This has been an incredible year for our patient support group. We have been warmly received by all the stake holders that deal with AxSpA patients.

We continue to support and provide education to our patients. The emotional burden of patients are bigger than what was anticipated. Our social media platforms provide a safe and secure place for our patients to openly talk about their disease.

Medical Aid News:
We have now been sucessful in assisting patients winning battles with medical aids. Because AxSpA is not yet a PMB, the road to the correct medication could be a long and frustrating one. We have now come to understand the process, and we can assist specialist with their patients.

We continue to see a steady incline in membership, and our total number of members have grown more that 100% in one year. This goes to show that patient supoort is vital for AxSpA patients.

As our Association does not require any membership fees from our patients, we lean heavily on funding from pharmaceutical companies and corporates. We have managed to secure funding to host webinars, which will provide a platform to chat to our members directly. We have also requested funding to assist with resources for our members, website hosting and distributing of flyers to all rheumatologists.

PMB Application Update:
There has been a delay in our submission of our application, due to the Level 3 lockdown, which placed tremendous strain on our key roleplayers in the finalisation of this project. We will receive the Guidelines for Treatment of AxSpA from SARAA in March 2022, and then our application will be ready for submission. We hope to have this finalised in June 2022.

Our association continues to reach our to rheumatologists and general practitioners, with a continued effort to educate and advocate. With AxSpA getting almost no airtime in this country and the focus being mainly on RA and Lupus, we continue to advocate.

We have launched our first pilot presentation, aimed at GP's, where we educated and gave vital information about the diagnosis for AxSpA. This will be rolled out nationally in 2022.

We have also met with South African Optomotrist Association, and we look forward collaborating with them in 2022.

IMAS South Africa:

IMAS was launched in South Africa, we have already had 90% of our members participate in this vital survey. The survey will close mid December.

We would like to thank each one of you, that was involved in one way or another, assisting our patient support group, and referring your patients to us.

We would like to wish you all a lovely festive season.

Warm wishes

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9 Things You did not Know about AxSpA

1. Undiagnosed depression is common in axSpA.

Knowing that mental health conditions like depression are common in people with axial spondyloarthritis, researchers in Ireland screened 71 axSpA patients for depression during routine rheumatology visits, then looked at whether the results were connected to patients’ reports of disease activity and quality of life measures. They only included patients who did not already have a known diagnosis of depression.
They found that up to 24 percent of people had survey scores that were indicative of underlying depression. These patients also had worse disease activity and quality of life than those with normal scores on the depression surveys.
The researchers suggest that rheumatology providers should actively screen for depression in axSpA patients. One of the screening tools in the study is called the Hospital Depression and Anxiety Scale. If you’re concerned about whether you may have undiagnosed depression or anxiety, consider reviewing the questions with your provider so you can get help.

2. How many non-radiographic axSpA patients progress to ankylosing spondylitis?

We know now that within the axial spondyloarthritis family of diseases, there are two main kinds: non-radiographic and radiographic (known as ankylosing spondylitis). Both diseases are thought to cause similar symptoms and disease burden; the difference being that with nr-axSpA, there is no visible joint damage on X-rays — yet.
Of course, it’s better to not progress to radiographic axSpA, and experts are currently studying how to prevent this disease progression. The first step, though, is understanding how common progression is and what the timeline looks like. When Dutch researchers followed a group of 79 nr-axSpA patients over six years, they found that every two years approximately 10 percent progressed from nr-axSpA to AS.
The researchers plan to continue to study patient and disease characteristics to learn more about who may be more likely to progress; these patients might benefit from more aggressive treatment, such as starting biologics earlier.

3. There’s a notable lack of axSpA awareness among primary care providers

Diagnostic delays of 10 or more years are common in axial spondyloarthritis.

A substantial factor is that people often go undiagnosed or misdiagnosed because other health professionals don’t suspect that their back pain and other symptoms could be due to axial spondyloarthritis, and they don’t get referred to a rheumatologist.
Researchers from Yale University and the University of Connecticut surveyed 138 primary care providers about axial spondyloarthritis (three-quarters were doctors; one-quarter were advanced practitioners, such as nurse practitioners.) Among the findings:
96% were at least familiar with the term inflammatory back pain, but 58% never or rarely assess it.
83% rarely or never order a test for HLA-B27, a genetic marker associated with axSpA
65% rarely or never order a test for C-reactive protein (CRP) in young patients with chronic back pain
At least 75% never asked about uveitis or enthesitis, which are associated with axSpA
50% never or rarely ask about family history of spondyloarthritis
These findings indicate that there is a lot of room for improvement in educating primary care providers about axSpA symptoms and ordering tests to help diagnose it. It also shows how much people with inflammatory back pain and other axSpA symptoms need to advocate for themselves as they navigate the journey to getting diagnosed.
One way to push for better care is to ask your provider: “Are you sure my symptoms couldn’t be due to inflammatory back pain or axial spondyloarthritis?” or “Are you sure there aren’t any blood tests or imaging tests that can help figure this out?”

4. Many axSpA patients in remission may successfully taper biologics without experiencing flares

Of course, getting to remission — when you have low disease activity according to both patient and physician assessments — in the first place is not an easy feat with axSpa. But among those who do, can they safely stop taking biologic medication?
A study from Denmark sheds some insight on this very important question. Researchers identified a group of about 100 axSpA patients in remission for at least a year who were taking TNF biologics and had them gradually taper their medication over the course of a year, then followed the patients for two years. They found that about half had successfully tapered completely. Among the other half, patients were able to stay in remission on various lower doses even though they didn’t stop medication completely.
When researchers looked at which characteristics were associated with successful tapering, they found one strong predictor: physician global score. In other words, patients whose doctors assessed their disease activity to be low were able to successfully taper their medications.

5. Unemployment and challenges with working are very common in axSpA

People with axSpA may have debilitating back pain from a young age, which can affect them during their prime working years. New research at ACR explores and, importantly, helps quantify these issues.
In a study from Ireland, researchers looked at a national registry of people with AS. Among the 876 people for whom information was available about their employment status, about 22 percent were unemployed, which was much higher than the national average of 6 to 13 percent over the same time period. Another 24 percent of people said their axSpA limited their work ability.
What’s more, the use of advanced therapies was high among people who were unemployed — 75 percent reported taking biologics. Researchers called attention to one particular predictor of unemployment: reduced spinal mobility, noting that identifying this early and getting occupational or physical therapy supports might help keep patients working.
In separate research from an online survey of more than 1,800 axSpA patients spanning 13 different European countries, about three-quarters said that they had difficulty or thought they would have difficulty finding a job because of their axSpA. Though many different factors played a role, some worth paying attention to include challenges taking public transportation, needing customized shoes, not having university education, and having had to previously change jobs because of axSpA-related barriers.
If you’re struggling to work because of axSpA, research like this is important to be aware of if you’re trying to get workplace accommodations. It quantifies and validates the very real challenges this disease presents.

6. Artificial intelligence is coming to axSpA — and it may help standardize and speed up diagnosis

Diagnosing axSpA can be tricky for many reasons. Not least of which is that interpreting X-rays of the sacroiliac joint (the joint that connects the spine and the pelvis, where inflammation and damage in axSpA frequently starts) can vary widely depending on who is looking at the films and how much experience they have identifying sacroiliac joint damage.
One study out of Germany that got a lot of attention at ACR this year found that using what researchers called an “artificial neural network” — a form of machine learning — to read the X-rays of people with suspected axSpA could accurately diagnose the condition with good sensitivity (79 percent) and very good specificity (94 percent) compared to consensus judgement from a rheumatologist and radiologist reading the same X-rays. (High specificity means the artificial intelligence was particularly good at ruling out false positives, or diagnosing people with something when they don’t actually have it.)
In the future, doctors may be able to rely on this technology to streamline the process of diagnosing axSpA with X-rays, which is less expensive than using MRIs. It could also provide diagnostic expertise to places that wouldn’t otherwise have it, such underserved or rural areas.

7. Evaluating Crohn’s disease patients for inflammatory back pain can identify axSpA earlier

Axial spondyloarthritis and inflammatory bowel disease, such as Crohn’s disease, often strike together, so it makes sense to keep an eye out for the other when you’re diagnosed with one.
University of Chicago researchers wanted to see if they could identify signs of inflammatory changes associated with axSpA when patients were getting imaging (MRE) of their small intestine. Of 48 patients studied, 25 percent had abnormal sacroiliac joint inflammation detected on imaging. Most of these people were female, had intestinal damage from Crohn’s disease, and did not report symptoms of back pain.
The researchers suggest that MRE scans should be routinely evaluated for musculoskeletal abnormalities, which may be a unique way to identify asymptomatic or early-stage axSpA in people with Crohn’s disease while they are getting gastroenterology care.

8. A high proportion of ankylosing spondylitis and psoriatic arthritis patients use opioids as part of treatment

While opioids may have a place in pain management for certain rheumatic patients and certain circumstances, they don’t address the underlying causes of pain the way other treatments do. In conditions like axial spondyloarthritis and psoriatic arthritis, for example, NSAIDs can address inflammation and biologics may help prevent disease progression.
Researchers, led by Alexis Ogdie, MD, from the University of Pennsylvania, looked at a patient database to better understand the prevalence of opioid use and connection to disease burden. They found that about 21 percent of psoriatic arthritis patients (out of 828 total) and about 27 percent of ankylosing spondylitis patients (out of 334 total) received opioids. Patients were also using other treatments, such as NSAIDs, DMARDs, and biologics, so the opioids were likely in addition to, not instead of.
Increased opioid use was associated with higher disability and disease activity scores, which makes sense — people who are feeling worse and have more pain would be more in need of pain relief options.
The study reveals that many patients still experience chronic pain despite getting treatment for inflammation, which highlights the need for better pain management in these conditions.

9. Having more comorbidities with AS may affect disease burden as well as staying on treatment

Chronic diseases like axial spondyloarthritis don’t exist in a vacuum. Many people have additional medical conditions — known as comorbidities — that can affect their ability to manage their rheumatic condition for a variety of reasons. Spanish researchers shed more light on this issue by analyzing data on a group of 749 people with AS and following them over two years.
They found that people with more comorbidities had worse scores on self-assessments of pain and disease activity. What’s more, people with more comorbidities had a higher likelihood of stopping treatment (TNF biologics) for AS than those with fewer comorbidities.
The study didn’t get into details about which comorbidities might be more associated with treatment discontinuation or worse outcomes. However, research like this highlights the fact that it’s necessary to consider the whole patient when treating a chronic condition like AS. And the more rheumatologists and patients know about how and which comorbidities can affect care and outcomes, the more effectively they can manage someone’s AS.

It also speaks to the importance of making sure that you see a primary care provider and other specialists as necessary to identify and manage comorbidities, since it’s often not possible for the rheumatologist to do so.


AxSpA News Articles

World-class teaching unit focuses on spondyloarthritis (SpA)
Posted on 16 Nov 2021

The Institute of Orthopaedics and Rheumatology places strong emphasis on academic research and teaching.

The Institute of Orthopaedics and Rheumatology (IOR) at Mediclinic Winelands Orthopaedic Hospital, is dedicated to the management and rehabilitation of non-emergency musculoskeletal conditions. As specialist physician Dr Gareth Tarr explains, this world-class unit is always striving to improve its innovation and capabilities in the areas of musculoskeletal and rheumatological care.
“The rheumatology part of IOR offers a dedicated rheumatology practice and rheumatology clinical trial unit,” he says. “We focus on all rheumatological conditions, specifically autoimmune conditions. Our clinical research centre places us at the forefront of medicine development.”

In December this year, IOR will host a preceptorship programme for 15 rheumatology fellows and registrars from Groote Schuur and Tygerberg hospitals. This will consist of interactive lectures, workshops, and visits to the clinic and research units.

The objective of the programme is to improve clinical outcomes for those with, and at risk of developing, ankylosing spondylitis (AS), psoriatic arthritis (PsA) and other types of spondyloarthritis (SpA), Dr Tarr explains. “We aim to do this by training rheumatologists confronted with these uncommon, but complex pathophysiological conditions. The course encompasses SpA diagnostic and management techniques, including treatment options to implement in daily clinical practice.”

Biologics are molecularly engineered drugs designed to control immune conditions in a very specific way. “They’re highly effective but very expensive, and although 30-40% of patients will eventually require them, they need to be on high-paying medical aid plans to be reimbursed for the costs of these medications,” Dr Tarr says.

“When rheumatologists go into private practice, they’re exposed to many more prescription medications – a lot of which they wouldn’t have had access to at a state hospital. Large-scale international congresses often fail to address the challenges of treating SpA patients in many third-world countries. A strong need exists for an Afrocentric approach to the management of SpA, learning from the levels of clinical excellence we have here in South Africa.”

As Dr Tarr adds, the specialists at IOR are passionate about sharing knowledge and teaching. “At IOR, we have specific biologic experience and we want to educate the fellows and junior rheumatologists. We want to give back to the medical community.  “The preceptorship programme will include meeting with a multidisciplinary team of two rheumatologists, an ophthalmologist, radiologist, and spinal surgeon, who work together to fulfil the IOR’s teaching objectives.
Mediclinic Winelands Orthopaedic Hospital, in partnership with IOR, opened in 2019. “Combining rheumatology and orthopaedics made sense as we can optimise both medical treatment as physicians, plus many of our patients needing surgical intervention from the orthopods,” Dr Tarr explains. “All interventions are managed as academically as possible. When working at government hospitals, your time is taken up by seeing patients – and you’re not able to spend as much time doing research. We have a strong emphasis on research, producing academic papers, and teaching.”

Dr Tarr explains the synergy between rheumatologists and orthopaedic specialists: “As we deal with the musculoskeletal system, patients may need orthopaedic input for surgery, after years of arthritis,” he says. “On the other hand, orthopods may have patients with complicated conditions that become purely inflammatory. That’s where rheumatologists step in to control inflammation before it spreads to surrounding joints.” He adds that the IOR set-up works because the continuity of care is quick and it’s easy to get a second opinion. “If I’m dealing with a complicated case, I can walk down the hall, speak to several orthopaedic surgeons and in minutes, a patient can be seen by another specialist. As a unit, we constantly liaise and communicate. We have plans for future preceptorship programmes because we want to continue teaching and sharing knowledge. We hope to break down the traditional bench-to-bedside, bedside-to-bedside and primary care-secondary care silos that have been barriers to a truly integrated, multidisciplinary, patient-centred approach to treating chronic inflammation.”
Dr Tarr is engaged in PhD research on biologic medication in the South African setting, through the University of Stellenbosch.



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