Non-Radiographic Axial Spondyloarthritis Patient Journey Ricky White

This story was told to CreakyJoints by Ricky White, a 37-year-old freelance developer, writer, teacher, and stay-at-home dad who lives in northern Virginia with his wife and two children. He’s president of Walk AS One, an all-volunteer organization that mobilizes and motivates a global community to raise awareness and address the challenges of those affected by ankylosing spondylitis and its family of related diseases. Ricky is a second-degree black belt in martial arts, a discipline that helps him manage his condition, and a bonsai tree enthusiast.

Here is Ricky’s story of what it took to get diagnosed with a disease that essentially did not even have its own name at the time — and his tips and encouragement for others going through a similar journey.

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Back in 2007, when I was 24 years old and working as a registered nurse, I started having lower back pain. I saw a doctor who diagnosed me with sciatica and prescribed anti-inflammatory medication. But they didn’t seem to work — the back pain continued.

In England, where I am from and lived at the time, hospitals offered occupational health therapist services to their staff. This is a team of doctors and nurses whose job it is to look after the doctors and nurses of that hospital. They take care of job-related health problems — issues caused by your work that impact your ability to function in your job. My bad back fell into that category.

After the occupational health therapist examined me, he told me the pain in my back wasn’t really back pain — it was pain coming from my sacroiliac joint, one of the two joints that joins your pelvis to your lower spine. It was the first time I’d heard that term, but it definitely wouldn’t be the last.

He prescribed more anti-inflammatory drugs, along with a recommendation to see a physiotherapist who could teach me exercises that could also help. And that seemed to work — the pain went away. Kind of. But a few months later, I started feeling twinges.

An Unfamiliar Disease

Earlier that year, I had worked in an intensive care unit with some military doctors who knew about my pain. One asked me if I’d been tested for ankylosing spondylitis. I told him not only had I not been tested for it; I’d never even heard of it.

So here’s the definition: Ankylosing spondylitis (AS) is a type of inflammatory arthritis that affects the lower back and sacroiliac joints, as well as other joints. It is part of a spectrum of diseases known as axial spondyloarthritis (axSpA). When you have ankylosing spondylitis, it means that the damage to your joints is visible on X-rays. If you have similar symptoms but there’s no visible joint damage on X-rays, you could have a condition called non-radiographic axial spondyloarthritis (nr-axSpA). But back in 2010, non-radiographic axial spondyloarthritis was even less well-known than AS.

That doctor suggested I ask for an HLA-B27 test, a blood test that identifies if you have a particular gene that is associated with axSpA.

I was able to get that test, in part, because the next time I had a flare up of pain, my usual doctor was out and I saw a different doctor. This doctor actually ordered the test based on my symptoms, before I’d even asked about it. When I touched base with my regular doctor a few days later, before the results were back, she was very dismissive. She said, “I’ll be surprised if this comes back as positive. It was a complete waste of money.” But lo and behold, I was positive for the gene. She apologized and referred me to a rheumatologist.

But then imaging tests at the rheumatologist didn’t show any fusion in my joints. I was told that if I had ankylosing spondylitis the joints would have just fused and I wouldn’t be having pain anymore, which was horrifying to me at the time. I left that visit with no information — and no diagnosis. (I now know that spinal damage from axSpA occurs gradually. Just because I didn’t have total fusion of my joints at that time didn’t mean I didn’t have some form of axSpA.)

And the pain was back. It began flaring so intensely that I had to start taking time off work. Finally, it got to the point where I couldn’t walk. It was taking me 15 minutes to get from my bedroom to the bathroom in my small studio flat. I couldn’t bear weight without terrible pain. I was off work for three months.

A New Doctor and a Gameplan

Just before those flares, I had moved to London and found a new rheumatologist. Right away, things felt different with him. He was no nonsense guy, and came across a bit aggressive, but he was extremely good at what he was doing. After he examined me he said, “Okay, let’s get this fixed.”

He officially diagnosed me with ankylosing spondylitis and started the process for me to start taking a biologic medication known as a tumor necrosis factor (TNF) inhibitor. This type of medication, which needs to be injected or infused through an IV, targets an overactive immune system to reduce the inflammation that’s causing back pain.

It took me about three and a half years to get that diagnosis, which I know now is incredibly quick relative to what other axSpA patients go through. That happened, in part, because I was a nurse. I knew the right people and was in constant contact with doctors. I was able to get what I needed. If my circumstances had been different, I don’t think I would have been diagnosed as quickly.

One caveat: I now know that I technically didn’t have ankylosing spondylitis at that time, but rather had non-radiographic axial spondyloarthritis, although I didn’t know what nr-axSpA was yet (and neither did many doctors or health care providers). More on this below.

The Road Back to Functioning

After I started treatment with the biologic medication, everything got better. I started hydrotherapy, which is not as common in the U.S. as it is in the U.K., but is essentially physical therapy in a pool. It’s much easier for people with fused spines or limited mobility to do certain positions and stretches when the weight is removed from your joints in the water. I was by far the youngest person in my sessions, but it was fun, and it helped.

Then in 2014, my health backtracked a little. We had made a family decision to move to the U.S. and leading up to the move I wasn’t looking after myself as well as I should have. I’d put on a lot of weight and was having a lot more pain and stiffness.

We also didn’t have health insurance when we first arrived, so I was off my medication and generally deteriorating. I needed to find something to help me deal with my symptoms. Once we were settled, I took up martial arts, which I had enjoyed as a kid.

I hadn’t done it for 18 years, so it was almost like starting fresh, but I was surprised how much came back to me. I started practicing it regularly and along the way also started paying attention to what I was eating. As a result, I lost 40 pounds. Every five pounds I lost brought a noticeable difference in my flexibility and my ability to function. It made a huge impact on my pain levels, to the point where it was almost gone.

I haven’t stopped training since. In fact, I’m now a second-degree black belt. But even though I’m in a much better position than I was when I started my martial arts, and am back on my treatments, my disease is still degenerative. It’s going to progress with peaks and troughs. Unfortunately that period of symptom-free bliss couldn’t last forever.

These days I deal with some pain and stiffness in the mornings. Once I get moving, I feel better, which is pretty typical. My symptoms are textbook, for the most part because I keep active and I have good medications. I’m taking an anti-TNF biologic and an anti-inflammatory medication. I also continue to exercise to help manage my condition as well.

Building My Community

The time leading up to my diagnosis was both physically and mentally rough. I was living on my own and never saw anybody. Looking back, I can see that I was severely depressed. As my condition improved with treatment, I began writing a blog about my experience. I researched, and wrote, and wrote some more, and the blog started getting traction. People were being helped by what I was sharing.

I realized that by helping others with their axSpA, I was helping myself. Putting the words on the page was cathartic, and my mental health improved.

My roots in the world of axSpA deepened further as I got involved with a walk-a-thon called “Walk Your AS Off,” an annual community-led event that encouraged people with AS to be active by walking. It was a virtual event — people all over the globe could participate and track their steps. Over time, it got more and more popular. But it became clear that once the walk was over, people weren’t picking up the habit of walking for the rest of the year.

We decided to help change that. We formed an official nonprofit called Walk AS One. The walk-a-thon remains our main event of the year, but we also help raise awareness of the condition, fundraise, and encourage and motivate those with axSpA to be more active through walking and regular exercise so that they can work toward improving their quality of life.

Learning My Real Diagnosis: Non-Radiographic Axial Spondyloarthritis

It was through my advocacy as president of Walk AS One, and the research I continue to do for my writing that I recently came across a new classification for my condition: non-radiographic axial spondyloarthritis.

While I had always thought I had ankylosing spondylitis, it turns out that what I actually had all along was non-radiographic axial spondyloarthritis.

The two conditions — AS and nr-axSpA — cause very similar symptoms and disability, but the main difference comes down to whether you have structural damage to your joints that is visible on X-rays (hence the phrase “radiographic”). Some people with nr-axSpA progress to AS, but not all do.

My rheumatologist explained to me that because I don’t have radiographic changes, nr-axSpA is a more accurate diagnosis for me.

Why does the distinction even matter? Well, until recently, nr-axSpA didn’t have its own diagnostic code, so it was harder to get medication covered by insurance companies. I learned that there are probably many people like me who were told they had AS in order to get on treatment, when in fact, they had nr-axSpA.

I suspect there are loads of people who fall into this new category of non-radiographic axial spondyloarthritis, especially once people with inflammatory back pain become aware that it’s a thing, and doctors learn more about how to diagnose it. I hope that more people will get the diagnosis and treatment they need — and avoid permanent damage to their back and other joints — because of the wider diagnostic net that nr-axSpA casts.

My Advice for Others Living with Non-Radiographic Axial Spondyloarthritis

Watch the number on the scale

 Extra pounds put extra stress on your body that doesn’t need to be there, especially on your knees and back. Losing weight can help a lot with joint pain and stiffness. I personally saw my back pain got worse when I gained weight and improved when I lost weight and started exercising more.

Move your body — but not too much

Exercise is good for inflammatory back pain — moving around helps relieve inflammation and stiffness. But there is a fine line between getting enough exercise to help your symptoms and overdoing it. You want to be active but pay attention to your body. If you do too much one day, you may take yourself out for the rest of the week. I plan rest breaks during my martial arts practice so that I can continue doing it safely for more days of the week.

Go to the doctor

I have often heard people say their doctor visits feel like a waste of time. This is especially an issue for young men — just the group that is likely to dismiss their back pain symptoms and thus delay getting diagnosed with axSpA. A 2019 Cleveland Clinic survey showed that 72 percent of men under 54 “tough out” symptoms as long as possible before seeing a doctor.

As a former nurse who has spent time as a patient and a health care provider, I’ve learned there are ways to change this. In fact, I wrote a book called Taking Charge: Making Your Healthcare Appointments Work for You to help others to navigate their health care in a more empowering way. Educate yourself on your condition, form a relationship with your medical team, ask questions, and don’t be afraid to seek a second opinion or even a new doctor if you need one.

If I Could Say One Thing to My Newly Diagnosed Self …

Live a preventive life, not a reactive one. This diagnosis is not something you’re going to get a day off from. Don’t take a day off from healthy practices because you’re feeling well. Keep exercising and eating healthy, even if you’re not in pain. Consistency is key, even on good days.

Track Your AxSpA Symptoms with ArthritisPower

Join CreakyJoints’ patient-centered research registry and track symptoms like fatigue and pain. Learn more and sign up here.

This educational resource was made possible with support from UCB, a global biopharmaceutical company focused on neurology and immunology.