5 Things I Tell Patients About Staying Strong With AS
A diagnosis of ankylosis spondylitis—an incurable form of arthritis—can be overwhelming. Here are tips from a top specialist for living well with disease.
Ankylosing spondylitis (AS), a form of arthritis that mainly affects the spine, is a chronic condition that can’t be cured—but it can be managed, says Terence Starz, M.D., clinical professor of medicine and occupational therapy in the division of rheumatology and clinical immunology at University of Pittsburgh School of Medicine in Pittsburgh, PA. So, don’t settle for just surviving, he urges—not when thriving is in within reach.
Still, it can be hard to know where to start when you’re first faced with such an overwhelming diagnosis, even as you’re trying to manage chronic pain and other challenging symptoms. Here, Dr. Starz offers his top five tips for how to stay strong and take control of your AS:
Make Sure You Have the Right Diagnosis
When you’re dealing with pain, you just want it to stop—and fast. But sometimes getting answers to what is actually causing that pain can take longer than you’d like.
For some people with AS, that process can take years, according to the nonprofit CreakyJoints. “Pain is really the cardinal manifestation of rheumatic disease,” Dr. Starz explains. “There are over 100 named musculoskeletal problems, so number one is to be sure that we make the right diagnosis.”
If your symptoms raise flags that you may have AS, it’s important to confirm that diagnosis with a rheumatologist, and not just your primary care doctor, according to the Spondylitis Association of America (SAA)—and ideally with a rheumatologist with lots of experience treating this relatively rare condition, which affects just 1 in 1,000 people in the U.S. To lock down AS as the true culprit, your rheum will typically give you a physical exam, inquire about your family and medical history (since AS can have a genetic connection, per Harvard Health), take X-rays, and do blood tests.
Even after your doctor’s confirmation of AS, it’s not uncommon for some people to not fully understand what exactly this disease is, says Dr. Starz. And, that’s not all that surprising—AS can be really confusing. “But understanding the exact nature of the problem is critical when making decisions about management,” he adds. So, don’t be afraid to ask your doctor questions—learn all you can about how the disease is affecting your body and causing your specific symptoms.
Take Control of Your AS Treatment
While your health care team may have AS expertise, it’s you, the patient, who should be steering the ship, advises Dr. Starz. “I tell my patients that it’s important to feel like they are in charge—they are the captain, the doctors are the navigators, and other significant people in their life are the first mates,” he says. Feeling like you’re in control is crucial when working towards affective treatment for AS.
Science backs this up: Feeling in control—a.k.a., believing that you can make positive things happen—actually changes your brain chemistry and helps you build a positive attitude toward things like your treatment and overall health, according to the Arthritis Foundation.
So get comfortable in that captain’s chair—and make sure your rheumatologist is someone you trust in the key navigator position to help guide you along the way, Dr. Starz suggests.
Educate Yourself About AS
Learning as much as you can about AS is one major way you can start to feel more in control of your condition and treatment, says Dr. Starz. Doing the necessary research on AS is definitely encouraged, whether that’s coming to appointments with a prepared list of questions for your doctor or finding reputable online sources to research information about your condition, such as academic or government institutions (be sure to look for that .org or .edu URL)—but beware of going too far down the rabbit hole of Dr. Google, Dr. Starz warns.
“I emphasize to patients that learning about AS can take some time and it can be challenging. An analogy I use about finding AS information on the internet is that it’s like trying to drink water from a fire hose—it can become overwhelming,” Dr. Starz explains. “But there’s a lot of really great information out there, particularly from the Arthritis Foundation.”
When in doubt, double-check any info you find online with your doctor—and don’t try to learn everything all at once, he adds. Adjusting to a diagnosis with a disease like AS takes some time, and the learning process is ongoing.
Understand Your Own Unique AS Symptoms
Another important way to feel in control of your AS is to get familiar with, and understand what’s driving, your own specific AS symptoms, says Dr. Starz. That’s because yours may be radically different from the AS patient sitting next to you in the waiting room. Honing in how your body specifically reacts to AS can help you feel empowered and guide you in making the right treatment decisions.
“With AS, there are very diverse manifestations, not only within the musculoskeletal system but other areas, too,” says Dr. Starz. While there are parts of the body that are most commonly affected by AS—like the sacroiliac joints in the spine—it’s important to know that AS inflammation can also target the entheses (which attach ligaments to the bone) and even the eyes, explains Dr. Starz.
“You need to understand all of these affected areas because they can be distressing, as well,” he says, advising you to work with your health care team to be prepared in advance about which parts of your body potentially could be affected by AS inflammation.
Know That There Are Great Medication Options
There’s no doubt that receiving the news that you have an incurable chronic illness can be incredibly jarring. But one thing Dr. Starz always stresses with his patients is the high caliber of treatments available to help you live your life the way you want to despite your condition.
“We have very good treatments for AS, but one of the great challenges is to determine what the best treatment is for a particular individual,” says Dr. Starz. “That’s because different people respond better to certain treatments.”
That said, one of the most effective treatments is nonsteroidal anti-inflammatory drugs (NSAIDs)—yep, good old-fashioned ibuprofen (Advil or Motrin are both familiar examples) and/or naproxen (Aleve is a good representative of this category) that you can get over the counter, says Dr. Starz. “In fact, they are so helpful that one of the criteria for moving on to additional treatments is that the patient has not had a sufficient response to the nonsteroidals, or has had side effects,” he explains.
So, if you don’t do well on NSAIDs (maybe you have gastrointestinal problems, or they just don’t manage your pain), there are other medication options, per the SAA. These range from steroids to reduce inflammation (although these are more of a short-term solution due to the potential side effects) to biologic drugs—a.k.a. drugs made from living organisms that target the immune system to block inflammation.
“There really has been a great revelation now that we have great medications like biologics, but not everybody needs them,” says Dr. Starz. “And that’s why your relationship with your health care professionals is so important to figure out what the best treatment is for you.”
- What Is AS?: Harvard Health Publishing. (2019.) “Ankylosing Spondylitis: What Is It?” health.harvard.edu/a_to_z/ankylosing-spondylitis-a-to-z
- What to Expect During AS Diagnosis: Creaky Joints. (2018.) “How Doctors Diagnose Anklyosing Spondylitis: What to Expect at the Rheumatologist.” creakyjoints.org/doctor-patient/how-ankylosing-spondylitis-is-diagnosed/
- How AS Is Diagnosed: Spondylitis Association of America. (2021.) “Diagnosis of Ankylosing Spondylitis.” spondylitis.org/about-spondylitis/types-of-spondylitis/ankylosing-spondylitis/diagnosis/
- Taking Control of Your Arthritis: The Arthritis Foundation. (2021.) “New Arthritis Diagnosis: Take Control.” arthritis.org/health-wellness/healthy-living/emotional-well-being/emotional-self-care/new-arthritis-diagnosis-take-control
- AS Treatments: Spondylitis Association of America. (2021.) “Treatment of Spondyloarthritis.” spondylitis.org/about-spondylitis/types-of-spondylitis/ankylosing-spondylitis/treatment-ankylosing-spondylitis/