Axial Spondyloarthritis (AxSpA)

How to pronounce it:

Ankylosing - ank-kih-low-sing 

Axial - ak-see-uhl

Spondyloarthritis - spondy-lo-ar-thri-tis

Spondylitis - spaan-duh-lie-tuhs


AiArthritis defines axial spondyloarthritis as:


Axial spondyloarthritis (AxSpA) typically involves joints, tissues, and tendons (enthesitis) around the spine, including back and neck as well as around the ribs, largely affecting lower back/tailbone area. It also can affect organs (most often eyes and intestines). Axial spondyloarthritis is an umbrella name for the disease that includes:


  • Non-radiographic axial spondyloarthritis - Where x-ray changes are not present but inflammation is often visible on an MRI.
  • Radiographic axial spondyloarthritis (ankylosing spondylitis or AS) - Where changes to the sacroiliac joints or the spine can be seen on x-ray.


The different terms are used to understand the extent of damage the disease has caused, but the symptoms are very similar.

  • Juvenile version is Juvenile AxSpA (jAxSpA), which starts with a diagnosis of Enthesitis Related Arthritis (ERA)
  • Undifferentiated SpA is when there is not sufficient evidence to support a diagnosis of at least nr-AxSpA or other spondyloarthritis diseases, like Psoriatic Arthritis


Note: The spectrum that includes nr-AxSpA and AS started around 2012. Prior to this time, there was only the diagnosis of AS and Undifferentiated SpA.



Symptoms

Symptoms of AiArthritis Diseases Regardless of Diagnosis

Common in All AiArthritis Diseases



  • Periods of worsening symptoms are called flares. A flare can last for hours, days, weeks, or months.
  • Condition improves with activity and exercise and worsens with rest.
  • When inflammation is left uncontrolled due to lack of proper treatment, comorbidities can develop. 70% of patients with chronic, lifelong disease will develop comorbidities, including dual or triple diagnoses.
  • Autoimmune diseases run in families. If anyone in your immediate family (parents, siblings) or extended family (aunts, uncles, grandparents) have been diagnosed with ANY autoimmune disease, there is the possibility of genetic predisposition.

 “Auto” Symptoms






  • Severe fatigue or exhaustion that may not be helped by caffeine/stimulants and can happen even after a long period of rest.
  • “Brain fog” - or periods of time where thinking gets clouded and it becomes difficult to concentrate.
  • Flu-like symptoms, without having the flu- nausea, muscle weakness, and general malaise.
  • Fever, typically low grade in autoimmune and higher grade in autoinflammatory (% strongly varies per disease).


Reference: Early Symptoms of AiArthritis Study, AiArthritis, 2019.


View Early Symptoms Study

Inflammatory Arthritis Symptoms


  • Severe stiffness in one or more joints, especially in the morning or after sitting for long periods of time. 
  • Episodes of joint pain that may last for hours, days, or even weeks, that can appear and disappear suddenly. Often described as “jumping pain” into different locations.


Typically the joint pain will coincide with one or more “Auto” symptoms and start and stop suddenly - for no apparent reason (which is called a "flare").  Some people will experience all of the above symptoms, others only a few.  If you have any of the arthritis features, and at least one of the “Auto” features, please consult your physician about a referral to a rheumatologist.


Symptoms Often Associated with Axial Spondyloarthritis:

  • Low back pain and stiffness on either side of where your pelvis meets your spine in your sacroiliac joints is one of the most common symptoms of both nr-AxSpA and AS.
  • Feeling of limited spinal flexibility, particularly after being immobile, which can become so severe that people can’t do day-to-day activities.
  • Better after exercise, worse when restricted or braced.
  • Joint pain also in one or more peripheral joints- meaning on the extremities (those in the hands, feet, arms, and legs). It is common this pain starts in one side of the body (asymmetrical) and often involves the smallest finger joints by the nailbed).
  • Enthesitis, which is inflammation in places where ligaments and tendons connect with bones, such as at the Achilles heel in the foot or in the chest. Chest inflammation may be costochondritis, or inflammation where the ribs and spine connect.


What fellow patients want you to know

A warning sign of the disease or that it is worsening - you'll suddenly feel like you need a new mattress or pillow because you wake up in so much pain.  "Suddenly uncomfortable when it used to be comfortable."


It literally may be a pain in your butt. (Your tailbone area is tender). You may at times need to sit on a donut (blow up or cushion with a hole cut out of the center).


A positive HLA-B27 gene test and X-rays or MRIs showing changes in the pelvic joints may point to axSpA but don’t confirm it; HLA-B27 gene test is more often negative in nr-axSpA.

It may become very hard to stand for long periods of time due to very low (buttocks) back pain. When flaring, consider using a high chair/barstool when able to stop the pressure on your low back.

More About Axial Spondyloarthritis

Diagnosing Axial Spondyloarthritis

There’s no single definitive test that can confirm a non-radiographic axial spondyloarthritis diagnosis, so rheumatologists look at a combination of physical exam, blood tests, and imaging (MRI), along with a family history of autoimmune disease (any autoimmune diagnosis, but AxSpA specifically tends to run in families), to determine symptoms and to see if there is any sign of inflammation in the sacroiliac joints. For an AS diagnosis, radiographic damage in the spine will be present. While the HLA-B27 is more common in those with radiographic damage, and can help to confirm AxSpA, it is not required to be diagnosed.

Notable Persons with this Disease

  • Dan Reynolds, Singer from Imagine Dragons
  • Zach Kornfeld, Content Creator from Try Guys (Youtube, Buzzfeed)
  • Mick Mars, Guitarist from Mötley Crüe
  • Lisa See, Author 
  • Jay Chou, Singer, Songwriter, Actor, and Producer

Interesting Facts about this Disease

  • AS is often referred to as a rare disease, but it is not a rare disease.
  • Up to recently (the last decade), it was thought to only be found in men and needing to have a family member with the disease to be diagnosed.
  • Prior to around 2012, only ankylosing spondylitis was the official diagnosis, but since then non-radiographic was added. This has resulted in many people still being misdiagnosed (for example with sero-negative, or negative blood work, rheumatoid arthritis) and others who call their diagnosis ankylosing spondylitis but who do not have radiographic damage (so they are likely nr-AxSpA in the larger Axial Spondylitis umbrella).
  • At least three pharaohs of the 18th and 19th dynasty of Old Egypt had Ankylosing Spondylitis: Amenhotep (Amenophis) II, Ramses II ("The Great"), and his son Merenptah. (source)
  • Bone disease in axial spondyloarthritis is contributes to both bone loss and new bone formation, while other AiArthritis diseases only lead to erosion. (source)
  • It was not until 2020 in the United States when nr-AxSpA got its own disease code, thanks to help from International Foundation for AiArthritis and the Spondylitis Association of America!

In an effort to ensure this page has the most accurate and up-to-date information, this page is currently awaiting medical review. Some information is subject to change.


Page Last Updated: 2/1/2023

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