Women Don’t Get AxSpA?! This Old Story Needs to Go!
I have recently changed rheumatologists. I have been living with AxSpA for seven years, if we don’t count the years I had symptoms but was not diagnosed with a particular condition. After all this time, why is it still challenging to explain my medical history to a specialist? And how do I get that feedback that my diagnosis is still being questioned?
Women can experience AxSpA differently
I attended a brilliant webinar last month on "Women and AxSpA: Diagnosis and Management" organized by The Arthritis and Musculoskeletal Alliance. Three rheumatologists were talking about the diagnosis and management of AxSpA for women, based on research and case studies. The three talks were very interesting and reassuring for me. I noted these facts during this webinar:1
- Men tend to have more radiographic forms of AxSpA / AS compared to women
- Women are not doing as good on anti-TNF as men, and they are more likely to switch treatment.
- Women tend to have a high immune system response, whereas young males show high inflammation response.
- Women have more peripheral symptoms with extra-articular manifestations than men (apart from uveitis), including: dactylitis (severe inflammation or fingers and/or toes joints), enthesitis (inflammation of the entheses, the sites where tendons or ligaments insert into the bone), asymmetric mono-oligoarthritis (inflammation in one of the paired joints on one side of the body only, i.e. one elbow, one hip, one knee).
The way we respond to treatment is different
Then, it makes sense to me that our symptoms and the way we respond to treatments will be different. I think it’s important for us women to remember that many research studies on diseases are done, at least at the preclinical stages, on male models of the condition.
On top of that, there is the heritage that we have to live with: originally AxSpA was thought to be a male disease. Therefore, our knowledge of the onset of the disease, various symptoms, and the effect of treatments, is lesser when we talk about women cases compare to men. Finally, there is a whole area where we don’t know enough: the role of female hormones in that disease. I have certainly noticed that my symptoms get worse depending on the phase of the menstrual cycle I am in.
This aligns with my experience
My disease doesn’t show up on x-ray so I fall into the category of non-radiographic type. I have flares in peripheral joints, typically in feet with dactylitis, enthesitis in achillea’s tendon and elbow, and typical asymmetric mono-oligoparthritis in knee and hip. So, I have had peripheral manifestations along with some axial joints issues.
Based on the knowledge listed above, all this makes me tick the boxes for a diagnosis with AxSpA with "female" trend rather than what men would typically have with AxSpA. While this is obvious to me knowing the episodes I’ve had, I am still wondering why I have to prove myself again to a healthcare provider who may doubt my diagnosis. There’s a need to raise awareness!
Luckily, I have also met rheumatologists and therapists who had the level of knowledge and expertise to see my condition for what it really is. There’s a great article entitled "Women and AxSpA: The Way Forward"2 written by Emily Clarke who I had the chance to do an AxSpA self-management course with.
I recommend reading this article. She summarizes well why us women might struggle along the patient pathway to get the same outcomes as men, such as the correct diagnosis, and consequently a delay in getting an adapted treatment. Attached to this article is a useful infographic done by ASIF (Axial Spondyloarthritis International Federation) showing the prevalence of diagnosis and misdiagnosis as well as time to reach a diagnosis for women. As written at the bottom of this infographic: “More can be done for women with AxSpa to ensure that they get the right diagnosis, at the right time, and receive the treatment they need.”2 I couldn’t agree more.
If you are curious to find out more about this topic, you can read this excellent scientific article published recently in the supplement of Rheumatology journal on AxSpA.
Does reading AxSpA patient stories help you in your journey?