There’s so much misunderstanding about ankylosing spondylitis (AS)—a chronic and incurable form of inflammatory arthritis that primarily targets the spine—that it can take eight or more years to get a diagnosis. That’s a problem for the 1.1 million people in the U.S who have AS because research shows that those who are diagnosed within two years of developing symptoms are more likely to achieve remission and have a better long-term prognosis. When diagnosis is delayed symptoms tend to be more severe, and people with AS don’t respond as well to treatment. This causes their disease course to worsen, limiting day-to-day functioning and mobility.
So, why does it take so long to get answers? “AS usually begins as lower back pain in young adults,” notes Ronald Rapoport, M.D., chief of rheumatology at Southcoast Health in Fall River, MA, “but lower back pain in young, otherwise healthy individuals is often overlooked. Both patients and their primary care providers often assume they just did something playing sports, or whatever, and it will get better.” But with AS, it doesn’t. Red flags that what you’re experiencing isn’t just the result of wear and tear include pain and stiffness that:
- Is insidious, meaning it comes on slowly and persists for at least three months
- Is at its worst first thing in the morning and improves with activity and exercise during the day
- Wakes you in the middle of the night and keeps you awake unless you get up and move around.
Whether you’re searching for the right diagnosis for your symptoms, or trying to process a new diagnosis of AS and what it means for your future, we’ve got you. Wise up about these five myths so you can advocate for the best possible treatment—and get on with your life.
Myth 1: AS Is a Man’s Disease
Fact: This fallacy may have done more to prevent women from getting the diagnosis and treatment they need than any other. Until the last few years, AS was believed to affect men three times more often than women—and, technically, that’s still not entirely wrong. Classic ankylosing spondylitis is typically confirmed when an x-ray picks up visible erosion in the lower spine and sacroiliac (SI) joints, which connect the spine to the pelvis. This type of inflammation-related damage continues to be more frequently diagnosed in men, notes Joseph Martinez, M.D., a rheumatologist in Austin, TX.
But experts have come to understand that not everyone presents with these classic signs—and that symptoms can exist for a long time, even decades, before damage appears on imaging tests. So, the definition of AS has been expanded to include a broader family known as axial spondyloarthritis. This new category considers more peripheral symptoms, which may be the first sign of the disease in many women. “It’s not uncommon for uveitis—inflammation of the eye that can accompany AS—to occur in women before back pain,” notes Dr. Martinez. Some research also indicates that women may have more pain in their neck or peripheral joints, such as the knees and ankles, than men do, and they may be more likely to have other related conditions such as psoriatic arthritis or inflammatory bowel disease (IBD).
When this broader definition is taken into account, the true ratio of men to women with AS appears to be closer to 1:1. “Rheumatologists now know to look for a broader range of symptoms and not to dismiss female patients if they don’t fit the classic definition,” notes Dr. Rapoport, “but a primary care doctor or an eye doctor may not, so it’s important to get to the right specialist.”
Myth 2: Only White People Get It
Fact: “Population studies do show that the highest prevalence of AS occurs in Caucasians and that the lowest rate is in African-Americans,” notes Dr. Martinez, “but anyone, of any race or ethnicity, can develop AS.”
AS is most commonly seen in Northern European whites as well as certain Native American tribes in the western U.S. and Canada. However, research shows that other ethnic groups may have a worse prognosis than Caucasians. African-Americans have higher levels of disease activity, greater impairment, and more visible damage on imaging tests. Latinos may also have more severe disease than whites, and the less common juvenile onset version of AS is more common among Native Americans, Mexicans, and people who live in developing countries. With that said, it’s clear than all ethnicities can get AS.
Myth 3: There’s a Genetic Test That Confirms AS
Fact: We know there’s a genetic link to developing AS, and it does run in families, but experts believe there are also environmental triggers that help to “turn on” the disease.
A number of genes have been linked to AS, with the most common one being the HLA-B27 gene. However, the presence of this gene alone is not diagnostic. HLA-B27 is a normal gene found in 8% of the Caucasian population, most of whom will never develop AS. Overall it’s estimated that no more than 2% of people with the HLA-B27 gene will develop AS, but this association also varies among racial and ethnic groups. About 90% to 95% of Caucasians with AS will test positive for HLA-B27, whereas about 80% of AS patients from Mediterranean countries will test positive, and only about 50% of African-Americans with AS do.
Because of this, testing for the HLA-B27 gene (via bloodwork) is important when AS is suspected. The presence of this gene is another piece of the puzzle (along with symptoms, imaging tests, and other inflammatory markers) that, taken together, can help confirm a diagnosis. “If you’re seeing your primary care provider about persistent lower back pain that’s not easily explained, ask to be tested for the HLA-B27 gene and referred to a rheumatologist for further investigation if you’re positive,” advises Dr. Rapoport. Bottom line? Your genes are a single factor—and not the only clue—that can help determine whether or not you have AS.
Myth 4: If You Have AS, You Can’t Take NSAIDs
Fact: While there is some risk of abdominal pain or gastrointestinal bleeding, yep, you probably can take these OTC medications—IF you work closely with your rheumatologist. NSAIDs (nonsteroidal anti-inflammatories such as ibuprofen, naproxen, and aspirin) are the first-line treatment for AS, along with exercise to strengthen the muscles that support the spine and other affected joints, helping you maintain function and mobility. In fact, some people are able to manage their disease for a very long time with just these inexpensive options.
“There are risks you need to be aware of, but if you’re otherwise healthy you can take NSAIDs long-term under the supervision of your doctor,” notes Dr. Martinez. “We look at it on a case-by-case basis. People who shouldn’t do this include those with cardiac and kidney issues, as well as IBD, which is aggravated by NSAIDs. Antacids can also be used to help protect the stomach lining and minimize GI problems—the most common side effect—in some people.”
Dr. Rapoport concurs: “When a patient has NSAID side effects, we can switch them to a lower dose, prescribe them every other day, or have people take them for, say, five days and then go off for two days. As long as they’re helping and your inflammatory markers in your bloodwork aren’t going up, there’s no reason to advance treatment.” So, go ahead and take the NSAID that works best for your symptoms—but only after you get your doctor’s clearance first.
Myth 5: You Won’t Be Able to Stop the Pain and Long-Term Damage of AS
Fact: If NSAIDs don’t provide the relief you need, the next step is biologic medications known as tumor-necrosis factor (TNF) inhibitors, such as Humira (adalimumab) and Enbrel (etanercept). These breakthrough drugs do typically help AS patients with pain that hasn’t been well controlled by NSAIDs and exercise, but their long-term benefits as far as limiting structural damage is still debatable.
“With other inflammatory illnesses such as rheumatoid arthritis, biologics have been proven to minimize disease progression and we don’t see bad deformities anymore, but we don’t yet have the evidence that these meds do the same for AS,” explains Zeeshan Sarder, M.D., an orthopedic surgeon who specializes in spinal conditions at Columbia University and New York Presbyterian Hospital in New York City.
Plus, TNF inhibitors have their own side effects (suppressing your immune system and making you more vulnerable to infection is a biggie), are more expensive, and less convenient because they have to be given either by injection or infusion. They may also lend a false sense of security: “It’s not uncommon for us to switch someone to a biologic because NSAIDs have lost their effectiveness, and they feel so much better they try to do something they shouldn’t and end up with fractures because their bones are still weakened by AS,” adds Dr. Rapoport.
Myth 6: AS Will Leave You Hunchbacked
Fact: You can absolutely avoid this scenario—and the vast majority of people with AS today never reach this stage. The backstory: The term ankylosing refers to the formation of additional bone mass in the spine that fuses with the ligaments and joints. This happens over many years—literally decades—as a result of the reoccurring process of healing and repair after inflammation. In worst-case scenarios, the spine can permanently fuse in an immobile forward-curving position, leading to stooped posture known as kyphosis (yep: a hunched back).
“All patients will develop some level of fusion—usually in the SI joints at first, and it may travel up the spine,” notes Dr. Sardar, “but it can take 20 to 30 years to reach the lower (lumbar) spine and even longer to impact the complete spine. It’s rare now that AS progresses to the point that patients become so disabled that they require surgical correction, and that’s not until they’re in their 60s and 70s.” People with AS are more likely to require surgery because they fracture their unstable spines, or need hip or knee replacement to improve their mobility. “Patients who do get to the kyphosis stage may have gone underdiagnosed for a long time, or they were misdiagnosed,” notes Dr. Rapoport. “In short, we haven’t done our job well enough.” So put away all outdated notions of Quasimodo: Very, very few people with AS in modern times go on to develop a hunched back.