A Look At The Difficult Journey of Spondyloarthritis Treatment

2 min read

Many people outside of the axial spondyloarthritis (AxSpA) community do not understand that “treatment” is a full sentence. The symptoms of spondyloarthritis are ever-changing, full-body, and, oftentimes, not well understood. A person's journey to finding a treatment that works for them can take years or even decades – and this journey may require a trusted rheumatologist (which can be hard to find), a support system (also sometimes tough to find), and a lot of trial and error.

It’s time to make the hardships of this journey more well-known.

What medications are people taking for axial spondyloarthritis?

People who live with spondyloarthritis may take many medicines. In fact, nearly all respondents in our 2nd Spondyloarthritis In America Survey report currently using prescription pain medicine, an NSAID, Tylenol, or a muscle relaxant. Additionally, both oral steroids and steroid injections have been used for short-term pain reduction by at least 6 in 10 respondents.

There are numerous medicines that can be used to treat spondyloarthritis pain and symptoms. But year after year, the most commonly discussed treatment in our community is biologics.

A peach colored background with a biologic needle in the top right corner. Who is using biology? 49% of ankylosing spondylitis patients and 56% of non radiographic axial spondyloarthritis patients.

Biologics and symptom management

Despite around half of AS and nr-AxSpA respondents reporting that they take a biologic, nearly all respondents feel their symptoms are not controlled on their current treatment plan. In fact, only 6 percent of AS respondents and 7 percent of nr-AxSpA respondents feel that their symptoms are well-controlled.

Additionally, people who currently take biologics report similar symptoms as those who do not currently take them.

Within the past month, of those who take a biologic (n=398) 94% report back pain and 95% report fatigue. Those who don’t take biologics (n=783) 94% report back pain and 95% report fatigue.

Despite experiencing similar symptoms, those who take biologics report less severe symptoms than those who do not take biologics (according to the BASDAI scale, which measures AS symptoms).

Symptoms are unpredictable

Given the lack of symptom control from their medicines, it is no wonder that 81 percent of respondents feel their spondyloarthritis stops them from doing things other people their age can do.

One respondent was most troubled by the lack of predictability of their disease, stating, “[My symptoms] can change from day to day and sometimes from morning to night. I can feel amazing and then feel awful 12 to 24 hours later, and then feel amazing again 12 to 24 hours [later].”

Background is flames. What caused my flare this time? While 7 out of 10 reported having 5 or more flare-ups in the past year, only 22% understand what their triggers are (n=994)

Despite it all, you are not alone

It often feels that there is no upside to this condition, but you do not have to go through this alone. We have an ever-growing and vibrant community of people who live with axial spondyloarthritis right on this site. And despite daily pain, fatigue, and brain fog, respondents shared some advice below.

Dark blue background with three hearts and three speech bubbles. Speech bubble one: Keep moving just do what you can. Speech bubble two: one day at a time one hour at a time one minute at a time. Speech bubble three: give yourself a break every now and then and don’t stop yourself from a day off if you need it.

Does any of this sound familiar to you? Share your experience with axial spondyloarthritis treatment in the comments below.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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CommunityMember03b5a9 Member
I’ve found that exercise helps a lot! It also seems to lessen my pain. Losing weight is always healthy if done right. It also lifts my spirits. 
1. Anne-Marie Raymond Contributor
 Such a good point <inline-mention username="CommunityMember03b5a9" user-id="6924729"/> , I really find exercise helpful too. It seems to be one of those things that has a multitude of benefits for our physical and mental health. Thanks for your comment! Anne-Marie (Patient Leader)
2. Nicky Flikas Moderator
 <inline-mention username="CommunityMember03b5a9" user-id="6924729"/> thank you for sharing with us. I find the same when I get to move my body. It helps lessen the pain. Hope you are doing well. Nicky (Team Member)
Julie Vallortigara Moderator & Contributor
Hello HU team, This is an interesting report, thank you! I am particularly intrigued by the fact that symptoms reported by both people currently taking biologics and people who don't, are similar. Biologics do something for sure, in my case without Humira it's day and night in terms of the activity of my AxSpa. But we know they don't treat all symptoms. And I think this is where an holistic approach, lifestyle changes can help to manage those 'remaining' symptoms. I have to say that I am quite happy to be managing my AxSpa with only biologics and not other medications. I have never been a fan of taking daily tablets, so that suits me and I feel lucky in a way that this care plan is working for me. I know we are all different, some might need more, while others can manage without any medication. Yet, these results show us some common trend in terms of symptoms we have and the burden of the disease we live with such as unpredictability. Take care everyone 😀 Julie.
maisi Member
Definitely!! Other than seriously over-doing it and maybe significant stressors, I am still a novice at identifying triggers of a flare. Part of the difficulty is that my AxSpA symptoms (which were present for 7 years before diagnosis) have never completely abated - none of them. Consequently, all I have to go on is a lessening of symptoms (around 5 out of 10) or worsening of symptoms. So, in some ways, it FEELS like I have never been out of a flare. And, my rheum has provided no education - for that matter, she had never touched me or examined me. Everything is based on labs and what I report. She works exclusively (myopically) from a medical model...which is a shame.
James Hollens Moderator & Contributor
It's so crazy how the same medications for the same condition can have different affects on us. I'm very grateful that my Enbrel has improved my mobility and reduced my pain hugely but I think a lot of it is down to me working hard to keep active and eat healthily. I struggle a lot with fatigue, but I haven't taking many steps to address this as I am not quite sure how. So if anyone has any tips I would love to know! Thanks for a great breakdown of things. All the best, James (Community Member)

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