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20/Apr/2023

DYK for many years it was believed that ancient Egyptian pharaohs Amenhotep (Amenophis) II, Ramses II (“The Great”), and his son Merenptah all had ankylosing spondylitis (AS)? In 2002, scientists examined X-rays of their mummies and found what they believed were radiological signs of AS. Cool story. And, if you have AS, it’s a mic drop moment. 🎤 Boom!

Unfortunately, this has now been debunked 😑 and the mummies show signs of a completely different condition. But let’s not let facts get in the way of a good story 😁. And let’s find out about AS.

Ankylosing spondylitis is an inflammatory arthritis that causes inflammation in the spine and the joints that connect the lower spine to the pelvis (sacroiliac joints). This inflammation causes back pain, stiffness and reduced mobility in the spine.

The good news is there are effective treatments for AS.

What causes it?

Ankylosing spondylitis is an autoimmune disease. That means it occurs as a result of a faulty immune system.

Instead of identifying foreign bodies (e.g. bacteria, viruses) and attacking them to keep you healthy, your immune system mistakenly targets healthy tissue in and around your joints, causing inflammation and pain.

We don’t know why this happens. Genes are thought to play a role. You’re more likely to get AS if your family has a history of it. Most people with AS have the gene called HLA-B27; however, this gene can also be found in people who don’t have AS.

Since this gene doesn’t automatically lead to the development of AS, scientists believe a complex mix of genes and environmental factors may be involved.

We used to think AS affected more men than women, but recent research suggests men and women are affected relatively equally. AS tends to develop in late teens and early adulthood.

Symptoms

The symptoms vary from person to person. The most common are:

  • Pain and stiffness in the back, buttocks or neck, often worse after waking or resting and relieved by exercise and movement.
  • Enthesitis, or inflammation and pain where tendons or ligaments connect to bone. Common areas for enthesitis are in the front of the chest where the ribs join the breast bone, the back of the heel (Achilles tendon) or underneath the foot.
  • Fatigue or extreme tiredness that doesn’t get better after sleep or rest.

Other symptoms can include:

In AS, due to chronic inflammation, new bone may grow around the joints in the spine. This can lead to permanent stiffness in the back and neck of some people with AS. In severe cases, the bones of the spine can fuse together; however, this can usually be prevented by starting appropriate treatment as early as possible.

Symptoms may change from day to day. At times your symptoms (e.g. pain, fatigue, inflammation) can become more intense. This is a flare. Flares can be unpredictable and seem to come out of nowhere.

Diagnosis

If you have ongoing back pain and stiffness or other symptoms of AS, it’s essential that you see your GP. Getting a diagnosis as soon as possible ensures treatment starts quickly. This will give you the best possible outcomes.

No single test can diagnose AS, so your doctor will use a combination of tests. They may include:

  • Your medical history. Your doctor will ask about your symptoms, family history and other health issues.
  • A physical examination to assess joint tenderness, flexibility, and stiffness.
  • Genetic testing to look for the HLA-B27 gene.
  • Blood tests to check for inflammation.
  • Scans such as an X-ray and MRI (magnetic resonance imaging) to look for joint inflammation and damage.

Your GP will refer you to a rheumatologist if they think you have AS. Rheumatologists are doctors who specialise in diagnosing and treating problems with joints, muscles, bones and the immune system.

Treatment

Ankylosing spondylitis is treated using a range of different treatments, including medicines, regular exercise and self-care.

Medicines

The two main types of medicines used to treat AS and help manage its symptoms are NSAIDs and targeted therapies:

Non-steroidal anti-inflammatory drugs (NSAIDs) are nearly always used as the first medicine to treat the pain, inflammation and stiffness of AS unless there’s a reason you can’t take them. Research shows that NSAIDs are very effective in managing symptoms of AS. Some people may need to take them regularly, while others will only take them as needed. This will depend on your symptoms and how you respond to the NSAID.

Your rheumatologist will discuss how often you should take NSAIDs and their long-term benefits and risks. There are many different types and brands; some are over-the-counter, while others are only available on prescription.

Targeted therapies are medicines that ‘target’ specific proteins in the immune system that produce inflammation. They include biological disease-modifying anti-rheumatic drugs (biologics), biosimilars and targeted synthetic disease-modifying anti-rheumatic drugs. These targeted treatments have dramatically improved the quality of life for people with AS who need more than NSAIDs to manage their condition.

Your rheumatologist will talk with you about using these medicines if you need more than NSAIDs to manage your condition or if you can’t take NSAIDs.

Exercise

This is the most important thing you can do to help manage your AS. Exercise can improve symptoms, including stiffness, pain, fatigue, breathing capacity and posture. It helps increase your flexibility and range of movement, so it’s easier to do many everyday tasks.

As soon as possible after receiving your diagnosis, you should ideally begin a personalised exercise program developed by a physio or exercise physiologist (EP) and aim to do some exercise every day. Being active is also essential for your overall health and wellbeing. It helps keep your muscles, bones and joints strong so that you can keep moving. It reduces your risk of developing other conditions such as heart disease, osteoporosis, diabetes and some forms of cancer. It boosts your mood, benefits your mental health, helps with weight control and improves sleep.

Self-care

As well as taking your medicines as prescribed and exercising regularly, there are other things you can do.

Learn about your condition. Understanding AS allows you to make informed decisions about your healthcare and actively manage it.

Manage your weight. Being overweight or obese increases inflammation throughout your body. This inflammation affects not only your joints but also blood vessels and insulin levels. This can increase your risk of chronic health conditions such as heart disease and diabetes. Losing weight is an important thing you can do to reduce your risk of these conditions and reduce your AS symptoms. Being overweight or obese also limits the effectiveness of some medicines used to treat AS. Losing weight can be challenging, so if you need to lose weight or advice on healthy eating, talk with your doctor or dietitian.

Learn ways to manage your pain. Pain is the most common symptom of AS, so it’s crucial to learn ways to manage it effectively. Read our A-Z guide for managing pain for more information.

Work closely with your healthcare team. The best way to live well with AS is by working closely with the people in your healthcare team (e.g. GP, rheumatologist, physio). Keep them informed about how you’re doing and if you’ve experienced any changes in your symptoms or tried new medicines, complementary therapies, supplements or other treatments.

Use aids and equipment. Supports such as long-handled shoehorns, reachers and canes can reduce joint strain and make life easier, especially if your condition has reduced your flexibility and mobility. An occupational therapist can advise you on aids, equipment and home modifications.

Sleep well. Not getting enough quality sleep can worsen your symptoms; however, getting a good night’s sleep when you have chronic pain can be difficult. If you’re having problems sleeping, talk with your doctor about how to deal with this.

Manage stress. Stress can also aggravate your symptoms, so learning to deal with stress is extremely helpful. Things you can do to manage stress include planning your day and setting priorities, using relaxation techniques such as going for a walk, getting a massage or listening to music, and, where possible, avoiding people and situations that cause you stress.

Practise mindfulness. Regularly practising mindfulness meditation can improve your mood, relieve stress, improve sleep, improve mental health and reduce pain.

Eat a healthy, balanced diet. While there’s no specific diet for AS, it’s important to have a healthy, balanced diet to maintain general health and prevent weight gain and other health problems, such as diabetes and heart disease.

Quit smoking. Smoking cigarettes harms your general health, negatively affects your bone health, and increases inflammation.

Seek support from others. You might find it helpful to contact the Ankylosing Spondylitis Australia or the Ankylosing Spondylitis Group of Victoria and speak to others who have AS and know what you’re going through.

Complications

Some people with AS develop an eye problem called iritis or uveitis, which causes a painful red eye with blurred vision and sensitivity to light.

If you develop eye symptoms, you’ll need to quickly get your eye checked and treated by an ophthalmologist. Treatment is usually with prescription eye drops, which reduce the chance of permanent eye damage.

Understanding this risk and knowing what signs to be alert for can reduce the risk of eye damage. Ask your GP or rheumatologist what you should do if you develop any eye symptoms.

One last thing

If you think ankylosing spondylitis sounds like a dinosaur, you’re not far wrong. There was a dinosaur called an ankylosaurus. So, what you’ve lost in ancient pharaohs, you’ve gained with a very impressive dinosaur 🐉 😉.

Contact our free national Help Line

Call our nurses if you have questions about managing your painmusculoskeletal condition, treatment options, mental health issuestelehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

More to explore


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25/Jan/2023

In October 2022, the Albanese Government announced that they would invest almost $7 million in stem cell research. The ARISTOCRAT project, led by MSKs Director Emeritus, and orthopaedic surgeon Professor Peter Choong, will allow researchers to develop new therapies to improve the lives of people with conditions like osteoarthritis.

So what does this mean? What are stem cells? And, will they be the miracle treatment we’ve been waiting for?

Let’s take a look.

But first, what’s osteoarthritis?

Osteoarthritis, or OA, is the most common form of arthritis. It most frequently affects the joints in the knees, hips, feet, spine and hands.

OA was once thought to be a natural part of ageing or a lifetime of ‘wear and tear’ on joints. But we now know it’s much more complex than that and may occur due to many factors.

With OA, the cartilage that lines the ends of bones in a joint, enabling them to move smoothly over each other, becomes brittle and breaks down. Because the cartilage no longer has a smooth surface, the joint becomes stiff and painful. Eventually, the cartilage can break down so much that it no longer cushions the two bones.

There are currently no treatments, including medicines, that can affect the underlying disease process of OA. Instead, symptoms (e.g. pain and stiffness) are managed using exercise, weight management and medicines that provide temporary relief.

The lack of targeted treatments to prevent OA from worsening or reversing the damage it causes makes the promise of new and innovative treatments, such as stem cells, very exciting.

So what are stem cells?

Cells are the basic building blocks of all living things. They provide structure for the body, take in nutrients from food, convert those nutrients into energy, and carry out specialised functions. Cells also contain the body’s hereditary material and can make copies of themselves. We have many different types of cells, such as nerve, bone, fat, blood, and stem cells.

Stem cells differ from other cells in the body in three ways:

  1.  they can divide and renew themselves over a long time
  2.  they’re unspecialised, so they can’t do specific functions in the body
  3.  they can become specialised cells, such as muscle cells, blood cells, and brain cells.

There are many types of stem cells. However, the type of stem cell most often promoted as a treatment for osteoarthritis is the mesenchymal stem cell or stromal cell. They’re generally referred to as MSCs (because no one can say mesenchymal 😉). These cells can be obtained from many parts of the body, including bone marrow and fat.

MSCs can become bone cells (osteoblasts), cartilage cells (chondrocytes), muscle cells (myocytes), or fat cells (adipocytes). They can also release substances that may alter how the immune system responds to injury and encourage other cells to grow.

This has led scientists and doctors to explore whether MSCs can restore function to damaged joints and tendons.

EuroStemCell has an interesting article that explains MSCs – what they are, what researchers are investigating when it comes to MSCs, and the challenges they face.

More research is needed

For most conditions, stem cell treatments are still considered experimental. They have yet to prove safe or effective in clinical trials for osteoarthritis.

While there’s a lot of excitement about the future, we need more research to understand how to best obtain, handle and administer stem cells or the cells made from them.

We need to know some of these answers to ensure that new stem cell treatments don’t cause more harm than good.

We also need more information about potential side effects and the long-term safety of stem cell treatments.

Be wary

Unfortunately, despite the lack of reliable evidence that stem cell treatments work and are safe to use, they’re actively promoted for osteoarthritis and many other health conditions by clinics in Australia and overseas.

Some clinics use cells obtained from the person on the same day they’re collected, while others may grow the person’s or donor cells in the lab over several weeks before returning them to the person. It’s important to know that even when the cells are taken from a person and returned to the same person, there’s still risk involved. Even though they’re your own cells, the fact that they’ve been removed means there’s the risk that they may have become contaminated.

Most clinics charge substantial fees (thousands of dollars). They encourage multiple treatments and may imply they’re doing research but aren’t usually part of a registered clinical trial. They also often use celebrity patients’ testimonials or endorsements to support their claims of success.

That’s why participating in a clinical trial is currently the safest way to access stem cell treatments. Researchers must follow strict rules to ensure that participants are safe. Each clinical trial also follows a careful study plan or protocol that describes what the researchers will do.

Before joining a clinical trial, you’ll be told what to expect as a participant and all the things that might happen. For example, someone from the research team will explain possible side effects or other risks of the treatment. You’ll also have a chance to ask questions about the trial. In most cases, you won’t be required to pay any costs involved in participating in a clinical trial. There may be out-of-pocket expenses, such as travel, which may be reimbursed to you.

Ask questions

If you’re considering trying a stem cell treatment, you need to be well-informed – so ask lots of questions. For example:

  • Is this treatment part of a registered clinical trial listed on the Australian New Zealand Clinical Trial Registry (ANZCTR), ClinicalTrials.gov, or elsewhere?
  • Was ethics review and approval obtained, and by whom?
    Note – All clinical research projects in Australia must be approved by a Human Research Ethics Committee (HREC), which checks that the research conforms to the National Statement on Ethical Conduct in Human Research requirements.
  • Does the doctor, or any of the researchers involved, have any conflicts of interest, including financial?
  • What are the total costs of the treatment, and how much will I be expected to pay? Remember, if you’re taking part in a clinical trial, no costs should be involved.
  • Will you use my own cells, or are they from a donor or other source?
  • How does this treatment compare to other treatments?
  • Is there any scientific evidence (not testimonials or anecdotes) that the treatment improves my health condition?
  • What are the potential side effects or risks involved?
  • How many treatments are required?
  • How long do you monitor the effects of my treatment?

Stem cell treatments are still considered experimental for osteoarthritis, so don’t be embarrassed to ask lots of questions. Learn as much as possible about the treatment and how it might affect you. You should also have a chat with doctor or specialist about your intentions and get their input.

Stem cells and cell therapy are an exciting new frontier in medicine, but it’s still early days. So watch this space.

And watch our video, Stem cells and muscle, bone and joint health: Hope, hype and reality, presented by Professor Megan Munsie, Deputy Director – Centre for Stem Cell Systems, The University of Melbourne; Head – Education, Ethics, Law & Community Awareness Unit, Stem Cells Australia.

Contact our free national Help Line

Call our nurses if you have questions about managing your painmusculoskeletal condition, treatment options, mental health issuestelehealth, or accessing services. They’re available weekdays between 9am-5pm on 1800 263 265; email (helpline@msk.org.au) or via Messenger.

More to explore

Peak bodies
Research registries

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14/Aug/2018

There’s so much information available on treatment options for arthritis and musculoskeletal conditions. Some information will support the use of particular treatments, while other information will tell you the treatment doesn’t work. And most of the information sounds legitimate and persuasive.

So how do you know what to do or who to believe?

One thing you can do is search the Cochrane Library for reliable and evidence-based information.

The Cochrane Library is a collection of medical and health databases provided by the Cochrane Collaboration, an international, independent organisation. It was established to make sure that everyone has access to current, accurate information about the effectiveness of healthcare treatments.

Through the Cochrane Library you can access Cochrane Reviews.

Cochrane Reviews tell you how effective healthcare interventions are in improving your health or helping you with a particular health problem. These interventions include things such as medications, vaccinations, exercises and treatments such as physiotherapy.

Cochrane Reviews are updated regularly, with the most up-to-date and reliable evidence.

Each review starts with a query, for example:

  • Do painkillers rubbed on the skin really work??
  • Does transcutaneous electrical nerve stimulation (TENS) relieve pain in adults with fibromyalgia?
  • What non‐drug interventions may help people with inflammatory arthritis stay at work?

Reviewers then collect, evaluate and summarise the available evidence on this topic.

Plain language information at your fingertips

Reviews can be many pages long, and quite complex. To help you access this information, each review has a plain language summary. You can usually find this at the top of the page, after the abstract.

Access the Cochrane Library today.

Want to get involved?

If this sort of thing really floats your boat, check out the Cochrane Consumer Network. There are many ways that consumers can get involved.


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