• MySpondylitisTeam surveyed members about how symptoms affect their lives and how they feel about treatments.
• Nearly all reported that symptoms like lower back pain and fatigue affect their quality of life and make it hard to stay active.
• Few members reported being “very satisfied” with the medications they take for spondyloarthritis or the doctor who treats them.

MySpondylitisTeam surveyed members about quality of life with spondyloarthritis (SpA), a type of inflammatory arthritis that affects the spine. There are several subtypes of SpA, including ankylosing spondylitis, nonradiographic axial spondyloarthritis (nr-axSpA), and psoriatic arthritis. SpA causes lower back pain, fatigue, and stiffness.

To help doctors and other health care professionals better understand the experiences of people living with SpA, MySpondylitisTeam shared some of these survey findings at the 2023 annual meeting of the European Alliance of Associations for Rheumatology.

Read on to find out what MySpondylitisTeam members said about how SpA symptoms and treatments affect their lives.

Who Took the Survey?

In July 2022, 361 members of MySpondylitisTeam completed the survey. All members were aged 21 or older and had been diagnosed with spondyloarthritis by a doctor. Most who completed the survey were women (77 percent) and people who live in the United States (83 percent).

The majority of members who completed the survey had a diagnosis of ankylosing spondylitis (70 percent), but others reported having different types of SpA:

• Eleven percent had psoriatic arthritis.
• Seven percent had nr-axSpA.
• Eighteen percent were unsure of their specific type of spondyloarthritis

How Does Spondyloarthritis Affect Quality of Life?

Members who took the survey reported that spondyloarthritis takes both a physical and emotional toll on their well-being.

Nearly all those who responded — 92 percent — agreed that SpA hurts their quality of life. Additionally, 88 percent agreed that its symptoms make it hard to do everyday activities, and 87 percent said the condition makes it hard to exercise or stay active. Since regular exercise is important to help people with SpA keep their joints healthy, this is a serious problem.

Spondyloarthritis in Members’ Own Words

Members who took the survey described living with spondylitis in their own words:

• “It’s very hard to be in constant pain and try to live the life I desire to live. The fatigue is overwhelming.”
• “My diagnosis was missed until a year ago. I have lived with pain from my late 30s until [my 60s]. I’m stuck in a spiral of trying to find the right meds, the right doctor, the right exercise and diet.”
• “I am never pain-free. I don’t sleep well. I am unable to work.”
• “I’m unable to do lifting and kneeling, so it limits things like housework and gardening.”

Members’ Most Common Symptoms

MySpondylitisTeam asked members which symptoms they experienced in the past year. Almost all indicated lower back pain and fatigue. Most also experienced joint pain, back stiffness, hip pain, neck pain, and stiff joints.

“It affects my whole entire life,” described one member. “It just kills me, especially in my neck and my back and my hips — it’s just terrible.”

Another said, “My hip and shoulder pain keep me from sleeping well. My neck has constant pain, and some days I can barely turn my head.”

Mental and Emotional Wellness

Most members who responded to the survey also indicated they’d experienced depression (63 percent) and anxiety (61 percent) in the past year. Depression is common for people with axial spondyloarthritis and psoriatic arthritis.

This is important to note since researchers have found that people with both spondyloarthritis and depression:

• Are less likely to stick to their treatment plan for physical symptoms of SpA
• Tend to have worse SpA symptoms and disability
• May get less relief from SpA treatments

What Members Think About Their Spondyloarthritis Treatments

MySpondylitisTeam asked members what medications they were using at the time of the survey. The three most common categories were:

• Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen or naproxen
• Biologics, like adalimumab or certolizumab
• Opioid pain relievers, including hydrocodone and oxycodone

Few members reported being “very satisfied” with the medications they take to treat their spondyloarthritis. Just 22 percent said they were “extremely satisfied” or “very satisfied.” Forty-three percent were somewhat satisfied, and 35 percent were “not very satisfied” or “not at all satisfied.”

Satisfaction With the Doctor Who Treats Spondyloarthritis

Members also had mixed reactions to the care they received from their rheumatologist or the doctor who primarily treats their spondyloarthritis. Among those who responded, 35 percent said they were “extremely satisfied” or “very satisfied,” 34 percent were “somewhat satisfied,” and 31 percent were “not very satisfied” or “not at all satisfied” with their medical care.

Those who were more satisfied with the care they received were also more likely to say they believed their doctor provides personalized care. Those who were more satisfied tended to feel their doctor made personalized recommendations for medications, recommended regular checkups, listened to their needs, and addressed their symptoms.

Members’ Tips on Finding a Good Doctor and Getting Better Care

Members were asked to share their recommendations for how to find a doctor and how to make sure they get the best care for SpA. Here are a few of their tips:

• “Go to a rheumatologist. Write down your symptoms. Write down things like illnesses, flare-ups, and infections so that the doctor has an overall picture of what’s been going on for a while.”
• “Find a good rheumatologist you can talk to.”
• “Find the right doctor, and keep up with your care.”
• “Find a doctor who will listen to you and react accordingly — or move on.”

Struggles With Doctors

Members also shared some of their struggles with getting doctors to listen, answer questions, and recommend treatments that will help.

• “My doctor doesn’t like when you question his authority by asking questions. He’s more of a ‘Do as I say’ doctor.”
• “Getting a doctor to listen, much less explain anything, is horrible. And the fact that you have to get in terrible shape before they will even look into your health.”
• “I’ve seen a rheumatologist who has since discharged me back to my general practitioner, who does nothing.”

It’s vital to find a doctor who will work with you to set and reach your goals for treating spondyloarthritis. The right doctor will help you evaluate how well your current treatment is working. Together, you can decide if it might be time to switch to a different medication that may work better for you.

Since mental and emotional wellness also play a role in your overall well-being, it’s important to discuss symptoms like depression and anxiety with your health care provider.

Get Support From People Who Understand

On MySpondylitisTeam, more than 97,000 members come together in a supportive atmosphere to ask questions, give advice, and share their stories with others who understand life with spondyloarthritis.

Have you found effective ways to manage your spondyloarthritis symptoms and improve your quality of life? Are you satisfied with the care you receive from your doctor? Share your thoughts in the comments below, or start a conversation in the Activities section.