Ask the nr-AxSpA Advocates: Diagnosis and Progression Worries

Editor's note: You can read Part 1 of this series here.

The spondyloarthritis community has changed a lot these past few years as clinical diagnoses change, too. The common diagnosis of ankylosing spondylitis (AS) is becoming more nuanced. There is now a diagnosis for people with AS-like symptoms but not the typical X-ray or MRI results. This diagnosis is called non-radiographic axial spondyloarthritis (nr-AxSpA).

We have several advocates on our team who live with nr-AxSpA. We decided to ask Jamie, Dyana, Arden, and Sarah I. about what it has been like finding community as diagnosis names change, and whether they worry about the progression of their condition. You can read their answers below.

Have you seen the spondyloarthritis space change since the time you have been diagnosed? Do you think more people are becoming aware of nr-AxSpA?

Jamie: "When I’m reffing hockey we have a joke when we miss a call, and it’s pretty fitting for this disease: Awareness, zero! If I tell someone the full name of the disease, I’m usually met with a blank stare or some form of 'uh…what?' I generally underplay what I’m going through or explain it in the most simplistic terms that I can. When people have questions, I’m happy to explain more, but I also don’t want to explain the disease if others don’t really care to listen. From my understanding, there were quite a few changes in the medical community ahead of my diagnosis, particularly in the switch from using AS to using AxSpA. I think it definitely helped me get a diagnosis, but it also can lead to some confusion because not everyone has adopted the new terminology."

Dyana: "I do believe that with the launch of AxialSpondyloarthritis.net and associated social media accounts last spring that more people who live with this condition are finding it. Prior to joining this site, I was already following the AnkylosingSpondylitis.net Facebook page. I know for me personally, I share my articles on my social media accounts for my family and friends to read. Because of my diagnosis journey, I’ve even had several friends reach out to me to say that I’ve motivated them to keep advocating for themselves in search of their own chronic illness diagnoses, as well as being an inspiration because of my discipline in putting my health and fitness journey first."

Sarah I.: "It has been changing. From the medical field perspective, more doctors are becoming aware of the categorization of spondyloarthritis, mainly due to rheumatology physician groups being more vocal about early diagnosis. The disability community online has also been instrumental in getting the word out about the different ways folks can present with spondyloarthritis to take away some of the mystery for people who may be wondering if this is what they have. I think we will see more awareness over the next few years as non-rheumatology doctors and healthcare practitioners become more familiar with it and get more comfortable relying on clinical presentation over hard numbers or imaging results to diagnose this in the clinical setting."

Are you worried about the progression of your condition? Has your rheumatologist helped you understand the risks for progression, or have you been mostly left to do your own research?

Jamie: "Of course I’m worried about it. My rheumatologist told me the next thing to be concerned about is fusion, typically occurring after 10 years of active disease. My mom was diagnosed after potentially 30 years of active disease, so our approach has been for me to get a diagnosis and treatment in my 20s to hopefully slow the progression and either avoid or improve some of the progressions she has had to deal with. The biggest frustration is the unknown. A lot of this disease is individualistic, so there’s really no knowing how it may progress for me. Right now, my focus is getting back to being a high-performance athlete. I’m not positive, but I might be the only hockey referee at my level who lives with any form of AxSpa. It’s a small thing, but it certainly serves as motivation for me. I truly believe if I can maintain a high level of fitness it will benefit me in the long run. Also, I don’t have anyone to look at and say, ‘If they can do it, so can I.’ Maybe if I’m successful, I could help someone else down the road."

Dyana: "To a degree, yes. I do worry about the progression of nr-AxSpA, but I am more focused on improving my overall quality of life than allowing the feelings of worry to take up too much stock in my head. I have been lucky that my first biologic medicine has given me back a part of my life that I hadn’t had in a few years, and I’ve been able to live with less pain. As someone who is naturally a pessimist and a worry-wart, I do my best to not be consumed by worrying about how bad it could get or if it’ll eventually turn in AS. I do my absolute best to focus on things I can control. I felt a sense of relief with not having to search for a diagnosis anymore because it was an exhausting feeling. Worrying about the possibility of progression can be exhausting too. My rheumatologist has explained the risks for progression and, hopefully with the use of my biologic, that will slow progression. She also explained that my nr-AxSpA may not progress to AS. Unfortunately, it’s not something that can be predicted at this time."

Arden: "At first I was worried about my progression. Based on reading other peoples’ stories, I was pretty scared. I’ve asked my rheumatologist about it and haven’t really gotten a straight answer. I have been very proactive about getting on the right medicine to control the inflammation as well as changing my diet, doing daily exercise, and keeping my stress under control...Hopefully getting diagnosed early, getting treatment early, and making the necessary lifestyle changes will mean that my future will look good, but you never know."

Sarah I: "I do worry about it, but I have been very lucky to have a rheumatologist who understands me, my career goals, and the limitations I am and am not willing to live with. He takes my pain seriously and bases my treatment on how I feel my symptoms are controlled, which has given me the freedom to work uninterrupted and resume some of the household activities I was previously unable to perform. Since symptom worsening is generally linked to progression, the fact that my symptoms are better than they have ever been gives me a lot of relief on this subject. He has also done a great job of keeping me informed of what to expect and how we are trying to control the condition, so I am less afraid and more prepared for the challenges and changes I'll have to anticipate in the future. I definitely worry that if I have to move for my continued medical training that I will lose this rapport and trust, but I am glad to have an expectation to hold future rheumatologists up to. They are an integral part of managing nr-AxSpA."