“What’s recommended for patients with ankylosing spondylitis is that they maintain a good relationship with their doctor, particularly their rheumatologist,” says Themistocles Protopsaltis, MD, spine surgeon at NYU Langone Hospital.
Like other autoimmune conditions, ankylosing spondylitis (AS) occurs in a cycle of remission and relapses (often called a “flare”). Finding the right AS treatment to maintain remission can take a lot of guess-and-check work, and you and your doctor, or doctors, will need to have a lot of back and forth to get it right.
For example, you could be trying a medication for AS but not seeing results, meaning you’re unable to stay in remission. By not telling a doctor, you might continue to relapse and cause AS symptoms—and the disease may worsen or cause more damage to your body.
“Once the pain becomes more intense, then you’d want to visit the doctor more frequently so that they can modify and make sure that we’re keeping the disease at bay,” says Dr. Protopsaltis. “It might involve changing the medicines a little bit.”
Your rheumatologist isn’t the only doctor to have a good relationship with. When AS progresses, you might have fusion of the vertebrae, leading to a stiff and immobile spine. At this point, it might be time to develop a relationship with a spine surgeon.
A spine surgeon for AS can help advise if surgery is right for you, and if so, when it’s needed. Your spine surgeon can “make sure that the spinal alignment is being maintained throughout,” says Dr. Protopsaltis. These are done with annual or biannual X-ray checks.
The key is to keep your doctors in the loop. This can help address flares immediately, help you find the right treatment, and help prevent your condition from progressing or causing complications.