Real Ankylosing Spondylitis Patients Offer Advice on Medications and Alternative Therapies

Real Ankylosing Spondylitis Patients Offer Advice on Medications and Alternative Therapies

Those who live with ankylosing spondylitis offer wisdom on how to successfully manage medications, mood, and alternative therapies.

If you have ankylosing spondylitis (AS), an inflammatory disease that causes your immune system to mistakenly attack your body’s healthy tissue, you know all about the way this condition can lead to chronic pain, immobility, and fatigue—among a host of other possible symptoms.

AS mainly affects the spine and sacroiliac joints, but it doesn’t spare other body parts, says Stella Bard, M.D., a board-certified rheumatologist at New York Arthritis in Brooklyn, NY. Other common AS symptoms include neck and hip pain (especially in women), eye inflammation (known as uveitis), gut health issues, psoriasis (PsA), and enthesitis (which is the inflammation of tendons and ligaments, like in the foot or rib cage). Less common complications, she says, include cardiopulmonary problems.

Got any of those issues? Then you’ll also know that treating AS can be tricky. For one, logistical challenges, like frustrating diagnostic delays are common. But that’s not all: Not everyone with AS will experience the same disease, meaning treatments may vary from person to person, says David H. Goddard, M.D., a board-certified rheumatologist and clinical professor at the Department of Medicine at NYU Grossman School of Medicine in New York City.

“The spectrum of disease varies from patients, with mild spinal stiffness controlled by exercise and anti-inflammatory medication at one end, to progressive inflammatory disease with calcification of the intervertebral ligaments at the other,” Dr. Goddard explains.

The good news? It’s entirely possible to live well with AS, both experts agree. From medication to lifestyle shifts, you can get a handle on this disease. If you’re newly diagnosed or seeking patient perspectives to guide you through your AS management journey, we’ve got the scoop on what to expect from treatment—directly from five people with AS.

Treatment Trial and Error Is Totally Normal

Anna Sampson, 23, of Ontario, Canada, has AS and also fibromyalgia. Sampson, who uses they/them pronouns, has tried a range of treatments. NSAIDs, often considered the first-line of treatment for AS, haven’t provided much help (they don’t work for everyone), and biologics on their own, too, fell short. So, Sampson now uses a blend of treatments to manage their AS and fibromyalgia. “I’ve only ever been on one biologic (infliximab), and the dose and frequency had to be increased to offer moderate symptom relief,” Sampson explains.

Approaching treatment from multiple angles has worked best, Sampson adds. “It took over four years for me and involved a lot of trial and error. I used to get really upset when treatments wouldn’t work, but after experimenting with doctors, we found a combination that works best for me.”

Aside from infliximab, Sampson also uses nerve block injections and ketamine. But beyond medication, Sampson embraces consistent sleep, physiotherapy, and daily movement, as well as limiting alcohol and processed food intake (which have been shown to reduce inflammation).

Sampson’s key advice? “Even with the same diagnosis, effective treatment differs from person to person. It’s OK to ask questions, because it is important to understand what is happening in your body, how treatments could help, and the possible side effects.”

Managing AS, Body and Mind

Nadine Cruz, 38, from the Bronx, NY, was diagnosed in 2018 and has also tried several different kinds of treatments—from steroids and epidural injections to multiple biologics. In addition to medication, lidocaine patches, massage therapy, physical therapy, and aquatic therapy are in her arsenal.

“I have permanent joint damage in my lumbar spine and sacroiliac joints. There are not many options [for treatment] once damage is done,” she says, and none of the treatments she’s tried so far have helped very much. Some medications have also caused side effects. Because of this, she’s turned to movement and diet as regular management tools.

“I eat well and exercise—and, for me, that has been more beneficial than the treatments I’ve been taking,” Cruz says. She’s also removed sugary foods and drinks, fried foods, processed foods, and saturated fat, reaching for fruits, veggies, and green leafy veggies instead.

Movement is deeply important to Cruz. “I use dance [swaying to the music, not dance class] as a form of exercise because working out has become very difficult due to limited mobility in my spine and legs. I’ve also recently started light exercise at home to rebuild my strength. On bad days, I dance in my roller chair. I kind of taught myself how to use my hip muscles sitting down.”

Unlike running or working out in the gym, free-dancing is gentle. Cruz often just grooves to the beat in her bedroom—and shares her love of dance on her Instagram account, encouraging others with AS to get some moves in.

Cruz’s best advice comes from years of experience: “Do lots of research on AS and the medications you are being exposed to. Everyone reacts differently to different treatments.”

But beyond knowing what treatments are out there and what’s right for you, Cruz recommends also taking care of your mental health—and that’s where self-advocacy comes in. “It took me a long time to become my own advocate. Use your voice. This is your body and you are allowed to choose what goes into it. ”

Early Treatment Is Important

Diana Castaldini, who is in her thirties, of New York City was diagnosed with AS in 2014 and was prescribed a biologic. “I was completely freaked out by it initially,” she says. “In fact, I refused it because the idea of injecting myself with a medication that drastically alters the immune system terrified me,” she says, explaining that she wanted to see if she could manage the disease through lifestyle adjustments, and without the use of medication.

Unfortunately, those lifestyle shifts—including herbal remedies and supplements—didn’t work. “I started losing my ability to walk due to pain and inflammation. That scared me way more than any medication.”

In the end, Castaldini did her research and made an informed decision: “I turned to the internet and combed through the research on safety, efficacy, and tolerability of biologics—and I was actually comforted by what I found.”

When she finally started taking adalimumab she realized that the medication, in combination with her lifestyle shifts, helped—a lot.

These days, Castaldini has switched to another biologic, which is common in the AS community. “The biologic I take now doesn’t have me anywhere near remission, but it does take the edge off the pain,” she says. “Even though it took me a while to accept it, I do best on a biologic, because it turns the pain dial down just enough for me to be able to think clearly and explore other helpful options.”

Her best advice is to make informed decisions about your treatment—and to take action. “Arm yourself with information about this disease and its treatments, both mainstream and unconventional,” Castaldini urges. “My advice is also not to wait too long before facing the disease head on.”

Embrace Movement and Lifestyle Modifications

Alex Levine, 34, a certified personal trainer and creator of SpondyStrong in Encino, CA, and Sandra Voss, 35, a certified yoga teacher and Spondylitis Association of American Support Group Leader in NYC, both rely on movement to manage their AS symptoms.

But can exercise actually help? The short answer is yes. Recent research found that “exercise is the most important non-pharmacological intervention in patients…[improving] quality of life, physical condition, and symptoms associated with ankylosing spondylitis” as it can benefit spinal mobility, muscle strength, and proper posture. It also found that exercise promotes the secretion of anti-inflammatory proteins called myokines.

Levine, who was diagnosed around 2014, says that NSAIDs—his first prescribed medication—didn’t help. Instead of taking another kind of medication, he decided to solely embrace movement and lifestyle shifts. His core approach? “Gentle movement every day, mental health and medication, not overdoing things, and keeping track of what I do to feel better.”

In addition to stretching daily, he also stays away from sugar, gluten, and grains—although “it’s still a work in progress.” Levine says that while he knows not everyone can or should forgo medication, his inflammatory markers got so much better with regular movement and proper eating.

Voss turns to yoga—as well as biologics and NSAIDs—to manage her AS. She also helps others on their AS journey by leading AS-specific yoga classes.

“AS sort of forces you to slow down and help yourself—to stretch, to meditate [since stress can increase inflammation], to keep track of how you feel after eating certain foods or after stretching. It’s all about small changes here and there,” Levine says.

It may take some time to figure out what works for you, all five of our AS warriors agree. So don’t get discouraged—and remember: You’re not alone in your journey.

Lisa M. Basile

Meet Our Writer

Lisa M. Basile

Lisa Marie Basile (she/her) is a health writer, chronic illness advocate, and author of a few books of poetry and nonfiction, including Light Magic for Dark Times. Her work has appeared in The New York Times, Self

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