When John Cush, MD, started treating people with rheumatoid arthritis (RA) in the 1980s, doctors considered the disease to be caught early if they diagnosed it up to 8 years after patients first noticed their symptoms.
“Eight years!” says Cush, a rheumatologist at UT Southwestern Medical Center in Dallas. “That’s an atrocious definition today.”
By a decade ago, the average time to diagnosis had fallen to less than 3 years. Now, thanks to better research and education for both doctors and patients, that window has shrunk to just 6 months.
Yet that’s still too slow.
“It’s a heck of a heck of a lot better than 10 years ago,” Cush says. But even today, “the average person is not getting diagnosed early enough.”
Research shows that in some cases, RA may lead to joint damage in as little as 12 to 16 weeks. That’s why it’s so important to get to a specialist who can diagnose your RA and start you on the right treatment plan.
But baffling symptoms, lack of definitive diagnostic tests, long waits for specialists, and other hurdles can sometimes get in the way.
The three hallmarks of a joint with RA sound deceptively simple: painful, tender, and swollen.
But without an RA specialist, says Stanford Shoor, MD, clinical professor of medicine and rheumatology at Stanford University, the path to a correct diagnosis can be anything but straightforward.
For example, RA can look like osteoarthritis, a far more widespread condition that stems from mechanical wear and tear instead of the faulty immune response that causes RA. Or it could mirror the symptoms of carpal tunnel syndrome, which is usually triggered by repetitive motion, or of lupus, another autoimmune condition.
Recent injuries or viral illnesses, like a cold or flu, can cause RA-like pain and swelling in the short term. That’s why, in order to rule out these causes, the American College of Rheumatology requires 6 weeks of symptoms to make an RA diagnosis.
And even if many of your lingering symptoms point to RA, “It doesn’t mean you have it,” Shoor says. “It just means you should see a rheumatologist.”
On the flip side, any nagging joint pain could turn out to be RA, even if it’s not in a common spot.
Cush, of UT Southwestern, once saw a patient with long-term pain in the thumb at the joint closest to the thumbnail, which for RA is highly unusual.
“She evolved over a year into someone who had six or more swollen joints and ultimately had very severe rheumatoid arthritis that required surgeries.” Earlier diagnosis and treatment, Cush says, may have spared her severe damage.
Primary care doctors, often the first stop for patients, also may delay a diagnosis, especially if they don’t see a lot of RA. That could waste valuable weeks.
And by the time your doctor finally sends you to a specialist, you’re likely in for another long wait. A nationwide survey found that it takes an average of almost 45 days to get a first appointment with a rheumatologist. That was far longer than any other specialty and 2.5 times the wait to see a cardiologist.
Another problem is that some people simply don’t seek help early enough, Cush says. They may put off visiting a doctor, self-treat with over-the-counter pain relievers, or dismiss their symptoms as normal aging.
That delay could be costly, Cush says. In 40% of cases, RA causes work disability of some type within 10 years of diagnosis. And research shows the ideal “treatment window” for RA seems to be within the first 3 months.
“Patients who are treated earlier are less likely to have joint surgery. They’re less likely to have disability,” Cush says. “They’re less likely to be hospitalized later on in their disease.”
Certain benchmarks can help you and your doctor figure out if you have RA, says Shoor of Stanford. The first is simple: Do you have pain in one or more joints?
The second is tenderness. That means pain when you move or push on a joint. “You can test this yourself,” Shoor says. “Press on the finger joint with the other hand and see whether it’s tender. Normally it shouldn’t be.” For bigger joints, like the knee, move it in the normal range of motion to see if it hurts more.
The location of the joints also matters. The three most common ones for RA are the wrist, the elbow, and the knuckle where each finger meets your hand (metacarpophalangeal, or MCP, joint).
That doesn’t mean you can’t get RA in other joints. But problems in those joints, along with in your ankle, are more likely to suggest RA, in part because they’re rarely affected by osteoarthritis.
In contrast, Shoor says, symptoms in the knee, shoulder, or middle joint of your finger (proximal interphalangeal) could point equally to osteoarthritis or RA.
The number of joints involved is another clue. RA usually hits more than four. And its symptoms tend to be symmetrical. That means if your right index finger is swollen, tender, and painful, you likely will have similar symptoms on the fingers or wrist on the opposite side.
But the most telling symptom may be any unexplained joint pain that persists for weeks. If you notice that, it’s likely time to talk to a doctor, ideally a rheumatologist.
In fact, Shoor says, talking to your doctor may be the most beneficial thing you can do for RA, even after your diagnosis.
Research shows that successful long-term RA treatment has little to do with fancy imaging or biomarkers or blood tests. The key factor is something far simpler: Good communication.
These studies show that visiting your doctor more often and constantly adjusting your medication is pivotal for managing RA. Lab testing, no matter how cutting-edge, has surprisingly little effect, both Cush and Shoor say.
This research has led to new treatment guidelines that doctors call “treat to target,” or T2T, where you set a treatment goal based on pain levels with your rheumatologist and then work closely together to make it happen. This is now the standard approach for many rheumatologists.
In fact, Shoor says, one of the most powerful weapons against RA may just be yourself.
