmune diseases, which occur when the immune system mistakenly identifies healthy body tissues as foreign and destroys them.
In the case of RA, joints—and especially the smaller in the hands and feet—are primarily affected, but the disease can also have an impact on many other parts of the body, including the heart, lungs, and blood vessels. When the lining of the joints—also referred to as the synovial membrane—becomes inflamed, resulting in pain, swelling, and redness in affected joints, cartilage and bone can wear away, increasing pain in affected joints and eventually leading to disability.
For some, loss of joint or bone material develops gradually over several years, whereas others may progress rapidly. Some patients may have severe inflammation with little or no loss of joint or bone material; others may have a loss of bone or joint material with only limited inflammation visible through clinical exam. Because we all have unique cells that compose our immune systems, RA affects people in different ways. Though each person diagnosed with RA will be uniquely affected, all patients can benefit from new approaches to monitoring the progress of the disease.
Better Tools, Better Outcomes
Before the advent of the thermometer, mothers would check their children for fever by holding a hand against the child’s forehead to sense whether or not the child’s skin was warmer than their own. If it was warmer, mom would assume the child had a fever, and certain steps would follow that included bed rest and fluids. Later she would feel the child’s head again, and then she would perform an interesting calculation: does the forehead feel warmer, cooler, or the same as it did when she checked them the first time?
Now, accurate, cheap, and precise digital thermometers have replaced mom’s hand, and caregivers can be sure of actual body temperature; and by repeating the procedure at appropriate intervals, they can truly assess if the fever is getting better or worse over time. The additional clarity provided by these simple home thermometers has hugely improved the quality of a mother’s assessment—and made the hand nearly obsolete as a tool for determining body temperature.
Rheumatologists are about to benefit from an advance that, like the thermometer, will transform the way a patient’s disease is monitored. Today when patients with RA are routinely assessed by a rheumatologist, guidelines from the American College of Rheumatology recommend that an assessment of disease activity—meant to capture the inflammatory processes that go into overdrive as the disease progresses—be performed at every office visit. Basing an assessment of disease activity on clinical signs and symptoms reported by individual patients is an art that rheumatologists master to make sense of a complicated clinical picture.
To measure disease activity, rheumatologists look at a variety of inputs—including feeling your joints with their hands and asking you questions to understand if they are swollen and/or tender, asking you for your opinion of your disease activity, looking at blood tests and sometimes combining these inputs into a single score. These assessments and combined scores, or indices, are useful, and your doctor has undergone many years of training to develop the skills and the experience required to perform them and assign values to your RA disease at any point in time. These approaches do have some limitations, however.
While signs and symptoms are critical, their assessment is based on subjective observation and therefore involves some variability. Just as every person living with RA has individual disease biology, each person also has a different set of experiences and tolerances that can affect how he or she assesses symptoms.
For example, it’s very difficult to tell when my daughter has a low grade fever. Both my husband and I feel her forehead, but we don’t always agree about whether or not her skin feels warmer than our own. When she had a 103 degree fever, however, we could both easily tell when her fever broke. What this means is that big changes can be easy to recognize by two different people, but smaller changes can go unnoticed.
The signs and the symptoms of RA that you and your rheumatologist assess are ultimately driven by the biology of your individual disease. While some information is known about your RA disease biology, many changes are not visible to rheumatologists today: the existing tools allow the tracking of only basic laboratory measurements—like C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR), which capture only a portion of the biology that can lead to RA disease activity.
On the Horizon
Recent advances from the Human Genome Project have led to the introduction of new ways to diagnose and assess many diseases, including breast cancer and heart disease. These same kinds of advances will soon lead to the introduction of new tools that will allow rheumatologists to assess and track the progress of RA for individuals much like the digital thermometer did when it became widely available in the 1980s.
These new tools include lab tests that can measure multiple proteins in the blood at once, combining those values into a single score that you and your rheumatologist can use to manage your RA. These tests are first validated in clinical studies to ensure that they accurately reflect the activity of RA so that you and your rheumatologist can be confident of what the score means. Once available, the test can be repeated and the scores can be tracked over time to reveal the actual trends of the underlying disease at a level of biology that was previously hidden from rheumatologists.
By providing rheumatologists with this new level of insight, these advanced lab tests will allow a more complete assessment of RA disease activity to help guide the management of the disease. Even small changes over time will be easy to see. Rheumatologists already know that no patient is “average”; now they will have additional tools to more fully understand each person they treat and develop personalized therapy plans.
In addition to new tests for RA disease activity, researchers are working steadily to develop tools to improve the understanding of other aspects of RA, including the following:
What is the likelihood that RA is starting to damage my bones and joints, even if I can’t see it on an X-ray?
Am I at higher risk than other RA patients for heart disease?
Which medicine would provide me with the greatest benefit?
Is my disease really in remission?
Can I safely reduce or eliminate my current medication?
If I am in remission and my dose is reduced or eliminated, can my disease be monitored so I know if my disease is coming back before I have a flare?
Do I have the kind of RA that progresses quickly or a type that develops more slowly?
These are all examples of future questions that researchers in this field hope to answer by developing new tests over the next decade. Once these tests become routinely available, rheumatologists will have a panel of powerful tools that will enable them to understand and treat all RA patients as the individuals they are.