Why I’m Not on a Biologic...There’s a conversation my rheumatologist and I have on replay at every appointment I attend. It starts with my doctor sharing the results of my blood tests and imaging reports...Reactions0reactionsComments5 comments
Newly diagnosed Ankylosing Spondylitis...Hi all 👋 I hope you're all doing well. I wanted to seek some advice on my recent AS diagnosis. I dont know anyone with the condition so Im hopeful...Reactions0reactionsComments4 replies
Reducing Medication Intake Is My Agenda Whilst Living With AxSpa...After my diagnosis I visited doctors to seek advice, discuss treatment recommendations, and find ways to cope with AxSpa symptoms. From the start, I have always had in mind to...Reactions0reactionsComments13 comments
Uvitis ...So my eye Dr said that I have degenerative charges to my vision my vision is blurry and a symptom that I've also experienced is double vision and they are...Reactions0reactionsComments12 repliesAxial Spondyloarthritis Comorbidities
My Journey as an Athlete Living With AS...I have been an athlete most of my life. I discovered the sport of tennis when I lived in France at the age of 7. The beginning of a beautiful...Reactions0reactionsComments5 comments
My Experience Getting Infliximab Infusions...I get inflixmab infusions (under the brand name Inflectra) every four weeks. Inflectra is a biosimilar of Remicade. I get 6 vials of 100mg infused and have been at this...Reactions0reactionsComments3 comments
Overall stiffness...Hi All, just wanted to ask as this is all new to me. Do you experience stiffness? Stiffness in the hips, sacroiliac joints and spine to the point where you...Reactions0reactionsComments4 replies
Why don’t we have a live chat feature?...Surely there are people who need to talk to others more frequently....Reactions0reactionsComments1 repliesAnkylosing Spondylitis
Identifying Flare Ups...How do most people with AS accurately identify a flare up?...Reactions0reactionsComments3 replies
biologics or steroids and having AnkylosingSpondylitis....If you’re not on biologics or steroids right now and fully vaccinated with regards to my AS am I classed as immune suppressed? Also is my immune system over active...Reactions0reactionsComments2 repliesAnkylosing Spondylitis
Calcium supplements if you have AS?...I have been told I have osteopenia - the beginnings of osteoporosis. Is taking a Calcium ssupplement safe if you already have fusion in your spine? I exercise regularly, but...Reactions0reactionsComments1 repliesTips & AdviceAnkylosing SpondylitisComorbidities
Discovering a Different Version of Myself With AS...Developing AS changed my life in in all kinds of ways. Things I had enjoyed were now off-limits. Plans I’d made were cancelled. People I had felt connected to grew...Reactions0reactionsComments1 comments
Explaining Spondylitis to Kids...Two facts about me: If a kid has any questions, I am going to find the best way to answer them. But, that is not always easy. Axial spondyloarthritis is...Reactions0reactionsComments3 comments
Keeping fit...Hi All, How do you continue to keep fit with AS?...Reactions0reactionsComments9 replies
Anyone else have taste and appetite changes?...Hello! As soon as I got my first infusion, my taste changed. I described many things as tasting like “dirty lake water”. It use to last for a week or...Reactions0reactionsComments3 repliesDiet & NutritionAnkylosing SpondylitisFlares
Life Has Flipped Upside Down...I'm a single mother of 2 boys. Before my diagnosis I worked as a full time carer for the elderly 8 days on to get 2 off. I loved everything...Reactions0reactionsComments1 comments
Interstitial cystitis and Axial Spond...Hi, I’m in a really bad flare up (spine, ribs, hips, shoulders, wrists and feet), and I have now got interstitial cystitis which adds to my problems at night! Does...Reactions0reactionsComments3 repliesAxial Spondyloarthritis
Three Years Since My AS Diagnosis...You would think getting a diagnosis would have answered all the questions about what was going on in my body. The answers to questions like: What led me to be...Reactions0reactionsComments3 comments
Changing to a Plant-Based Diet...Nearly two years ago, I decided to try a plant-based diet in hopes that it would reduce inflammation and improve symptoms I experience related to axial spondyloarthritis. Let me preface...Reactions0reactionsComments1 comments
Joy Tilbrook...Joy works for a disability charity and lives in London. After having symptoms throughout her teens and early twenties, Joy’s symptoms intensified at the start of covid lockdown at in...
