With AS remission in sight, it’s thumbs-up from my rheumatologist

If I type “ankylosing spondylitis” (AS) into Google, one of the first prompts that pops up on my screen is “Can ankylosing spondylitis be cured?” Though I know AS can’t be cured entirely because it’s a chronic autoimmune disease, I believe I’m getting close to achieving remission.

At the time I was diagnosed with AS, I didn’t believe I’d ever find relief from my intensely burning spine and ribs. Even strong nonsteroidal anti-inflammatory drugs (NSAIDs) didn’t entirely ease my symptoms, and I was desperate for any treatment that would help me get some pain-free sleep. The frustration, joint pain, and stiffness grated away at me physically and mentally, day after day.

But as I skipped away from my most recent rheumatology appointment last month, I was grinning from ear to ear. I’d received the news that I’m now managing my disease so well that my current AS symptoms are almost imperceptible.

That night, I wrote an excited online message to my wonderfully supportive mum and dad, who live in New Zealand. “Good news today. I had my six-month checkup at the hospital rheumatology clinic, and he said it sounds like I have the disease so well under control that he doesn’t need to see me for at least a year (unless something goes wrong),” I typed with a smile. “I feel like I’ve just graduated from ankylosing spondylitis school!”

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Am I completely pain-free? Not quite.

Though I’m filled with absolute delight and excitement that my AS symptoms have eased dramatically, I’m still cautious about using the word “remission.”

The Arthritis Foundation describes ankylosing spondylitis remission as “the complete absence of signs and symptoms of AS.” I’d describe my current state as low disease activity, as my symptoms feel more like discomfort or background noise. The pain isn’t screaming in my face, and I’m not dreading every day, desperate for a solution. Instead, I feel content and even optimistic about my future.

I still have days when I feel increased stiffness or that sizzle of sacroiliac pain lurking in my lower back. The difference now is that with several years of experience living with AS, I have better ideas about how to stop that niggle or warning sign from developing into a full-blown flare.

What have I done to relieve my AS symptoms?

I believe the accumulation of many little daily actions and decisions makes a huge difference in my AS severity. To stop my symptoms from worsening, I have learned to avoid certain exercises at the gym and not aggravate my back by doing things like carrying heavy bags from the supermarket to the car. I now avoid stressful situations, swim and stretch regularly, and, above all, I make sure to strictly follow the no-starch diet for ankylosing spondylitis.

In some ways, I’ve had to completely redesign my life to better manage my AS from every angle. I have a vastly different diet, exercise regimen, career, and mindset. When I type those words, it makes me realize how much work it’s actually taken. Reducing my AS symptoms hasn’t been easy, but it’s been worth every challenge and difficult decision.

Luckily, at this stage, I no longer rely on anti-inflammatory medication, and I haven’t yet needed biologics. Most days, I feel only a minimal amount of stiffness or pain in my spine and sacroiliac joints, but there’s a large and looming caveat to that state. To stay relatively pain-free, I feel that I walk a narrow and sometimes tiring path of strict diet, specific exercise, stress avoidance, and symptom monitoring. The path doesn’t allow me to deviate or make a single mistake without paying the price of pain.

I mostly credit my current state of low disease activity to the no-starch diet, which is designed to restrict the gut bacteria that immunologist and professor Alan Ebringer believes cause painful joint inflammation in people with AS. When I follow this way of eating, my aches and pains are dramatically reduced, and I’m able to sleep soundly without awaking in agony in the early morning. I know a big diet change isn’t for everyone, but I’m immensely grateful that it works so well for me and for others.

To some outsiders, I might seem like strangely rigid person who won’t sneakily devour “just one slice” of pizza, or who would rather rest at home than go out late for cocktails. I know my decisions to simplify my life and improve my health have had a positive result, because I can feel my AS easing up.

The AS journey will always have bumps, twists, and turns, but enjoying any calm paths along the way is worth making dramatic changes.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.