Newly Diagnosed with Ankylosing Spondylitis? Here’s What to Know
“The earlier we intervene … the more likely that the outcomes are going to be excellent.”
Prior to your diagnosis, you may not have even heard the name “ankylosing spondylitis” before. Now, you might feel overwhelmed by what this diagnosis means, and how it might affect your life.
“When someone is faced with a new diagnosis of ankylosing spondylitis … it requires a process to understand, to cope with the loss of their healthy self, and then make a plan for how to make the best of the situation,” says Anca D. Askanase, MD, MPH, rheumatologist at Columbia University Irving Medical Center.
What Is Ankylosing Spondylitis?
Ankylosing spondylitis, or AS, affects the axial part of the skeleton—that is, the spine and sacroiliac joints, which are the large joints of the pelvis. AS is an autoimmune disease, which means the immune system is attacking your normal tissue (the spine, in this case). This results in inflammation, back pain, and potential damage to the joints.
“Inflammation produces fibrosed and calcified tissue,” says Dr. Askanase. This does two things: First, it causes the symptoms you’ve probably become familiar with, like pain, swelling, and stiffness. Additionally, if it continues untreated, it can cause the vertebrae to fuse together and eventually become rigid and immobile. This is called spinal fusion, or ankylosis.
Inflammatory Back Pain
The back pain you’ve been experiencing is not your average back pain. Most back pain is actually mechanical back pain, which means it’s caused by things like sleeping in a funny position, lifting incorrectly, or having an accident. Mechanical back pain typically feels worse when you move and improves with rest.
Inflammatory back pain is the opposite: It improves with movement and gets worse with inactivity. That’s because fluid and inflammatory molecules settle in the joints with inactivity, resulting in pain and stiffness. “As we start moving around … the inflammatory molecules get mobilized, and that loosens over the day,” says Dr. Askanase.
Living with AS
There’s no “cure” for autoimmune diseases like AS. Instead, you and your doctor (or a team of doctors) will work together to find a treatment regimen that manages your symptoms and reduces your risk of complications. The most important thing is preventing spinal fusion, when the spine becomes rigid and immobile.
“The earlier we intervene, the earlier we start lowering the inflammation, maintaining mobility, strengthening the muscles, the more likely that the outcomes are going to be excellent,” says Dr. Askanase. “A large portion of that is medication, but a very large portion of it is lifestyle changes.” Learn more here about medications for AS.
Lifestyle changes to reduce your risk of AS complications like spinal fusion include practicing good posture, having a good exercise regimen, seeing a physical therapist, and eating a balanced diet.
“The majority of people that are diagnosed with ankylosing spondylitis have normal lives. I think that that is the goal,” says Dr. Askanase.
Dr. Askanase is a rheumatologist specializing in lupus, Sjogren's syndrome, and vasculitis at Columbia University Irving Medical Center. She is the founder and clinical director of Columbia's Lupus Center and the Director of Rheumatology Clinical Trials.
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(Dr. Askanase) So when someone is faced
with a new diagnosis
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of ankylosing spondylitis, much like a new diagnosis
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of any chronic disease, it requires a process
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to understand, to cope with the loss
of their healthy self,
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and then make a plan for how to make
the best of the situation.
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(mellow acoustic guitar music)
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I could not emphasize any more
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the need for people to educate themselves
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about the disease, the need for people to understand
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the therapeutic options, understand the medication options,
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but also the non-pharmacological options.
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They need to have a team around them:
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their doctor, their physical therapist, their family members.
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They all should be coming together and supporting
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this effort, because it's a big effort.
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The treatment of ankylosing spondylitis
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is a chronic treatment. We don't have a cure.
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We can't fix it overnight.
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It's a long-term commitment, and a large portion
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of that is medication, but a very large portion of it
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is lifestyle changes: an excellent exercise regimen,
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possibly done with a physical therapist or trainer,
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to go over mobility exercises, core strengthening,
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position, posture, things that allow
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the best possible physical function for the individual,
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and then medications that lower the inflammation
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and because as the inflammation gets lower,
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the risk for the chronic consequences of inflammation
is lower.
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There's less damage to the spine.
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The earlier we intervene, the earlier we start lowering
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the inflammation, maintaining mobility,
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strengthening the muscles,
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the more likely that the outcomes are going
to be excellent.
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The majority of people that are diagnosed
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with ankylosing spondylitis have normal lives,
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and I think that that is the goal
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and that is the purpose of going through this exercise
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of working with a physician, taking the medications,
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doing the physical therapy, that the goal
is to maintain normal lives.
- Clinical manifestations of axial spondyloarthritis (ankylosing spondylitis and nonradiographic axial spondyloarthritis) in adults. Waltham, MA: UpToDate, 2020)
- Treatment of axial spondyloarthritis (ankylosing spondylitis and nonradiographic axial spondyloarthritis) in adults. Waltham, MA: UpToDate, 2020)