Asking questions is crucial to good communication with your rheumatologist. If you don’t ask questions, your doctor may assume you already know the answer or don’t need more information. By knowing ahead of time what to ask, you ensure your rheumatologist understands what’s most important to you. This will help you get the most out of your visit.

If you’ve received a diagnosis of nonradiographic axial spondyloarthritis (nr-axSpA) — a condition related to ankylosing spondylitis — you may have questions regarding your condition, your health care treatment options, and what to expect. MySpondylitisTeam interviewed rheumatologist Dr. Siddharth Tambar about some of the most common questions he receives from people newly diagnosed with nr-axSpA. If you have the same questions, his answers below may add to your knowledge and help you have better conversations with your doctor.

1. How Did I Get nr-axSpA?

It’s not something that you have caused or that you’re responsible for — it’s something that you’re predisposed to and happens in the normal course of life. There is something genetic that makes your immune system a little bit more prone to inflammation and attacking itself. Something seems to trigger that, and we don’t really know what that trigger is in everybody. Triggers are probably a series of things that naturally and normally happen in your life and development that end up leading to this autoimmune condition.

2. How Long Will I Be Living With axSpA?

This is a chronic, long-term condition. There is probably a small percentage of people who may have this for only a few months, but for most people, it’ll last years to decades. While that can be frustrating to hear, the good news is that there are good treatment options available if needed. Those treatments range from really mild to medications that are dramatically stronger but much more effective in terms of controlling inflammation, improving pain, and improving your function and quality of life.

3. What Are the Treatments for nr-axSpA?

There are a lot of things you can do that help in terms of dealing with pain, coping with symptoms, and maximizing your outcome. If you’re paired up with the right rheumatologist, nr-axSpA is very treatable. You should be hopeful, because the treatment options are quite good and really revolutionary. It takes work with your physician, but the chance of getting back to your normal, productive, high quality of life is very high.

Medications

Over-the-counter anti-inflammatory medications help manage pain. If your symptoms are flaring, you can take a one-week course of steroids, but you want to be careful about doing that too often. Steroids have side effects, long term.

Biologic medications, which are generally taken by injection, do a stronger job of controlling the inflammation in the spine and can really make a big difference in terms of your overall condition. The biologic medications that have become available over the last 20-plus years do a great job of preventing nr-axSpA progression — and not only controlling active inflammation but also preventing it from progressing.

There are a number of different options that are taken in different ways: either self-injectable or by IV, or there’s now also one oral medication. The good news is that we have so many options now that, even if one is failing, trying another one may get you back on track. The hope is that long term, by controlling inflammation, you’ll prevent your condition from progressing, and you’ll prevent a lot of the chronic problems that can develop if you’re not treated.

Speak with your physician to make sure you understand the potential risks and benefits and feel comfortable with what’s involved.

Exercise

Doing the right kind of strengthening exercises to help protect the spine is key. Exercise, such as yoga or Pilates, helps to strengthen the muscles around an area that’s inflamed or chronically damaged, which will help with stability and pain relief long term. Anything that helps with core strengthening or hip strengthening will help with the lower back and SI joints [sacroiliac joints]. Same thing when it comes to treating the upper back and neck as well. That’s something that you can safely do on your own at home or with assistance from either a physical therapist or trainer.

Supplements

Supplements don’t stop the progress of the condition, but some can help with pain and inflammation. These include glucosamine, omega-3, and curcumin or turmeric. Please always discuss supplements with your physician to make sure that they don’t interact with anything else that you’re taking.

Diet Changes

From a dietary standpoint, there’s not really great evidence that specific diets will change the progression of the condition. But we know that there are certain foods and diets that can make a difference in general, from an inflammation standpoint.

Some good rules of thumb are to minimize red meat and drink alcohol in moderation. Limit processed foods and refined sugars as well. If you can follow those, you’re probably on the right track.

To help you better prepare for your rheumatologist visit, MySpondylitisTeam has created the interactive nr-axSpA Doctor Visit Checklist.

Watch videos modeling conversations between someone newly diagnosed with nr-axSpA and their doctor as they discuss treatment options, side effects, and lifestyle changes.

Make the most out of your next rheumatology appointment with a custom set of questions for your doctor. Complete a brief questionnaire to receive personalized questions to ask about your treatment.

Start your spondylitis treatment journey on the right foot. Find out what comes next after getting your diagnosis and prescription for nr-axSpA treatment.