How does axial spondyloarthritis affect women differently and what does the research tell us?

How does axial spondyloarthritis affect women differently? Consultant rheumatologist and Associate Professor Dr Helena Marzo-Ortega discusses the latest research and what the future holds.
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00:00 Introduction
01:17 Meet Dr Marzo-Ortega
03:40 Sex vs gender
05:24 What is axial spondyloarthritis?
08:43 Why is there a delay to diagnosis of axial SpA?
10:45 Women and axial SpA
11:52 Women and men present differently
12:46 Impact of axial SpA
14:20 Medications
17:17 Immune system differences
20:25 A woman's journey is not linear
22:58 Improving communication
25:52 Q&A
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This video was originally recorded live on / nationalaxialspondyloa... on 24 November 2021.
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[@fineartlifestyling]

I just wanted to add to that hormonal component, women tend to get less symptoms during pregnancy due to the immune system’s response being redirected to the pregnancy, giving alleviating effect to the inflammatory process that usually plagues AS patients. If you are also suffering from other issues such as PMDD, endometriosis, PCOS, it becomes yet another millionth layer that confuses this whole diagnosing process. What’s interesting is that most of those ailments listed are all inflammatory diseases as well. So women should be screened for AS perhaps even within the endocrinology and gynaecology department. This is just so easy to confuse with so many layers hiding. That’s at least my experience

[@virginiaalderson4793]

I found this very informative. I was diagnosed 2 years ago with Axial Spa when I was 50, when I started going through the menopause. I am HLA B27+, MRI scans showed bilateral sacroliitis. I had terrible neck and back stiffness for 6 months aswell. I suffered with archilles tendonitis a lot in my early twenties, sacroiliac pain for all of my trimester in my first pregnancy. Knee pain, terrible rib pain, plantar fasciitis through out the years. Every symptom over my adult life was treated as individual problems. It wasn’t until 2 years ago I suffered badly for a prolonged period that all the dots were joined together and was referred to a rheumatologist. Biologic therapy with meloxicam has helped greatly with the axial problems. Recently a X-ray of my pelvis is now showing spondylotic issues with my lumber and lumbar sacral joints, is this AS or osteoarthritis given my age now ?. My flares are now generally peripheral with awful fatigue.

[@NASSCentral]

Hi Virginia, I'm so sorry to hear it took so long before all the dots were connected. Sadly we still hear this a lot, but we're working on improving it. I'm glad your symptoms are improving now. In terms of fatigue and peripheral symptoms, we have some more videos on our My AS, My Life pages: nass.co.uk/managing-my-as/my-as-my-life/ I hope that's helpful. Generally rheumatologists should be able to let you know from the scan and report whether the changes are axial SpA or osteoarthritis. If you have any more questions or would like to chat further, feel free to email me [e-mail] ~Zoë

[@laciehunt9535]

No comments?? Ugh we need more education on this topic!!

[@NASSCentral]

Hi Lacie, we know this is a really important area for research and awareness. We're in the early stages of some work and will be asking for people to take part in research and further work in the comings months ~Zoë

[@ajpello2003]

@@NASSCentral hi is there a network of providers u can share? I’m having a very difficult time getting diagnosed or finding a rheumatologist who is educated on how axspa appears in women differently. I have severe thoracic and cervical damage amongst connective tissue damage in my shoulders, rib cage and PF in my lungs.

[@NASSCentral]

Hi @ajpello2003 Sorry to hear that. We don't have a list of consultants we recommend, but you can look up consultants on your local hospital and then check to see if they are a member of the British Society for Spondyloarthritis (BritSpA), as members have an interest in axial SpA: britspa.co.uk/who-are-we/ I hope that's helpful, but you can also get in touch with our helpline if you need further advice nass.co.uk/contact-us/ ~Zoë

[@ajpello2003]

@@NASSCentral thank u no worries is there an American branch?

[@NASSCentral]

@ajpello2003 I'm afraid we only have branches in the UK. I'd recommend contacting Spondylitis Association of America: spondylitis.org/ ~Zoë

[@gemmagroves3825]

Jeez ive been suffering with horrendous pains in hips back (do have a few herniations and a couole tarlov cysts) hla b27 posative. Have had sooo many a and e visits and hospital stays in orthopaedics , nobody understands the pain 😢 and quality of life especially after years of being sporty , swimming , running , horse riding. Mri 7 years ago showed no inflammation and due for another mri on Thursday. If i could atleast put a name to whats wrong with me and start treatment as this has been going on since i was 30 and 44 in june. Periods are just horrendous now as it adds to the pain. Also need a colonoscopy done again soon and cant bear the thought of sitting in the chair with sturrups , due to the sheer pain. How do you explain to a dr or person who doesnt have to live with that pain. X

[@NASSCentral]

Sorry to hear that you've been going through all of that. Good luck for your rheumatology appointment. Please do contact our Helpline if there's anything we can help with: nass.co.uk/contact-us/ We also have a section of our website that shares lots of practical tips on managing your symptoms: nass.co.uk/about-as/your-space/ ~Zoë

[@xasm83]

this statistics is a bit biased we know that women are diagnosed mostly when the illness is more articulated which means there many women there with mild disease activity who are not diagnosed and that amount is larger then the one for men

[@marymcguigan3408]

Very interesting, I've been diagnosed with cervical and lumbar spondylosis. But I feel that I have similarities to AS.

[@NASSCentral]

Thanks for sharing, I hope the talk was interesting ~Zoë