Ankylosing spondylitis is a lifelong condition, one that requires regular visits with your doctor to monitor your symptoms and disease progression and make sure your treatment plan is working. How often you should see your doctor depends on a number of factors, including how severe your disease is and how it’s progressing.
But regardless of how often you see your doctor, communicating effectively and honestly — even about topics you might be uncomfortable sharing or may not think are important — is an essential part of getting the best care possible for your ankylosing spondylitis. That will enable your doctor to sort through the information and figure out what’s important, says Brett Smith, DO, a rheumatologist affiliated with Blount Memorial Physicians Group, in Alcoa, Tennessee, and East Tennessee Children’s Hospital, in Knoxville. “Lay everything out on the table,” says Dr. Smith.
Keep in mind that you will need to relay as much information as you can during the limited time you have with your doctor. Be sure to include details about things like how you’re feeling physically as well as how your ankylosing spondylitis is impacting your emotional and mental health, your relationships, and your daily life. The Arthritis Foundation also advises sharing with your doctor information about how well you’re managing your medications and any obstacles that may be preventing you from achieving your goals.
Here’s what to know before starting a biologic, the most targeted treatment option for ankylosing spondylitis.
Here are the types of details you may want to share with your doctor to optimize your ankylosing spondylitis treatment:
1. My eyes hurt and have become sensitive to light.
Eye inflammation is one of the most common complications of ankylosing spondylitis. According to the Spondylitis Association of America (SAA), as many as 40 percent of people with spondylitis experience uveitis (inflammation in the middle layer of tissue in the eye wall) or iritis (swelling and inflammation of the iris, which is the colored ring around your pupil). Eye inflammation, especially iritis, can be serious so see your ophthalmologist immediately if you experience eye pain or redness. Treatment for uveitis typically involves steroid eye drops.
2. I sometimes experience shortness of breath or chest pain.
While these are symptoms everyone should pay attention to, they’re particularly important to mention to your doctor if you have ankylosing spondylitis. That’s because pain in the chest area could be a sign of cardiovascular complications or lung disease, says Smith. According to the SAA, cardiac problems such as inflammation of the aorta, which can impair its function, are present in an estimated 2 to 10 percent of people with ankylosing spondylitis.
Chest pain could also be caused by long-term inflammation of the joints between the ribs and spine and in the front of the chest, where the ribs meet the breastbone. Over time, scarring of this tissue can lead to decreased chest expansion, restricting lung capacity. Deep-breathing exercises and other measures can help with this problem, so it’s important to tell your doctor about your symptoms so that he or she can determine if this is what’s causing your chest discomfort.
Shortness of breath could also be caused by heart problems or complications affecting the lungs that impair lung function. If you experience chest pain, dizziness, or shortness of breath, be sure to tell your doctor about these symptoms.
3. Some days, I’m so tired that I find it difficult to even get out of bed.
Fatigue is common in people who have ankylosing spondylitis and may be caused by a number of things that are related to this condition, such as not being able to get enough sleep due to physical discomfort and pain. Fatigue may also be related to inflammation, according to the SAA: When inflammation is present in your body, your body uses energy to deal with it, which can contribute to feeling tired.
Fatigue is such a hallmark of ankylosing spondylitis that it’s used to evaluate the level of disease activity, says Smith. Tell your doctor about this symptom so that he or she can treat what may be causing your fatigue. Your doctor may also be able to recommend ways to manage your fatigue, such as taking breaks throughout the day or cutting back on your activity, according to the Arthritis Foundation.
4. I feel stiffness or pain in my shoulders and hands.
Your back isn’t the only part of the body that’s affected by ankylosing spondylitis. The condition can also cause inflammation, stiffness, and pain in other areas of your body including your shoulders, hips, ribs, hands, and feet, according to the SAA. Your doctor may recommend medication, physical therapy, or applying heat and cold to relax muscles and relieve joint pain, as well as exercises to increase range of motion, according to the SAA.
5. I sometimes experience diarrhea and bloating, but it comes and goes.
Inflammation of the gastrointestinal tract is common in people who have ankylosing spondylitis and can contribute to gut problems like stomach pain, digestion issues, and diarrhea, says Smith. According to the SAA, up to 60 percent of people who have ankylosing spondylitis are shown to have gut inflammation (which is shown in biopsy when a colonoscopy is performed), even though they may not go on to develop inflammatory bowel disease (IBD) such as Crohn’s disease or ulcerative colitis.
In people who have ankylosing spondylitis, approximately 3 to 4 percent have IBD at the time of diagnosis, and that number increases to about 10 percent after 20 years, according to the SAA.
This link also goes the other way: Just as people with ankylosing spondylitis have a greater risk of IBD, people with Crohn’s disease or ulcerative colitis are at greater risk of developing inflammatory arthritis. “People in GI clinics who have back pain should be evaluated for arthritis,” says Smith.
If you’re experiencing gastrointestinal problems, talk to your doctor about making changes in your diet to prevent inflammation and digestive issues. It may help to keep a food diary and bring it to your doctor so that you can pinpoint problematic foods.
6. I’ve been experiencing sexual dysfunction.
It might not be the easiest thing to talk about sexual problems you’re experiencing, but it’s information that can be helpful for your doctor. He or she can’t help you find a solution unless they’re aware the problem exists.
It may be helpful to know that this problem is not uncommon in people with inflammatory arthritis: In a meta-review of 55 studies evaluating the effects of inflammatory arthritis on sexual function and intimate relationships published in April 2019 in Arthritis Care & Research, researchers found that sexual dysfunction was prevalent in both men and women with inflammatory arthritis, including ankylosing spondylitis. The authors noted, “Sexual dysfunction in [inflammatory arthritis] is associated with pain, reduced sexual desire, erectile dysfunction, fatigue, and mobility restrictions. As sexual health is an important component of well-being, raising clinician and patient awareness of sexual dysfunction associated with [inflammatory arthritis] could facilitate the provision of more holistic care.”
7. I’m feeling down and am struggling emotionally and mentally.
Rates of depression and anxiety are higher in people with arthritis-related conditions, including ankylosing spondylitis, according to the Arthritis Foundation. It’s completely understandable: Having ankylosing spondylitis can be painful and exhausting, and this may lead to exercising less, experiencing poor sleep, and becoming less social and more isolated, which can then worsen depression. “The prevalence is a lot higher than the general population,” says Smith. And the relationship goes both ways, creating an undesirable cycle: Having mental health issues can worsen arthritis symptoms, which in turn can worsen mental health.
Furthermore, according to the Arthritis Foundation, anxiety and depression can lower your pain threshold, and chronic pain can then worsen your anxiety and depression. “Thinking, ‘It’s my job to tough it out,’ can have a significant mental health impact,” says Smith. Keeping it all inside can have a significant negative impact on your mental, emotional, and physical health. According to the Arthritis Foundation, people with arthritis and depression tend to experience more limitations in daily function, are less likely to stick to their treatment plans, and face an increased risk of developing other health problems.
If you feel depressed or anxious, be open about what you’re experiencing. Sharing this information with your doctor is an important step in feeling better, and getting better control of your ankylosing spondylitis.
A study published in October 2019 in Arthritis Research & Therapy found that patients with ankylosing spondylitis have a higher prevalence of depression compared to the general population, but that patient education and feelings of control over disease reduced depression scores. Getting treatment for depression and seeking support from others with the condition may be helpful in reducing depression, says Smith.
8. I often forget to take my medication. Do I need to worry about it if I’m not feeling pain?
There are a number of reasons it’s important to take your medication as prescribed by your doctor. First, symptoms, including pain, may get worse, as can the progression of your ankylosing spondylitis if you don’t, according to the Arthritis Foundation. And if you’re taking medication to control and prevent pain, skipping doses can make the inflammation worse, which can make it harder for the medication to relieve your symptoms when you do remember to take it. Without these medications, which work to “turn off” the autoimmune process, “The chance of progression or reactivation is near 100 percent with discontinuation of [medication],” says Smith. Not taking medication consistently as prescribed may “mean more pain, less function, and greater risk of losing drug response.”
Forgetting to take your medication, skipping doses because your symptoms subside or you experience side effects, or not taking medication because it’s expensive are just some of the common reasons you may not follow your treatment plan as prescribed, according to the Arthritis Foundation.
But today, there are a slew of options you can choose from to help you remember to take your medication, such as smartphone apps or computer alerts that remind you when it’s time for your dose. And if you’re concerned about the price of your ankylosing spondylitis medication, talking with your doctor about your concerns is crucial; he or she may be able to help you find cost-saving ways to get the medication you need under your private insurance or Medicare or Medicaid, says Smith. Whatever the barrier you’re facing that prevents you from taking your medication as prescribed, whether it’s cost, side effects, or need for reminders, your doctor can help you find ways to get the treatment you need.
9. I don’t feel like I have the resources or the support I need to manage my condition.
The Arthritis Foundation and the Spondylitis Association of America are great resources for information and can help you connect with ankylosing spondylitis support groups. “It can be helpful to connect with people who have similar problems,” says Smith.
Support groups can help you gain access to a community in which you can share information, advice, and resources like nutritionists and physical therapists, and you may also be able to find encouragement and a space in which you can share your thoughts and feelings with others who know what’s it’s like to live with ankylosing spondylitis, according to the SAA.
By being open and honest with your rheumatologist, you can take an active role in the management of your ankylosing spondylitis and help your doctor work with you to create an effective treatment plan to control your condition.