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There are certain symptoms that seem obviously linked together: If you have heartburn and regurgitation, the signs point to gastroesophageal reflux disease, or GERD. If you have bad headaches, nausea, and sensitivity to loud noises, odds are you have migraines. But not every health condition has symptoms that are so clearly related, and as a result you may not think to tell your doctor everything you’re experiencing. This can lead to a missed diagnosis, potentially delaying treatment.
Take non-radiographic axial spondyloarthritis (nr-axSpA). While the condition’s trademark sign is lower back pain, it can also cause light sensitivity, skin issues, and GI problems—symptoms that seem like they have nothing to do with one another. Here’s what to look out for so you know what to bring up to your doctor.
The basics of nr-axSpA
To understand what nr-axSpA is, you first have to learn about a disease called ankylosing spondylitis (AS). The inflammatory condition affects the lower back, spine, and sacroiliac joints, which connect the bottom of your spinal column to your pelvis. Nr-axSpA is very similar to AS, with one key difference: While people with AS have spinal changes that are visible on X-rays, those with nr-axSpA do not. That’s because the damage folks with nr-axSpA experience isn’t severe enough to show up on this sort of imaging. Some people with nr-axSpA will ultimately develop AS if enough damage occurs.
Like other inflammatory diseases, including rheumatoid arthritis and lupus, nr-axSpA is the result of an immune system that’s gone rogue. “Your body has an inflammatory process to fight off infections, but sometimes there’s misregulation of your immune system and it starts to attack your body,” explains Chris Morris, MD, a Tennessee-based rheumatologist. “That’s what’s happening here.”
Symptoms of nr-axSpA
The hallmark thing to watch for: pain in your lower back that lingers for months and isn’t linked to an obvious injury. It’s a specific kind of back discomfort called inflammatory back pain, which differs from what you’d feel if, say, you tweaked your back while playing pickleball. “Inflammatory back pain gets better with activity and stiffens with inactivity, so it’s usually the worst in the morning,” Dr. Morris says.
However, what can really point to nr-axSpA is your back pain being accompanied by certain other symptoms. While the following signs may seem somewhat random, they’re all caused by excess inflammation tied to an unruly immune system. This is precisely what’s behind nr-axSpA too.
- Your eyes become supersensitive to sunlight: Some people with nr-axSpA will also have a condition called uveitis. “This is inflammation in the eye that results in bright light bothering you a lot,” says Dr. Morris. “You could also have eye irritation or pain.”
- You have patches of red, scaly skin: Nr-axSpA can also go hand in hand with psoriasis, an inflammatory skin condition. Certain parts of your body, such as the scalp, elbows, and knees, may develop raised, red patches with silvery scales.
- You have gut issues: Some patients may develop an inflammatory bowel disease, or IBD, such as Crohn’s disease or ulcerative colitis. As a result you may experience diarrhea, stomach pain, cramping, or loss of appetite.
Getting the right diagnosis
Since imaging tests show no evidence of nr-axSpA, the condition can be challenging to diagnose. “It’s a clinical diagnosis in many ways,” says Dr. Morris. That means your doctor will need to look for specific signs and connect the dots.
One key clue is the presence of an antigen called HLA-B27, which can be detected through a blood test. But the test isn’t perfect; many people with HLA-B27 don’t have nr-axSpA, and you can have the condition without testing positive for the antigen. That’s why mentioning your physical symptoms is so important: Inflammatory back pain that doesn’t go away and any of the other related signs are indicators that can help your doctor make an accurate diagnosis.
Unfortunately, what often happens is you see one doctor for your vision issues, another for your psoriasis, and you don’t mention your back pain to either. “A lot of patients with IBD won’t get asked by their doctor if they have back pain,” says Dr. Morris. “And so we have patients not recognizing that their back pain may be tied to the IBD.” This matters because a delay in diagnosis can allow nr-axSpA to progress. “The earlier we identify it, the earlier we can get started on treatments that do a fantastic job,” says Dr. Morris.
Adapting to life with a chronic condition
As scary as it can be to hear you have a lifelong health issue—especially one like nr-axSpA with no cure—there are a lot of treatment options that can make a big difference in how you feel and how quickly the disease progresses.
Your doctor may recommend you start physical therapy to preserve the range of motion in your neck and back and may also prescribe nonsteroidal anti-inflammatory drugs, or NSAIDs. These will likely be higher-dose versions of those sold over the counter to relieve pain, like Advil (ibuprofen) and Aleve (naproxen). “If the NSAIDs aren’t working, we start looking at biologic therapies,” says Dr. Morris. These medications help reduce inflammatory activity by binding to different parts of cells or blocking certain pathways involved in causing inflammation.
Not every person responds to medications in the same way, which is why it’s so critical to have a specialist oversee your care, as opposed to a general practitioner. “I’m a believer that you need a rheumatologist to help direct the treatment,” says Dr. Morris. Once you do find the right medication for you, take comfort in knowing you’re on the right path. “We have people who have been on these medicines for years, living a normal, healthy life,” says Dr. Morris.
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