Myths and Misconceptions about AxSpA and the AxSpA spectrum

Reviewed by: HU Medical Review Board | Last reviewed: May 2020 | Last updated: May 2022

Any disease or condition has myths and misconceptions that go along with it, and axial spondyloarthritis (AxSpA) is no different. Conditions like those on the AxSpA spectrum may be misunderstood and have misconceptions about them because they are still being researched and there are some unknowns about various aspects of the conditions and their treatment.

If you have any questions about things you might have heard from someone, or want to know whether something is true or not, it is always a good idea to ask your healthcare provider. They’ll be able to clear up any misunderstandings and set the story straight. This can help ease your mind and provide you with the correct information you need to feel empowered and make informed decisions about your health.

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Myth: Ankylosing spondylitis (AS) and AxSpA are mainly diagnosed in men.

Fact: While AS is diagnosed more frequently in men, women are still affected by the condition. The male-to-female ratio is about 2-3:1. Quality of life for women with AS tends to be self-ranked lower than men, and they are more likely to stop working because of the condition than men.1 With general AxSpA, research is often not stratified by gender, making it hard to know the full picture of gender and diagnosis. Like AS, women with other forms of AxSpA tend to be diagnosed later than men, perhaps because of the misconceptions that it does not affect women.1,2

Myth: If you have no signs of sacroiliac (SI) joint damage on X-rays, you don’t have to worry about AxSpA or AS.

Fact: Just because SI joint damage isn’t apparent on x-rays doesn’t mean you’re in the clear, unfortunately. Non-radiographic axial spondyloarthritis (nr-AxSpA) does not show signs of damage on x-rays, but a person is still symptomatic and can be diagnosed with the condition.

The changes you see on x-rays are reparative symptoms and can appear up to 10 years after the inflammation and other symptoms of AxSpA start. AxSpA and AS are progressive conditions; it takes time for the condition to get to a point where it is visible on x-ray.1

Myth: Because AxSpA is progressive, it will result in severe disability and/or a fused spine.

Fact: Yes, AxSpA and the conditions on the AxSpA spectrum are progressive, but a fused spine is not necessarily inevitable. Everyone is different, and everyone experiences medical conditions differently. The progression of nr-AxSpA and the course of other conditions on the AxSpA spectrum can vary. Not everyone experiences spinal fusion; many people have other symptoms that can be effectively managed with medications, exercise, and lifestyle changes.3

Myth: Since AxSpA is a progressive condition, it is not worth getting treatment anyway, since nothing will cure it.

Fact: It is true that AxSpA is a chronic and progressive condition and that there is no cure. That said, treatment for AxSpA and conditions on the AxSpA spectrum can help relieve symptoms, slow down progression or worsening of symptoms, and improve quality of life. Medications can help relieve symptoms enough for you to do exercises that can help promote spinal extension and improve mobility.3

Treatments are available, and are worth looking into. Treatment does not equal cure, but it can improve symptoms, relieve pain, and improve quality of life, all of which are beneficial.

Myth: AxSpA conditions only affect the back.

Fact: While lower back pain is a common symptom of AxSpA, it can also affect the pelvic joints. AS is a form of AxSpA that can also affect other parts of the body, including the shoulders, hips, and even the eyes. This is why getting an accurate diagnosis of AxSpA is so important, so that you can get the proper treatment for the kind of AxSpA you have.4

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