The way ankylosing spondylitis (AS) progresses, or changes over time, can be different for different people. Some people never have symptoms beyond back pain and stiffness that come and go. Others may go on to have movement problems, a hunched posture, or eye, digestive, or nerve problems.
Treatment is important no matter what stage of ankylosing spondylitis you're in. Medications can slow the spread of AS. Exercise and physical therapy can help you deal with its effects on your body.
If you work with your doctor, take care of yourself with diet and exercise, and take your medications, serious problems are rare.
It’s also possible for some people with AS to go into remission, which means having few or no symptoms. If you’re in remission, keep following your treatment plan. Most people who stop taking their medication when they feel well see their disease come back, or “relapse,” within a year, says Joerg Ermann, MD, a rheumatologist and assistant professor of medicine with Brigham and Women's Hospital. You can ask your AS doctor if they’d be willing to lower the doses of your medications.
Early Ankylosing Spondylitis
AS is a type of arthritis that causes inflammation along your spine. It most often starts in the sacroiliac joints at the base of your backbone.
The pain may start on one side, then move to both sides over weeks or months. It might spread to your buttocks. If you wake up in pain, you usually feel better as you move around.
Unlike back pain from an injury or too much exercise, it won’t go away over time. But you can have symptom-free periods between flare-ups.
As your AS gets worse and your body uses more energy to fight the inflammation, you may feel a tiredness called fatigue.
Treatment for early AS: Work with your rheumatologist on a plan to ease your pain. You'll control the pain and inflammation with nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen.
Exercise is so important for people with AS that it's considered part of your treatment. It:
- Helps keep AS from getting worse
- Eases pain and stiffness
- Helps ensure you can get around well
A combination of aerobic, strength-building, stretching, and balancing exercises is best. Work with a physical therapist (PT) on a safe and effective exercise plan.
An anti-inflammatory diet may also help keep AS from getting worse. Eat lots of:
- Leafy greens
- Brightly colored veggies like peppers and tomatoes
- Cruciferous vegetables like broccoli and cabbage
Avoid highly processed foods made with lots of sugar, white flour, unhealthy fats, and chemical additives.
If you smoke, quit as soon as possible. Smoking can play a role in the chances of AS getting worse, Errman says. Talk to your doctor if you need help quitting.
The Stages of Ankylosing Spondylitis
AS often slowly moves up from the base of your spine to your neck. Imaging tests like MRIs can show how serious it is based on how much of your spine is affected. The changes in your spine can be hard for doctors to spot in the first few years, then become more visible.
If the inflammation from AS gets worse, it may affect other parts of your body besides your spine. It often happens in the entheses, the spots where ligaments and tendons attach to your bones. You might have pain in your:
- Ribs
- Shoulders
- Hips
- Thighs
- Heels
You can get other inflammatory conditions, too. About a third of people with AS have eye inflammation at least once, often in the iris. Symptoms include:
- Pain
- Red, watery eyes
- Blurred vision
- Sensitivity to light
If this happens at any time over the course of your AS, get care right away to prevent vision loss.
Up to 70% of people with AS have inflammation in their digestive tract, though many don't notice any symptoms. Up to 10% get an inflammatory bowel disease (IBD) like Crohn’s or ulcerative colitis. About 10% of those with AS get psoriasis.
Treatment as AS progresses: NSAIDs can have side effects, including liver and kidney damage. So be sure to take them exactly as your doctor prescribes. If you don't get relief from them, your doctor might suggest a stronger drug called a biologic.
The first one you'll try will probably be a tumor necrosis factor inhibitor (TNFi) like:
- Adalimumab (Humira)
- Certolizumab pegol (Cimzia)
- Etanercept (Enbrel)
- Golimumab (Simponi/Simponi Aria)
- Infliximab (Remicade)
If TNFis don’t help enough, your doctor may try a biologic called an IL-17 inhibitor, like ixekizumab (Taltz) or secukinumab (Cosentyx).
You might also work with an eye specialist, a gastrointestinal (GI) doctor, or a dermatologist.
Advanced Ankylosing Spondylitis
If you have more advanced AS, your doctor may tell you that your spine has fused. That happens when new bone grows between some of the small bones that form your spine, joining them together.
The more this happens, the less movement you have in your spine. It happens slowly, but it sometimes leads to complete spinal fusion over time.
Fusion in your spine can put you at a high risk for fractures. It can also make your spine curve forward, leading to a hunched-over posture. Physical therapy can help.
Scarring can also spread to the joints between your spine and ribs. And it can move to the areas where your ribs meet your breastbone. You may find it hard to take deep breaths. A respiratory therapist can show you ways to breathe easier.
When advanced AS scars the nerves at the base of your spine, it can lead to neurological problems. They could include a condition called cauda equina syndrome, which may cause:
- Incontinence
- Sexual problems
- Pain and weakness in your legs
If this happens, you'll work with a neurologist to manage the symptoms.
AS does not usually lead to these serious problems. To avoid them, take your medications as prescribed and follow your doctor's instructions. Go to all your checkups, even when you’re not having symptoms.
When to Call Your Doctor
Pick up the phone if you notice new or worse symptoms. Call your doctor right away if you have AS and notice:
- Breathing problems
- Vision problems
- Pain in your chest
- Serious pain in your back or joints
- Unexplained weight loss
- Noticeable stiffening of spine
