What is Ankylosing Spondylitis?
Ankylosing spondylitis (AS) is a long-term (chronic) rheumatoid condition with pain in the spine in which the spine and sacroiliac joint become painful and inflamed.
In AS, inflammation occurs at the places where ligaments or tendons attach to the bone. This is known as enthesis. Here, the inflammation is followed by some micro wearing away of the bone (known as enthesopathy). Repeated bouts of this inflammatory process and the development of additional bone can cause joint spaces to become narrower and movement to become more restricted over time. With good management the inflammation settles down, but as healing takes place new bone can develop.
What causes Ankylosing Spondylitis?
The cause of AS is currently unknown, however, having a family history has been shown to be a strong indicator for having the condition. Nine out of 10 people with AS test positive for a gene called HLA-B27 and two other genes (IL23R and ARTS1) have also been linked to the condition. It is important to understand that 8% of the general population, including people without AS also have the HLA-B27 gene.
What are the symptoms?
The symptoms of AS can vary between individuals, but usually involve:
- Slow or gradual onset of back, buttock or neck pain and stiffness,
- Above symptoms being felt after rest and eased with movement
- Early-morning stiffness and pain for more than 30 minutes, which wears off or reduces during the day with movement
- Symptoms lasting more than 3 months
- Fatigue or tiredness
If you suspect that you have AS, you should consult with your doctor ASAP to discuss you symptoms, organise relevant tests and guide your management.
How is it diagnosed?
Due to the symptoms of AS being similar to ongoing back and neck pain, you should see your GP if your symptoms are similar to the previously mentioned symptoms. After discussing your symptoms with your doctor, you will likely get blood tests, x-rays or an MRI scan of your lower back and pelvis to investigate your symptoms.
Blood Tests you may get will look at the short and long term inflammatory markers in your body that can indicate whether or not you have an inflammatory process happening in your body.
Creatine Reactive Protein (CRp) is used to assess the presence of inflammation in the body, to determine its severity, and to monitor response to treatment. It can be used to monitor acute or short term levels of inflammation in the body.
Erythrocyte Sedimentation Rate is used to assess the amount of inflammation in the body. It is sometimes seen as a long term indicator of the level of inflammation in the body.
Rheumatoid Factor (RF) is an antibody found in the blood that attacks healthy tissue and leads to joint inflammation. RF is found in approximately 80% of rheumatoid arthritis patients and so its presence may potentially result in the development of rheumatoid arthritis symptoms. Many people contain the rheumatoid factor antibody in their blood but have different autoimmune or inflammatory conditions, therefore having raised RF in a test does not mean you have RA.
X-rays, USS, CT Scans or MRI scans
USS of your hands, feet, shoulders and hips may be performed to look for signs of inflammation or joint irritation such as joint effusion, bursitis or tenosynovitis.
What can I do about it (5 tips)?
Currently there is no cure for AS but good medical management and self management can significant reduce the effect of AS on your life.
Get a clear diagnosis ASAP
The earlier AS is diagnosed the better. Seeing your GP, and Rheumatologist, for relevant investigations and medications can help get your symptoms under control. Having a clear diagnosis will also help you understand your symptoms clearly and help you manage your AS more effectively in the short and long term future.
When diagnosed with a AS it is important to educate yourself on your condition and how best to live with it. By understanding your condition, learning about medications and treatment options, you will be able to make informed decisions about your health and treatment options. Also understanding how your lifestyle influences your condition, and your condition influences your lifestyle, will help you manage AS effectively.
With good information you can plan and discuss with your health team, the most appropriate course of action and management strategy for your symptoms. This will ideally result in the reduction of any pain or difficulties caused by your AS.
The main effect AS has on people is that it stiffens up the spine, sacroilliac joints and the hips, therefor it is important to keep those joints mobile and flexible through a regular movement program. It doesn’t matter if you do this through a home stretching or joint mobility program, yoga, Pilates or a hydrotherapy (movements in a warm swimming pool) regime, the most important thing is that you ACTUALLY get your spine and hips moving, and enjoy doing it.
Having a program that includes moving all parts of your spine and hips in all directions is important as these are the most common areas effected by AS.
There may be times when your symptoms worsen and you have to reduce your activity levels and the intensity at which you exercise. But you should never stop doing some form movement programme. Keeping the joints moving through their range of movement, and maintaining good muscle condition (cardiac and body muscle) is essential for your joints and general health.
The symptoms of AS can come and go, these periods are called ‘flare ups’. Having an effective ‘flare up’ management plan prepared will help reduce the discomfort and impact a flare up can have on your life.
The following factors should be considered in your flare up plan:
- Medical management – GP review for guidance medication if required
- Activity or Pacing management – How will you pace your day to day activities to remain active, remain productive and continue to enjoy life.
- Family Commitments – similar to Activity or Pacing management, how will you manage your family commitments around your symptoms.
- Employment Plan – How will you manage your job, studies or volunteer activities during a flare up?
Discussing your management plans with the relevant people, can help reduce any additional stress or difficulties that can arise if a flare up happens.
If you find it difficult to ‘Be Prepared’ discussing the challenges you face with your family, friends, Doctor, Physiotherapist, Occupational Therapist or counsellor may be beneficial.
One of the most important aspects of living with AS is to remain patient. Getting a diagnosis and finding the most effective management plan for your RA symptoms takes time. It can often take weeks and months before conditions are clarified, treatments started and symptoms are settled. Having patience during the process, and with your body as it adjusts to the condition and any medications you may be prescribed, will make living with AS much easier and less stressful.
Having patience with your doctors as they try to understand and settle your symptom, being patient with any medications while they try to work, and being patient with yourself as you adjust to your diagnosis, will have a more positive and healthy effect on your life with RA. This will make your life with the condition much more manageable.
Adjusting physically, mentally, and socially to having the condition can be a challenge and will take time and effort too. Remaining patient during your journey will have many positive effects on your life with AS.
What can other people do to help me?
The management of AS can vary between individuals, however, early diagnosis and appropriate treatment are essential to relieve symptoms, reduce joint damage and help you continue to lead a normal life.
Initially, the most important thing you can do is discuss your symptoms and diagnosis with your doctor. They may prescribe medications that can help your symptoms immediately, order tests to confirm your diagnosis and refer you to a specialist (Rheumatologist).
Finding the right doctor for you is very important. For the long term outlook, it is important to find a Doctor you feel is approachable and effective in the management of your condition. You may have to call upon them at various times in your life, therefore having a positive relationship with them, and confidence in their management of you is important.
The most common medications your Doctor will manage are
- Pain killers/ analgesics
- Cortico Steroids medications or injections
Specialists/ Consultant Rheumatologists
Once diagnosed with AS your doctor may refer you to a Specialist Rheumatologist to over see your condition. Rheumatologists are specialised doctors who have dedicated their professional lives to managing rheumatology conditions and have years of invaluable clinical experience in diagnosing and managing Rheumatoid conditions. They also have specialised medication prescribing rights and qualifications to help manage your condition.
The main roles of the Rheumatologist is to use their knowledge and clinical skills to diagnose your condition and get your symptoms under control. Due to clinical demand and best patient care, Rheumatologists work closely with, and in conjunction with, your GP to monitor your symptoms, blood tests and condition over time.
Depending on your symptoms, blood tests and medical history, the medications commonly prescribed by specialists in relation to AS are one, or a combination of the following medication groups:
- Pain killers/ analgesics
- Cortico Steroids medications or injections
- DMARDS (Disease modifying anti rheumatic drugs)
- Biologic DMARDS (made from living protiens and may prescribed by Rheumatologists in certain clinical circumstances)
While the thought of taking any of these medication can be both daunting and unpleasant, the medications prescribed by your GP or Specialist will have the most evidence base and research backing their effectiveness.
Rheumatology specialists appointments are often in high demand and can often be shorter than patients expect. However, rest assured your Rheumatologist understands your condition, understands what you are going through and is working hard to find the most effective management strategy for your symptoms. Due to the complex nature of Rheumatoid conditions and the effect they can have on the various systems of the body, finding the right medication and management can take time.
Ideally you will not have to see a Rheumatology specialist very often, as you, your GP and your Rheumatologist are managing your symptoms effectively.
Based on the symptoms and issues you may be experiencing, your Specialist or GP may refer you to a variety of health professionals to help manage your condition. The most common Health professionals used by GPs and Rheumatologists, to help people with AS are:
|Physiotherapists||Help manage pain, rehabilitation from injury, improve movement, improve or maintain function and independence|
|Occupational Therapists||Help to manage day to day tasks and function. Provide equipment to maintain function and independence, wheelchair prescription, splints and supports for upper limbs, pressure area management and pacing strategies|
|Dietitians||Help to manage diet, nutrition, obesity, malnutrition and lifestyle choices related to nutrition|
|Podiatrists||Help manage foot pains, footwear, problems and mobility issues related to the foot|
|Exercise Physiologists||Help manage general fitness, functional strength and conditioning, cardiac health, body conditioning and lifestyle management.|
When choosing which therapist to see it is beneficial to discuss your plan with your GP, research the therapist you intend to see, and ensure the therapist applies some sort of evidence-based practice to the treatments they are providing you.
Remember, there is no cure for AS, so be cautious of anybody making unfounded claims to be able to cure your condition or resolve your symptoms completely.
Many people do try alternative approaches to help their RA and its symptoms, with mixed effect. No matter what approach or therapist you see, it is a good idea to discuss your approach with your GP, Rheumatologist or relevant health professional. More importantly, please ensure you feel better after seeing them and have a clear plan on how your condition will be monitored and self-managed
More importantly, please ensure you feel better after seeing them, have a clear plan on how your progress will be monitored, and the plan for self management.
Family, Friends and Support Networks
The most important members of you AS team are your family, friends or support network. Attending events, remaining active and living life can be a challenge at times for all of us, however, for people with AS, the symptoms can flare up at times and can significantly impact your life. Therefore, having people to talk to and share your highs and lows with is very important in maintaining good physical, mental and spiritual health.
Many organisations and charities offer support, education and self-management courses for people with AS. These can help you connect with other people living with AS, as well as build skills and confidence in managing your health and AS.
Participating in physical activity with others can provide you with an opportunity to keep your joints and body healthy while sharing positive experiences with others. Activities such as walking, hydrotherapy, Tai chi, pilates or mindfulness sessions are all low impact activities that can be enjoyed at all stages of AS.