Many people who are diagnosed with axial SpA have symptoms appear gradually, but for 19-year-old Scarlett, the onset was quick and vicious.
Scarlett was an athletic teenager who loved to exercise – from sprinting to weightlifting. She was even training to become a personal trainer. Until 2024 when, after spending 6 months travelling around Southeast Asia, she started to experience a lot of pain in her knees. She assumed she’d aggravated them through exercise, so she gave herself some respite for a couple of weeks. But strangely they didn’t improve.
She visited a couple of physiotherapists who suggested she continued stretching and resting. Nothing worked, and she began to struggle to walk. It was then that she realised that this may not be a standard sports injury. So, she booked an appointment with her GP. Gratefully, the GP took her concerns seriously and ordered a range of blood tests including Rheumatoid Factor and HLAB27 gene testing. All these tests came back negative – even her inflammatory markers. Everything was in the normal range.
Like many people who go on to be diagnosed with axial SpA, the GP was satisfied with Scarlett’s blood tests and closed the book on her case. But Scarlett knew that going from an incredibly active teen to barely being able to walk was not normal. She persisted with her GP and eventually her GP referred her to a Rheumatologist.
Within 3 months, Scarlett had gone from her usual activities to being a barely mobile patient in the rheumatology department.
Scarlett also has hypermobility, so when her new rheumatologist examined her, she showed no signs of inflexibility or stiffness. Touching her toes? No problem. She was even able to do the splits regularly. This led the rheumatologist to believe that there wasn’t anything wrong with Scarlett.
I didn’t feel comfortable leaving and knowing that they weren’t going to do anything. It felt a bit weird that suddenly and so dramatically, I couldn’t walk. So, I pushed further. The only thing my rheumatologist could think of was that sometimes people experience inflammation in the back, so she said we could do an MRI of your back.
Scarlett’s MRI happened quickly, and the results gave her an answer – she had axial spondyloarthritis. The scan showed erosion of the bone in her sacroiliac joints and one of her hips as well as active sacroiliitis, hip and knee effusions, enthesitis and bone marrow oedema. For most people who are diagnosed with axial SpA, a diagnosis is often the starting point where things start to get better – they start to learn how to manage their condition, they are put on treatment to help with their symptoms and even slow down the progression of the disease.
Unfortunately for Scarlett, she hasn’t had much luck with treatment.
She was initially put on Prednisolone, a corticosteroid, to help get her knee joints under control. Steroids can be helpful as a short-term treatment to reduce inflammation and suppress the immune system. She was also given steroid injections into both of her knees as a more targeted treatment. Unusually, they had no effect on Scarlett. She then started to experience bad pain in her back and her ankles.
She has also tried to lower her inflammation and ease her symptoms with ibuprofen, meloxicam, and celecoxib – all forms of NSAIDs (non-steroidal anti-inflammatory drugs). None of these had any effect. She was even prescribed morphine (an opioid painkiller) for a short time to provide some pain relief – that also had no effect on Scarlett. While she was trying to find some relief with these medications, her rheumatologist started her on a biologic – an anti TNF.
While waiting to start that first biologic, Scarlett’s axial SpA started impacting most of her joints. “It was very mentally hard at this point. I was struggling to just cook dinner.” After several months, it became clear that the first biologic was not working for Scarlett. They also discovered that she had developed neutropenia (a low white blood cell count). So, her rheumatologist suggested they try one of the newer medications for axial Spa as her disease was so severe and widespread – a JAK inhibitor.
Frustratingly the JAK didn’t work for Scarlett either and left her with extremely elevated liver enzymes. She had to stop taking it immediately. Then came the third biologic – this time they tried an IL-17 inhibitor. Scarlett was on the third biologic for eight months, but she still felt absolutely no improvement in her condition. She is now on her fourth biologic medication – another anti TNF – which she started a couple of months ago through regular infusion treatment.
She’s also tried to find relief through self-management, including the use of heat, ice, hydrotherapy, TENS machines, acupuncture, massage therapy, and physiotherapy. But any form of movement therapy makes her joints inflamed and swollen. In fact, her knees and elbow are consistently swollen.
I can’t drive anymore; it’s sort of like everything has gone. I think that’s the thing when it’s so widespread. I can’t go on walks because of my legs, and I can’t do other things because of my arms. My mum has to prep all my food. I really struggle with stairs. I’ve tried to move myself downstairs as much as possible, but we have the bathroom upstairs, the shower upstairs. I really struggle with cleaning and showering, so I need help to do that.
As you can see, Scarlett’s axial SpA is particularly difficult to manage. She has tried traditional pain relief, multiple anti-inflammatories, steroids, and all three types of biologic medication. And yet she has not experienced any positive impact on her disease.
We don’t know a lot about the current support and strategies for people like Scarlett. That’s why we are hoping to launch a new project next year to support patients whose axial SpA is difficult to manage. Alongside the British Society for Spondyloarthritis (BRITSpA) and British Society of Rheumatology, we are aiming to work with health professionals, rheumatology departments and people with lived experience to find out how these patients are being managed. We will use this to develop a process to better support people with difficult to manage axial SpA.
But we can’t do this without your support.
We need to raise £50,000 to make this project happen so that we can help people like Scarlett. If you are able, please consider donating to NASS today. Whether it’s a one-off donation or becoming a regular giver, anything you can give will make a difference.