Post-Appointment | Conversation Guide | Top 3 Questions | What To Ask Your Doctor
A new diagnosis of nonradiographic axial spondyloarthritis, commonly abbreviated as nr-axSpA, may have you wondering what happens after that initial rheumatology appointment. As you get started on treatment, you may have questions about costs associated with treatment, as well as how to take medication, communicate with your health care team, and manage the physical, emotional, and psychological impacts of living with nr-axSpA.
MySpondylitisTeam members who recently received an nr-axSpA diagnosis frequently ask about what comes next. “I’m new to this diagnosis and have much to learn!” one member wrote.
Getting an nr-axSpA diagnosis can take time. Unlike other types of spondyloarthritis, nr-axSpA does not appear on X-rays and is not always apparent on an MRI scan. Once you have an nr-axSpA diagnosis, it’s important to get off on the right foot as you begin your treatment journey. Understanding how to manage your condition over time can help you feel better and improve your quality of life.
Your nr-axSpA treatment plan will likely include a combination of physical therapy and medication, which is considered standard care. Physical therapy and appropriate exercise plans for people with nr-axSpA are designed to improve strength and flexibility, correct posture, and boost cardiovascular health.
When you’re first diagnosed with nr-axSpA, your rheumatologist may advise you to start taking a nonsteroidal anti-inflammatory drug (NSAID). This is often the first-line treatment. Recommended NSAIDs include over-the-counter medication, such as naproxen (sold under the brand names Aleve and Naprosyn) or ibuprofen (Advil and Motrin). There are also prescription NSAIDs, such as celecoxib (Celebrex) or meloxicam (Mobic). NSAIDs generally come as pills or capsules to be swallowed, and they should be taken as advised by your doctor.
Depending on your particular condition, or if NSAIDs prove ineffective, your rheumatologist may recommend a biologic drug. These medications target inflammatory proteins in the immune system that are involved in inflammatory diseases like spondyloarthritis, rheumatoid arthritis, and psoriatic arthritis.
Biologics must be given as either an injection under the skin or an intravenous infusion. In many cases, biologic drugs can be self-injected at home on a weekly, biweekly, or monthly schedule.
If you and your doctor determine a self-injected biologic therapy is an appropriate treatment option, a knowledgeable clinician will teach you how to properly self-inject. A health care provider will likely supervise your first self-injection and offer tips on how to make it as smooth and comfortable as possible. Many people with nr-axSpA find self-injection is a convenient way to take biologic medication and also cuts down on doctor visits.
In some cases, the first biologic medication you use might be ineffective, so your rheumatologist may have you try another type. Biologics work in different ways, and some may be better than others for a particular case of nr-axSpA. You might need to try different options for a few months to find the right medication for you.
Biologic medication can be expensive. If you’re concerned about your medical bills or health insurance coverage, talk to your rheumatologist. You may qualify for various types of financial assistance.
For instance, manufacturers of biologic drugs may offer copay assistance to offset out-of-pocket insurance expenses. Some of these companies also provide financial assistance for uninsured people with nr-axSpA. For people who qualify, a number of nonprofit foundations also assist with deductibles, health insurance premiums, and other costs related to health care needs for nr-axSpA.
Drug companies usually offer patient assistance programs to help you determine what kind of financial assistance you may be eligible for. Some companies also offer nursing call lines that can answer questions about how to take your medication. If you and your doctor decide a biologic drug is right for you, check with your doctor about the drug’s patient assistance program.
Open communication with your doctors is essential for your nr-axSpA care. Once you have a diagnosis, be sure to discuss it with your primary care physician or any other medical specialists on your health care team. When all your doctors know about your condition and your nr-axSpA treatments, they can best care for your whole-body health and help you avoid dangerous drug interactions. For that reason, it’s also important to keep your rheumatologist up to date on any medications prescribed by your other health care providers.
If you’re starting a new medication for nr-axSpA, talk to your rheumatologist about potential side effects and report any you experience. Many side effects are mild and can be managed to improve your comfort with a new drug, but some rare side effects can be serious. Biologic drugs increase the risk of infection, so symptoms such as fever, rash, dizziness, or chest pain should be reported to your doctor immediately.
You will be monitored for side effects if you are taking medication. Follow-up visits and blood tests will help keep side effects to a minimum.
If you have persistent pain from nr-axSpA despite sticking with treatment, let your doctor know. They can help you find options to manage your pain. You and your rheumatologist may also determine that a referral to a pain management clinic or pain specialist may be helpful for you.
Taking steps to protect your overall health will help address nr-axSpA symptoms. A healthy diet, appropriate exercise, and stress management techniques can help improve your physical and mental well-being.
Research shows that some foods contribute to inflammation and may aggravate inflammatory health conditions. Your doctor can provide a referral for a dietitian or nutritionist if you need help designing a healthy diet that works for you.
Stiffness, pain, and fatigue from nr-axSpA can lead to a more sedentary lifestyle. Studies show physical activity and exercise, such as stretching and Pilates, can improve mobility and reduce disease activity (the effects of nr-axSpA on the body). A physical therapist can help you find appropriate levels of activity to do at home or in a gym.
Emotional stress, anxiety, and depression are all too common with a diagnosis of nr-axSpA. Uncertainty, pain, and physical limitations can contribute to feelings of distress. In turn, stress has been shown to increase disease activity in autoimmune diseases.
Spending quality time with family or friends, connecting with an in-person or online support group (such as MySpondylitisTeam), and practicing relaxation techniques like meditation or yoga can reduce stress.
MySpondylitisTeam members often express their appreciation for the support they get from each other. One member wrote to another: “You’ve come to the right site for support and for good information about your disease. It’s OK to grieve for the way your life used to be. Sending you gentle hugs. 🤗”
“I used to feel all alone — no one understanding the horrible pain, doctors thinking there's nothing wrong with you,” wrote another member. “I could go on and on. But this website has helped me. Stay with us. You will have all the support you need.”
“I think it’s normal to need time to process new information and come to a full understanding of what your body has,” shared another member of MySpondylitisTeam. “Diagnosis can come with relief, as well as anger, frustration, sadness, and more questions. Please take time to care for yourself. One day at a time.”
MySpondylitisTeam is the social network for people with spondyloarthritis and their loved ones. On MySpondylitisTeam, more than 89,000 members come together to ask questions, give advice, and share their stories with others who understand life with spondylitis.
Are you getting started with your treatment journey for nonradiographic axial spondyloarthritis? Do you have tips for people who are newly diagnosed with nr-axSpA? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Post-Appointment | Conversation Guide | Top 3 Questions | What To Ask Your Doctor