No one knows your body better than you, and you’ll likely notice when something feels off. It’s easy to brush away symptoms that don’t seem concerning, but they could indicate an actual health problem. Many MySpondylitisTeam members experienced symptoms long before receiving an axial spondyloarthritis (axSpA) diagnosis.

One member shared, “I was finally diagnosed… I had been having symptoms for years.” Another said, “I was diagnosed last week with axSpA after having ongoing joint pain for the past 35 years.”

Knowing the signs and symptoms of axSpA can help empower you to seek medical treatment sooner. Getting started with treatment modalities like exercise as soon as you can may help you better manage the condition.¹ It can take years to confirm an axSpA diagnosis, and symptoms can vary greatly between any two people with the condition.² If you’re already on a treatment for axSpA, tell your health care provider if you have new or persisting symptoms. They can review your treatment options and figure out a plan to better control your symptoms and prevent disease progression.

Whether you’ve been living with the disease for years or don’t yet have a formal diagnosis, here are five axSpA symptoms you shouldn’t ignore.

The most common axSpA symptom is back pain — specifically, in the lower back where your pelvis and spine meet.¹ You may also lose some flexibility in your back and neck. This symptom tends to be more severe in people with ankylosing spondylitis (AS) than in those with nonradiographic axial spondyloarthritis (nr-axSpA). Hip arthritis, which can cause hip, groin, or buttocks pain, is more common in AS than in nr-axSpA.¹

Many people notice new back pain as their first symptom, and it gradually worsens. The lower back pain typically begins before 45 years of age.¹ MySpondylitisTeam members have shared their experiences:

• “I’m 68, and I was diagnosed with AS one year ago. I’ve had severe spinal/back issues since I was in the 8th grade.”
• “I already knew I had arthritis of the spine when I was diagnosed in 2016. I had no idea about these symptoms, and I wonder if this is what’s been wrong with me all along. I’m 38 and have suffered since I was in my 20s.”

If you begin experiencing new back or hip pain, bring it up to your doctor or rheumatologist.

Back pain in axSpA is usually at its worst after long periods of rest, like at night and in the morning, and gets better with activity and movement.¹ MySpondylitisTeam members have found ways to get active and help manage their pain:

• “Heat on my back, use Icy Hot, yoga, and water therapy. Must keep on keeping on.”
• “I was tired of feeling so stiff every morning. I started yoga during lockdown and found it so helpful that now I don’t want to go a day without it.”

Foot pain also may point to axSpA. This symptom is caused by inflammation in the area where tendons and ligaments attach to bone. Common causes of foot pain in people with axSpA include plantar fasciitis (inflammation of the connective tissue along the bottom of your foot) and Achilles tendinitis (inflammation of your Achilles tendon along the back of your heel).^1,3,4

MySpondylitisTeam members have shared their experiences with foot pain and axSpA. One said, “Pain in your feet is hard to ignore. I had plantar fasciitis and bone spurs at the same time. That was almost 15 years ago, and I only got my spondyloarthritis diagnosis three years ago. I look back on all of the issues I’ve had, even as a child, and they were all caused by the same disease.”

If you notice new foot pain, your doctor may refer you to a foot specialist or podiatrist.

MySpondylitisTeam members have shared their remedies for foot pain:

• “It helps me not to wear flats or walk barefoot around the house. Drugstores also sell inserts for your shoes that take the pressure off your heels.”
• “I use two bags of frozen peas and lie down with those under the backs of my heels. It takes away some of the inflammation.”
• “I have a lot of heel and foot pain. I use a plantar fasciitis brace to stretch things out while I sleep, and it helps some.”

Uveitis, or eye inflammation, is one of the most common axSpA symptoms outside of joint pain. Up to one-third of people with axSpA experience uveitis at some point.⁵ The most common form is acute anterior uveitis, which can develop suddenly.⁶ It causes your eyes to get red, painful, and sensitive to light.⁵

Uveitis can be a sign of undiagnosed axial spondyloarthritis, and the risk of uveitis tends to increase the longer one has had axial spondyloarthritis.⁵ Bring up any eye symptoms to your doctor. They will likely refer you to an ophthalmologist (eye doctor) for further assessment.

One MySpondylitisTeam member shared their experience with getting a uveitis diagnosis: “Just diagnosed two days ago. I got X-rays today. I’ve had recurrent uveitis for two years. I’m glad to finally have the correct diagnosis.”

For uveitis, your doctor may prescribe steroid eye drops to help reduce inflammation. Depending on your case, you may have to use the drops several times a day.⁶

If you experience side effects when starting a new medication, be sure to tell your doctor. They may change your dosage or switch you to a different medication to avoid unwanted side effects. It’s important to work with your doctor to find the right treatment to help you best manage your axSpA and live your life to its fullest.

Doctors and researchers have found that many inflammatory diseases overlap, and many people have two or more inflammatory conditions at the same time. 6% to 14% of people with AS also have inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis.⁷

Some MySpondylitisTeam members have noticed that IBD symptoms contribute to their axSpA symptoms. One member shared, “Do you find that when you have a Crohn’s flare, you also have worse joint pain? I definitely do!”

“It looks as though my ulcerative colitis had flared up during the summer, and that exacerbated my lower back pain,” another member said. “By October, the colitis had settled down, and so did the back pain.”

If you have abdominal cramping, diarrhea, or bloating in addition to your axSpA symptoms, tell your doctor. They may refer you to a gastroenterologist who can help. There are some overlapping treatment options for both axSpA and IBD.⁷ Getting started on an axSpA treatment plan could help you better manage these gastrointestinal symptoms and other health conditions, and help you to feel better overall.

5. Psoriasis

Research has found between 3.1% and 18.9% of people with axSpA also have psoriasis, depending on the geographic area.⁸ Psoriasis is an inflammatory skin disorder that causes raised, dry, sometimes white or silvery plaques on the skin.⁸ There are several treatment options for psoriasis, including topical treatments, oral medications, and systemic medications like biologics.⁸ If you experience skin symptoms that might be psoriasis, schedule an appointment with your primary care provider or a dermatologist.

When making a doctor’s appointment for any of these symptoms, explain all your concerns in detail so that the staff can book an appropriate amount of appointment time.⁹ Jot down all your symptoms, how often they occur, and anything that helps relieve them. Write down any goals you have for your treatment plan. Some treatment goals include improving mobility, reducing joint pain and stiffness, or getting back to activities you love. If you’re already on a treatment plan, but you aren’t hitting your treatment goals or you’re still experiencing symptoms, talk to your doctor about other options.

Bring these notes — along with a written list of any questions and concerns — to your appointments to be sure you address everything. Your time with your doctor may be short, so it’s important to make the most of it.

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GL-DA-2300220. Date of preparation: September 2023
© UCB Biopharma SRL, 2023. All rights reserved.