Patient Journeys: Living with Ankylosing Spondylitis

Ankylosing spondylitis is a chronic inflammatory disease that typically develops in early adulthood, causing back pain and the loss of flexibility.  Here, two individuals tell what it’s like to live with the condition.

What is Ankylosing Spondylitis?

A type of inflammatory arthritis that affects the spine, ankylosing spondylitis (AS) can cause fusions of the bones and joints. The disease leads to stiffness, immobility and, in severe cases, changes in posture (think a “hunched back”). The condition affects men twice as often than women and has some genetic links, but is rare, affecting only 0.2% to 0.5% of the US adult population. Most people are diagnosed in their 20s or 30s.

How Ankylosing Spondylitis Turned This Patient into a Podcaster 

Jayson Sacco has a debilitating form of arthritis in the spine called ankylosing spondylitis. He became a podcaster as a way of sharing his knowledge and lived experience with others.

Jayson Sacco, 50, of Croswell, Michigan, began to have what his parents thought were growing pains at age 9. After many years of going to a chiropractor, they took him to a rheumatologist in Detroit and he was diagnosed with ankylosing spondylitis (AS) at age 14. (Rheumatologists specialize in inflammatory and autoimmune conditions.)

Today, thanks to a better understanding of the disease, there is an umbrella term for AS called Axial Spondyloarthritis that includes the various types of inflammatory arthritis that affect the spine, psoriatic arthritis, reactive arthritis, enteropathic arthritis which is a form of arthritis linked to inflammatory bowel disease (IBD), and juvenile spondyloarthritis (which impacts children and adolescents), as well as other joints.

The disorder is broken into two types. In non-radiographic axial spondyloarthritis (nr-AxSpA), the individual has pain but there’s no visible damage on an X-ray. In ankylosing spondylitis, there is visible damage on an X-ray to the spine or the sacroiliac joints (these connect the lower spine to the pelvis) as well as pain.

 “A lot of people with AS get the original pain in the lower back but for me, the disease ravaged my hips,” says Jayson. “After that, it attacked my back.”

Within a few years of his initial diagnosis, the bones in Jayson’s sacroiliac joints had fused. To relieve the pain, he had his first hip replacement (on his left hip) at the age of 21 and his right hip done 2 years later, but these procedures didn’t provide as much relief as he had hoped for. So when his doctor told him that a drier climate might ease his pain, he moved to Arizona in 1996.

A financial advisor, Jayson was able to transfer his work to San Antonio, Texas, and moved there with his family in 2005. In 2010, his left hip had worn out and Jayson needed a revision. Once the surgeon began to operate, more damage to the hip was found and Jayson underwent a third operation just a few weeks later. He moved back to Michigan from San Antonio in 2018. “My dad had a bad bout with esophageal cancer and was starting to get dementia,” he recalls. “I came back to help take care of him and I got a new rheumatologist who prescribed Cosentyx.”

(A biologic drug, Cosentyx--secukinumab--is used to treat moderate to severe plaque psoriasis, psoriatic arthritis, as well as ankylosing spondylitis and non-radiographic axial spondyloarthritis.)

On this new medication, Jayson has finally gotten relief from pain. “You do a shot a week for 5 weeks and by the third week, I felt amazing,” he said. This was the third biologic medication Jayson had tried, and the first to be effective.  Still, it was becoming harder to maintain his job as a financial advisor while in pain. By the end of 2018, Jayson had gone on disability. He now walks with a cane and says he’s more sedentary than he would like to be, but believes in maintaining a positive attitude.

“The emotional part of having this disease can tear people up,” he says. “If you take a medicine and it doesn’t work, it’s easy to become depressed and say it failed. I say, don’t take the negative point of view. Just move on to the next medicine. Something will work, it just takes time.”

Since going on disability, Jayson joined a Facebook support group for AS, and also decided to launch a podcast about his life with the condition. “I recorded eight episodes and put them out there,” he recalls. “I waited to see if anyone would get in touch to see if I was doing more.”  To his surprise, his podcast was immediately a hit. He recently crossed 30,000 downloads and his podcast, The Ankylosing Spondylitis Podcast, is heard by listeners in 95 countries, he says.

To help him with pain management, Jayson recently began to practice yoga and meditation. “Yoga gets me moving and keeps me active,” he says. “And meditation addresses my anxiety If I start feeling anxious anywhere I’m at, I go sit in my car for a few minutes and just meditate.”

Eye Pain Can Be a Red Flag for Ankylosing Spondylitis 

Hillary Norton, MD was in her early 20s when she began experiencing such bad back pain that she had trouble getting comfortable in bed at night. At times, it would take her 15 minutes just to roll from her side to her back, and while the pain initially was intermittent, it grew steadily worse over a matter of months.

When an ophthalmologist treating her eye pain asked if she also had back pain, Hillary, then in medical school and a first year intern, was stunned. Eye inflammation (also known as iritis or uveitis) can be a red flag for ankylosing spondylitis.

 

Hillary eventually sought treatment from a sports medicine physician, who told her she had a sprained back and prescribed physical therapy. Despite the many weeks of PT, her pain never really subsided and Hillary resigned herself to living with it. She was unable to get out of bed on her own for several years, and had to give up running because it just became too uncomfortable.

Then, in her early 30s, while she was a first-year intern in medical school, Hillary developed a severe case or iritis, an eye inflammation that causes pain, light sensitivity, decreased vision, and headache.

“The ophthalmologist asked me if I was experiencing back pain and when I said that I’d been having back pain for 10 years, he recommended that I see a rheumatologist,” recalls Hillary, who grew up in Washington, DC, but who’s lived in New Mexico for many years. “And before long, I got my diagnosis.”

Soon after Hillary was diagnosed with ankylosing spondylitis, her sister received the same diagnosis (Most people with AS produce a genetic marker protein called the human leukocyte antigen B27 – HLA-B27, but many individuals with this marker never get AS while others can develop the condition without having the protein.)Tests confirmed that both sisters carry the HLA-B27 gene.

For Hillary, the years before her diagnosis were filled with denial that she had a chronic disease. “I would be sitting up in the middle of the night because I couldn’t lie flat, and I would think to myself, well, I have a back problem but no chronic disease,” she recalls. Once she found out that she had ankylosing spondylitis, she initially refused to accept the diagnosis.  (For more on grief after a chronic pain diagnosis, read "Accepting Chronic Pain Diagnosis: A Trip Through the 5 Emotional Stages.) 

“I resisted treatment at first because I was so worried that I would somehow wind up in a wheelchair,” she says. “I had been using exercise for so long to manage my disease but it wasn’t getting any better. It was clear that I needed to work with a rheumatologist on my symptoms.”

She began to take a biologic medication to treat her disease and she also worked to improve her diet. “Sugar and processed carbs are inflammatory foods that can make this disease worse, so I decided to begin to limit these foods,” Hillary says. “Eating a healthy diet is very important in the management of this condition.”

(AS treatments typically include medications that reduce inflammation and physical therapy and exercise to stay flexible and mobile. Common disease-modifying antirheumatic drugs (DMARDs) include methotrexate and sulfasalazine, while newer, promising agents include tumor necrosis factor (TNF) blockers, which suppress the body’s response to TNF, a chemical that causes inflammation, and may help slow the progression of AS.

After graduating from medical school, Hillary was inspired to specialize in rheumatology because she felt that her own experience facing down a chronic disease would help her to be more empathetic to patients living with the same condition. She now has her own practice in Santa Fe, where she tries to increase awareness of AS as she feels that it’s very underdiagnosed.

Recently, Hillary was approached by Novartis to collaborate with them on the Monster Pain in the AS campaign, which aims to raise awareness about unexplained back pain or stiffness that could be axSpA. The campaign includes a three-minute quiz to help a person learn the cause of their back pain and to provide referrals to a rheumatologist.

Above all, Hillary tries to stay optimistic.

“Don’t let the disease become who you are,” she says. “And know that you can have a great life living with ankylosing spondylitis. Having a painful but often invisible disease can cause you to dip deeper into life to find meaning, and it can take you to places you didn’t anticipate.”

 

Updated on: 04/22/21
Continue Reading:
The Empowered Patient’s Guide to Lower Back Pain
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