Living with Axial Spondyloarthritis (axSpA) by Arthritis Ireland

Living with Axial Spondyloarthritis (axSpA)

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Contents Introducing axial spondyloarthritis (axSpA)

About axSpA Disease progression What causes axSpA? Risk factors

Symptoms

Diagnosis

Delays in getting diagnosed Tests that may be carried out Helping with your own diagnosis Newly diagnosed Treating axSpA

Health professionals Pharmacological treatments Non-pharmacological treatments Surgery Managing axSpA

Self-management Physical activity Healthy eating Good sleep habits Managing stress and difficult emotions Smoking Managing fatigue Managing flare-ups Managing work Managing finances Accessing the health service

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Published November 2023 2

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Arthritis Ireland: Building a better world for people living with arthritis today and a world without arthritis tomorrow Arthritis affects so many people in countless ways and at all stages of life. The experience of pain, stiffness and fatigue are all too real – as is the disruption it causes to lives. At Arthritis Ireland, we understand what it’s like to live with this chronic condition. Everything we do is with a view to supporting people living with arthritis. That includes investing in research as well as advocating on your behalf with policymakers and politicians. This publication is just one aspect of our work. We understand how important it is to be able to access trustworthy information about your health from a reliable source. That is why we work with healthcare professionals and other experts in producing these materials. There are lots of other supports available to you, including our; ● Award-winning self-management programme, ‘Living

Well with Arthritis’. ● Helpline for practical information and emotional

support (LoCall 0818 252 846). ● Website and online communication channels. ● Regular information events, podcasts and webinars. ● Volunteer-led local activities around the country.

If arthritis is affecting your life or the life of someone you love, please call or connect with us online (contact details on the back of this booklet). www.arthritisireland.ie

Introducing axSpA This booklet explains the condition and symptoms, as well as the diagnosis, treatment and management of axial spondyloarthritis (referred to as ‘axSpA’ throughout this booklet, but also sometimes known as ‘axial SpA’). Although there is no cure for this type of arthritis, there is a lot of hope for someone recently diagnosed. There have been strides forward in pain management and treatment that can halt or delay the progression of the condition, helping to prevent long-term complications. In this booklet, you will discover useful information on treatment options and self-management techniques that can help improve your quality of life. These include exercises and tips for better posture (since the condition mostly affects the back), as well as advice on healthy eating, physical activity, and sleep. There is also information on how to deal with fatigue associated with the condition, what to do during a flare-up and how to manage your work and finances.

axSpA is a lifelong inflammatory disease, mostly affecting the spine and back.

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About axSpA AxSpA is a form of inflammatory arthritis characterised by active inflammation of the spine and sacroiliac (SI) joints, which are the joints that connect the lower spine and pelvis. The main symptom is inflammatory back pain, but some people also experience pain, stiffness and limited mobility outside of the spine, such as in their neck, shoulders, hips, chest, knees and even heels. AxSpA is an umbrella term that includes two main types: non-radiographic axSpA and radiographic axSpA (which is frequently referred to as ankylosing spondylitis). Throughout this booklet, we will use the umbrella term, axSpA, which includes both sub-types, particularly since recent research suggests that it is no longer important to differentiate between them in terms of treatment and care. Non-radiographic axSpA (or nr-axSpA): Where there are symptoms of axSpA and inflammation visible on Magnetic Resonance Imaging (MRI), but X-ray changes are not present. This sub-type occurs when the disease has not yet progressed to ankylosing spondylitis, or radiographic axSpA.

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The incidence of axSpA in Ireland is low. It is estimated that just 0.5 per cent of the population is affected by the condition.

Radiographic axSpA (ankylosing spondylitis): With this form of axSpA, definite changes to the sacroiliac joints, or the spine, are seen on an X-ray. In response to inflammation, the body produces extra calcium around the bones of the spine which, in turn, can mean extra bits of bone grow, causing your back and neck to become very stiff. In rare cases some of the bones of the spine may link up, or fuse together, due to the extra calcium. These types can be viewed as two ends of the same disease spectrum, with one showing definitive changes to the SI joint (or spine), and the other showing less (or no) damage to those areas most affected within the body. Some cases of nr-axSpA can progress or get worse over time, eventually showing up on an X-ray or MRI. However, in many cases, the disease never reaches the point of being visible on imaging tests.

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Disease progression The first stage of axSpA is when inflammation takes place at the site where ligaments or tendons attach to bone (in nr-axSpA). The second stage involves some wearing away of the bone, which occurs at the site. Next, when healing takes place, new bone can develop, sometimes replacing ligaments or tendons (making movement more restricted). At the latest stage, further bone formation can occur and the individual bones that make up the backbone can fuse together. Some people will only experience the very first stage of axSpA and it may not progress any further. In fact, recent research suggests that only about half of people diagnosed with nr-axSpA will go on to develop ankylosing spondylitis. In some cases, symptoms resolve on their own and patients can go into remission. Or, even after a period of experiencing many symptoms, the disease can become much less active, or may even cease completely. In others, the disease continues to be active, causing pain and stiffness. Please read on to find out more about the things you can do to help treat and manage axSpA.

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What causes axSpA? The exact cause of axSpA is not known. Research suggests that a particular combination of genes may make some people more likely to get axSpA than others. We do know that many people with axSpA also have a gene, called HLA-B27, although many people who have the gene don’t develop axSpA. Also, environmental factors, such as viral infections, can trigger the condition, although more research is needed to find out how exactly this happens.

Joints and body areas affected by axSpA skin eyes back (main area affected)

chest

small joints of hands

buttocks

heels

shoulders (between ribs and breastbone)

small joints of toes

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Risk factors The below are a range of factors that could put you at risk of developing axSpA; Gender: axSpA was traditionally believed to primarily affect males, but recent research suggests that women have a different axSpA disease course than men. The kind of damage that can be seen on X-rays is more likely to occur in men than in women. This may lead to women being diagnosed less often. Age: axSpA typically shows up in late adolescence and early adulthood (20s). Genetics: having the gene HLA-B27 will put you at a significantly higher risk of this condition. However, having this gene (or a family history) does not make it inevitable that you will go on to develop axSpA. In fact, there are many other genes also involved in the process. Environmental factors: smoking, certain infections (such as viral infections), and changes in the bacteria in your colon, and bowel inflammation, can all contribute to a higher risk. More research is needed to understand these factors further.

axSpA is a systemic disease, meaning that it can affect the entire body, rather than just a single area or body part. Other areas, such as the eyes, bowel and skin can also be affected.

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Symptoms Although symptoms will vary from person to person, the main symptoms of axSpA tend to be the following; ● Gradual onset of pain and stiffness in the lower back

and buttocks, typically worsening over time (weeks or months, rather than days) and persisting for three months or more. ● Morning stiffness and pain, typically wearing off during

the day, particularly with activity and movement. ● Back pain that disturbs sleep and which is relieved by

moving/getting out of bed. ● Weight loss and/or loss of appetite. ● Digestive problems, such as diarrhoea or cramping

pains that can be severe (often before passing a bowel motion). ● Mild fever and/or night sweats. ● Fatigue. ● Pain and/or swelling in the shoulders, hips, knees,

ankles, heels, chest/ribs and small joints of the hands and feet. ● In rare cases, the heart and lungs will be affected,

leading to chest pain and shortness of breath. ● Dactylitis - a condition where the fingers and toes

swell to a point where they resemble sausages. ● Psoriasis - a skin condition that causes flaky patches

of skin which form scales. ● Uveitis - an eye condition that makes eyes painful,

watery, red and sensitive to bright light. ● Anaemia - a blood disorder in which the blood has a

reduced ability to carry oxygen due to a lower than normal number of red blood cells, or a reduction in the amount of haemoglobin. 10

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At the beginning, axSpA usually causes low backache and stiffness. You may also feel pain in your buttocks, and possibly down the backs of your thighs. Aches and pains in the neck, shoulders and hips may follow. In a few cases, however (and especially in children), the first symptoms may not show up in the back but, rather, in the hips, knees or legs. It can even manifest as just a swollen knee. Some people experience nothing more than a series of mild aches and pains that come and go over a period of months, never really troubling them greatly. The above symptoms can be present in people who don’t have axSpA, which is why medical assessment is crucial.

Mechanical back pain vs back pain caused by axSpA; Mechanical back pain typically results from changes in the back due to disruption, such as lifting something too heavy or sleeping on a bad mattress. However, inflammatory back pain, caused by axSpA, tends to be persistent, lasts more than three months, and worsens with inactivity.

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Diagnosis When an individual is diagnosed with axSpA, they can find a treatment and lifestyle plan that will help to minimise their symptoms and maintain their function throughout life, meaning that they can help to lead meaningful and active lives despite having the condition.

Delays in getting diagnosed Diagnosis is one of the biggest challenges faced by individuals with axSpA, and the health professionals involved in their diagnosis and treatment. Currently, it can take approximately eight years for someone to be diagnosed with axSpA. Reasons for delays Although frustrating, there are valid reasons for these delays, including all or some of the following; ● The fact that many people don’t know what axSpA is,

or suspect it as a cause of their symptoms. We hope that this booklet will contribute to education around the condition.

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● The fact that so many people will experience back

pain at some point of their lives. In many cases, they and others will put it down to biomechanical or disc issues. ● GPs will not typically see many cases of axSpA, so

they may direct someone for physiotherapy, rather than referring onto a rheumatologist initially. ● X-rays may not show up any changes in the spine

or sacroiliac joint so you are dependent on a health professional sending the patient on for further MRI investigations, or else the condition may not be picked up. ● Even if a patient is sent on for MRI, some (with

non-radiographic axSpA) may not even show any inflammation on their MRI, despite having symptoms of the disease. The exact reasons for this are still not fully understood, but it explains why diagnosis can be so problematic. ● Symptoms of axSpA are similar to those of other

types of autoimmune arthritis, such as psoriatic arthritis (PsA) or rheumatoid arthritis (RA), leading to some confusion. ● Even if symptoms

are picked up and someone attends a rheumatologist, it may still take time to get diagnosed since there is no single diagnostic test or specific progression of the disease.

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Tests that may be carried out When you do present to your GP with symptoms, they will tend to perform a standard physical exam and, if they suspect axSpA, they will refer you to a rheumatologist, who will perform the following; ● Physical examination: carried out by the

rheumatologist, or clinical nurse specialist, in order to assess your current level of flexibility and joint tenderness, as well as your ability to expand your chest comfortably. ● X-ray: spinal and pelvic X-rays to determine whether

there have been any changes to your bone and your joints, such as extra bone growth or fusion (however, many people will have shown no changes on X-ray, as discussed above). ● MRI: to investigate whether there is any swelling in

the bone marrow and around the joints. ● Blood tests: to look for the HLA-B27 gene, but also

to detect inflammatory markers, CRP and ESR.

Early diagnosis is key as, once recognised, axSpA can be managed successfully in many cases, allowing the individual to continue with a full and active lifestyle.

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Helping with your own diagnosis You can potentially assist your healthcare team in your diagnosis by clearly communicating your personal and family history. It is essential to mention, for instance, if you have other family members with this or a similar condition. Also, having answers prepared to the following questions would be beneficial, as it will give the team an idea about the type and pattern of your symptoms; ● What symptoms have you been experiencing and for

how long? ● How did your symptoms begin (suddenly, or did they

come on slowly, over time)? ● How is your pain and stiffness in the morning, and

how long does it take to subside? ● What impact are your symptoms having on your daily

life and what things are they preventing you from doing (such as sleeping well, eating well, managing work and chores at home)? ● Do you take, or have you taken any non-steroidal

inflammatory medication (NSAIDS)? If so, how does the pain and stiffness tend to respond to NSAIDS? ● Have you ever suffered from; inflammation of your

eyes (uveitis), inflammation of your fingers and/or toes (dactylitis), inflammatory bowel disease or psoriasis? www.arthritisireland.ie

Newly diagnosed Being diagnosed with arthritis can be a very intimidating and confusing experience, especially if you don’t know where to turn for help. Initial feelings of fear and anger are a completely normal first reaction but, by taking the right steps, a diagnosis of arthritis does not have to alter your quality of life. People with chronic arthritis can live productive, satisfying and independent lives. Some people living with axSpA have become elite athletes and have accomplished incredible physical achievements, including running marathons and competing in elite level sports. The most important step in achieving your best life is to take an active part in managing your own arthritis. See the ‘Self-management’ section, later in this booklet. The internet is a hugely valuable source of information and support when learning about your condition. However, it is important to remember that not all information is reliable. Try to stick to reputable websites such as arthritisireland.ie, mayoclinic.org and hse.ie.

If you are looking for confidential support and information from people who have experienced an arthritis diagnosis first hand, contact the Arthritis Ireland helpline on 0818 252 846.

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Treating axSpA There have been big leaps forward in the treatment of axSpA. Although it can be challenging living with this condition, being actively involved in your own treatment will make a huge difference. Managing pain is a big part of living with axSpA. It is important to communicate with your health professional team with regards to monitoring your treatment (including giving detail on your flare-ups) so that, together, you can find a treatment plan that works best for you.

Health professionals Once you have been diagnosed, prompt action will help you to avoid further damage to your joints so it’s important that you work in partnership with the health professionals that are involved in your treatment. These tend to include the following; General Practitioner Your GP will generally be your first point of contact and will probably be the person who refers you to a consultant rheumatologist. Your GP may also be responsible for your ongoing care and recommend one or more health professionals to contribute to your overall treatment. Rheumatologist Rheumatologists are specialists trained in diagnosing and treating arthritis and rheumatic diseases. They are mostly based in hospital rheumatology units. They will establish your diagnosis and identify a suitable treatment plan for you. You will probably see the rheumatologist regularly to monitor your disease and treatment.

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Rheumatology Nurse You may be referred to see a rheumatology nurse specialist when you get your diagnosis to discuss your new diagnosis and any medication that you have been prescribed. Physiotherapist A physiotherapist is a very important part of your treatment plan. He or she will design a programme that will help improve your muscle strength, and also help you to maintain the mobility in your spine and other joints. He or she may also give you a plan for managing your posture, since this condition can have a major impact on your spine. Occupational Therapist An occupational therapist works with you to improve or maintain your ability to perform activities of daily living. He or she can advise you about equipment to help make life easier at home or in the workplace. Radiographer A radiographer takes X-rays and MRI scans to detect the progression or stage of the disease. Psychotherapist Living with a debilitating condition such as axSpA can understandably affect your mental health. If you’re becoming depressed or having difficulty adjusting to your condition, you may be referred to a psychologist.

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Pharmacist Your pharmacist can provide lots of information on the drugs you’re prescribed. A pharmacist is also aware of the problems some over-the-counter treatments can cause when combined with prescription medication. They can advise you on the right course of action. Dietitian A dietitian can help you to devise a healthy eating programme. Since this condition can affect your intestine, there may be specific advice tailored to those aspects. We also know that carrying extra weight is more likely to exacerbate inflammation, so advice tailored to maintaining a healthy weight is advisable. Surgeon Surgery on your spine is very rarely recommended. However, you may come into contact with a surgeon for a hip or knee replacement at a later stage of your disease progression, as there is an increased risk of more wear and tear on these joints as a result of having axSpA. Ophthalmologist Your rheumatologist may refer you to an ophthalmologist to specifically treat uveitis. This is often treated with eye-drop medication to reduce inflammation in the eyes.

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Communicating with your healthcare team For the best possible outcome, it is important that you develop a strong relationship with your healthcare team, and that you play an active role in the treatment and control of your axSpA. Here are a few things to consider when you meet your healthcare team: ● Appointments: Aim to give as much information as

you can during appointments and try to be as specific as possible when you describe your symptoms. Take notes when you are there. If you don’t understand what your doctor is telling you, ask for a more detailed explanation. Don’t be put off by medical jargon. ● Journalling: Your appointment may not always be at

a time when you are feeling at your worst. Consider keeping a pain diary or using an app to track how you feel daily and discuss it with your doctor. Be specific about what you’re experiencing and keep a log of how different treatments seem to impact. ● Questions: It can sometimes take time to find the

treatment that works best for you. Before making a decision, you should ask plenty of questions, striving to understand what you can expect from your medication, what its possible side effects are, and any other information. ● Self-management: You should also discuss a self-

management programme with your team. Exercise and nutrition play a crucial role in helping to manage your condition. Read the next section of our booklet (self-management) for more information.

By being actively involved in decisions about your care, you can help to improve the outcome, thereby allowing you to lead a more productive and improved quality of life.

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Pharmacological treatments With newer treatments options now available, most people with axSpA can lead normal, productive lives, without major limitations. There are now many pharmacological treatments available to help decrease your pain and increase your movement. The medicines used to treat axSpA fall into two broad categories; those that offer pain control, and those that are disease modifying. Pain control treatments The first-line option for pain is the use of non-steroidal anti-inflammatory drugs (NSAIDs), such as; • Ibuprofen (Brufen®, Nurofen® and others) • Diclofenac (Voltarol®, Diclomax®, Difene®) • Naproxen (Naprosyn® and others) • Celecoxib • Etorcoxib (Arcoxia, Etoricoxib) These are a class of medications used to treat the pain and inflammation involved in arthritis. They act by blocking the inflammation that occurs in the lining of your joints. They can be very effective in controlling pain and stiffness. Some are available over the counter, while others are prescription only. Usually, you will find that your symptoms improve within hours of taking these drugs, but the effect will only last for a few hours, so you need to take the tablets regularly. Anti-inflammatories are not the answer for every person but, for some, they will be enough to control their inflammation. NSAIDs may take several weeks before their effect can be judged and, if one NSAID is not effective, your doctor may recommend that you try another.

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Also, like with all drugs, NSAIDs do have side-effects, but your rheumatologist will take precautions to reduce the risk of these, for example, by prescribing the lowest effective dose for the shortest period of time. NSAIDs can cause digestive problems (stomach upset, indigestion or damage to the lining of the stomach) so another type of drug, called a proton pump inhibitor (PPI), is often prescribed to help protect the stomach. All NSAIDs have the potential to cause fluid retention (oedema) in the body and may raise blood pressure or precipitate heart or kidney failure in some individuals. There are also some individuals for whom NSAID use needs to be avoided. This includes anyone with a history of gastrointestinal bleeding, renal impairment or NSAID hypersensitivity. Speak to your doctor if you have experienced any of these in the past. Some doctors may also recommend a steroid injection for localised swelling in joints (for instance, in the fingers or toes). Steroid injections may also be helpful to reduce inflammation of the sacroiliac joints, or of a tendon (such as the Achilles tendon), but these tend to be only used on a short-term basis, when an individual is experiencing a flare-up of their condition. If you develop uveitis (eye inflammation) it may also be treated with steroid eye drops. In more severe cases, steroids may be given as tablets or as an injection into the eye.

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Disease modifying treatments Next are the disease-modifying antirheumatic drugs (DMARDs). In some circumstances, your rheumatologist may choose to use the following; • Methotrexate (Maxtrex®, Metoject®, Nordimet®) • Sulfasalazine (Salazopyrin®, Sulazine EC®) • Leflunomide (Arava®) These are a class of medications typically used on a more long-term basis to treat inflammatory types of arthritis. They help by tackling the causes of inflammation in the joints. These drugs can make a big difference to your pain and stiffness, although they may be more effective for arthritis in your arms and legs, and are not usually effective for spinal symptoms. DMARDs can slow, or even stop the progression of joint damage, but they cannot ‘fix’ joint damage that has already occurred. DMARDs will, however, change the way that the condition progresses and can prevent your arthritis from getting worse. When taking DMARDs, your doctor will ask you to attend regular check-ups and blood tests to monitor their possible side-effects, including problems with your liver, kidneys or blood count. When properly monitored, most side-effects are rare, and most are reversible by adjusting the dose or switching medications.

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Biologic therapies Biologic therapies are a newer group of diseasemodifying drugs that can be very effective in treating axSpA and related conditions. The biologic drug group also includes a category of medicines called ‘biosimilars’. These drugs are follow on versions which are independently developed after the patent protecting the original product has expired. Biosimilar medicines are intended to have the same mechanism of action as the original biological medicines, and are designed to treat the same diseases. One category of biologics, known as anti-TNF drugs, commonly used to treat axSpA include; • Adalimumab (Humira®, Amgevita™, Imraldi™, Hulio™, Yuflyma®, Hukyndra®, Idacio®) • Certolizumab pegol (Cimzia®) • Etanercept (Enbrel®,Benepali®, Erelzi®) • Golimumab (Simponi®) • Infliximab (Remicade®, Remsima® SC, Inflectra™) They work against inflammation in a different way, in that they are much more targeted and more specific. They block a central cytokine called TNF (tumour necrosis factor), which relates to inflammation in the spine, and they halt disease activity, slowing the progress of joint damage and other symptoms of axSpA. Not every person with axSpA will need anti-TNF therapy. But, in general, people with active disease in the spine, or who are experiencing swollen and painful joints elsewhere in their body, and who have not fully responded to NSAIDs are suitable. People taking these medications tend to see a significant impact on their

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level of pain, stiffness and inflammation and those people are usually able to reduce or even eliminate the use of NSAIDs. Another group of biologic therapies, Interleukin (IL) Inhibitors, treat axSpA by blocking different types of molecules, called interleukins, that cause inflammation in the body. These drugs work by reducing or slowing inflammation and limiting tissue damage caused by an overactive immune system. They are typically administered through an injection and include; • Secukinumab (Cosentyx®) • Ixekizumab (Taltz®)

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JAK inhibitors are the latest class of synthetic (nonbiologic) disease modifying anti-rheumatic drugs available to treat axSpA. These drugs work by limiting the action of certain enzymes involved in the initiation of the inflammation process which causes the symptoms of axSpA. JAK inhibitors are available in tablet form (taken daily) and currently two options are available: • Tofacitinib (Xeljanz®) • Upadacitinib (Rinvoq®) These medications may not be the first treatment option for you and you may be initially prescribed a biologic therapy. However, if JAK inhibitors are a treatment option, you will be assessed by your doctor for certain risk factors before these medications are prescribed. Possible side-effects All medication comes with possible side-effects, which you can discuss with your healthcare team. They can increase the risk of infection, including colds, diarrhoea and urinary tract infections. In addition, because these drugs essentially restrict the immune system, people using them may need to take extra precautions before receiving vaccines that contain live viruses (such as polio or rubella). However, it is recommended that anyone on these treatments be immunised against the flu every year, and receive the pneumonia vaccine every five years. Because some of these medications can cause or worsen inflammatory bowel disease, such as ulcerative colitis or Crohn’s disease, you will need to declare these conditions to your doctor. Also, if you currently have, or have had, tuberculosis, inform your doctor before deciding to take these medications.

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Planning pregnancy When planning for a baby, it is best to discuss your plans in advance with your healthcare team. Sometimes it will be necessary to change or alter the dose of your current medication to protect your baby. This applies to men also, as some of these medications can lower sperm count and cause problems with the baby’s development. If planning pregnancy, you are likely to require more frequent monitoring. Keeping up-to-date Information and advice about medication is constantly changing, with new drugs becoming available frequently. To ensure you have the latest information, call the Arthritis Ireland helpline (0818 252 846) for more up-to-date information.

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Non-pharmacological treatments The other treatments involved include physiotherapy and, possibly, surgery. Physiotherapy is a crucial part of the treatment and management of axSpA, particularly since back pain is one of the main symptoms.

Physiotherapy Typically, an exercise and posture programme will be designed by a chartered physiotherapist, tailored specifically to you and your condition. The details will depend on your lifestyle and whether you have any other health issues or conditions. Some individuals will present mostly with back pain, but others may have coexisting problems with other joints, such as hips or ankles. The good news is that regular physical activity can help alleviate pain, increase spinal mobility and functional capacity, reduce morning stiffness, correct postural deformities and increase mobility in individuals facing the challenges of axSpA. It can also positively impact the low mood and depression often associated with having a chronic condition.

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Posture It’s important to exercise your back and neck to avoid them stiffening into a bent position. Try to be aware of your posture and correct it, not only during exercise times, but also during the day when you are standing, sitting and walking. Neutral spine refers to the optimal alignment of the spine. In this position, the joints, muscles and ligaments of the spine are under the least strain. Three curves should be present - an inward curve at the neck, a small outward curve at the upper back and a small inward curve at the lower back lumbar. Try to imagine these small curves in your spine. Maintaining ‘neutral spine’ is a key element of ensuring the effectiveness of your exercise programme. If you perform exercises in a poor position, this will cause extra strain on the spine. This could potentially lead to injury and pain when performing exercises. Stretching Stretching is particularly helpful for people with axSpA, so do aim to stretch daily if possible. Here are four simple daily stretches to help get you started. Always warm up before exercising. March on the spot for a few minutes to increase the blood flow to your muscles and to reduce the risk of injury. 1. Hip flexor stretch in standing - put one leg in front of the other, lean forwards, keeping your chest up and then lift up both of your arms as high as you can. Repeat five times on each side, alternating legs.

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2. Hip and knee flexion in standing - stand facing the wall for balance, lift up your knee as high as possible. Repeat for other knee and do five times on each side. 3. Cat stretch - on all fours, and in a balanced position, lift up your middle back as high as you can to make an arch, hold then release and hollow your back. Repeat four or five times.

4. Spine rotation in sitting - sitting tall with a stick held behind your back, rotate your body to either side, keeping your chest tall. Repeat four times on each side. In addition to the above, your physiotherapist may suggest breathing exercises, designed to maximise chest expansion and lung volume, particularly if axSpA affects your chest.

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Tips to Improve Posture Becoming more aware of your posture through posture training is especially important for people with axSpA as the spine is vulnerable to becoming ‘frozen’ in an awkward position. The following tips will help you to become more aware of your posture on a daily basis; ● Move your spine regularly – avoid sitting for too

long, even in an ergonomic office chair. Stand up and walk around as regularly as once every 45 minutes or more. While you’re up, be sure to stretch your arms, legs, and back. ● Be mindful of your position at a computer – keep

both of your feet flat on the floor and relax your shoulders. Keep your back aligned against the back of your chair and your elbows close to your side. Avoid leaning forward or slouching and keep your chin down, eyes level with the screen.

We run free exercise programmes across the country, called ‘Be Active with Arthritis’, delivered by chartered physiotherapists. For further information, please visit the courses section of the Arthritis Ireland website.

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● Keep everything within reach – ensure everyday

items at home, such as the ironing board, are at the correct height to avoid stooping and try to always sit on a high stool when cooking and preparing food. Rearrange cupboard and drawers so that the things you use the most are nearby. When hoovering, extend it to prevent stooping (always aiming to keep your back straight). Use the power of your legs and walk with the hoover, moving back and forth with the sweeping action. ● Be careful when lifting – avoid twisting or turning

your trunk or neck when lifting anything or reaching back to get something in a seated position, such as in your car or at a desk. Make it a habit to always lift with proper posture – knees bent, back straight and hold the load as close to your body as possible. If something is simply too heavy, ask for help. ● Get comfortable when driving – as you may have

increased pain and stiffness during long drives, be sure to stop every hour to walk and stretch. A slim pillow, folded behind your back, may help you to be more comfortable. Make sure to properly adjust your seat, headrest, and steering wheel. ● Always wear good, supportive shoes – particularly

when going out walking. Some people with axSpA can develop plantar fasciitis. The most common symptom of this is pain in the heel or bottom of the foot. Running shoes are the most supportive option, but you may also need to buy special insoles or orthotics.

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● Think tall when standing or walking – your head

should be balanced over your shoulders; your shoulders should be balanced over your hips, and your hips should be balanced over your legs. Draw your chin back as if making a double chin. Bring your shoulders back and down and tighten your stomach muscles by bringing the belly button back to the spine. Tuck down your tailbone and maintain even breathing throughout. Adapting your home You may be able to get help with costs for equipment or adaptations to your home, if they are necessary. Contact the Housing Department of your local authority to see whether you are eligible for assistance.

Arthritis Ireland’s online shop offers a wide range of products to make day to day living with Arthritis easier. https://shop.arthritisireland.ie

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Choosing a supportive mattress The back pain and stiffness associated with axSpA can make getting a good night’s sleep a challenge. But a good mattress can make all the difference, not just to your sleep quality, but also to your spine in the longer term. Follow our tips for selecting the best type of mattress for someone with axSpA; ● Remember that a mattress’s lifespan is about 8-9

years, depending on the level of wear and tear. An old mattress will sag or bow, which is detrimental to your spine. ● A medium firm orthopaedic mattress is usually

recommended. A mattress that is too firm won’t mould to your body, and one that is too soft will not properly support your spine. ● Always try out a mattress before purchasing and

remember that custom options and memory foam mattresses are not always the most comfortable choice. ● Lie down on the mattress and slide your palm down

between the small of your back and the mattress. Generally speaking, if there is a large gap, the mattress is too firm; if there’s no gap, it’s likely too soft. If your hand can just pass through, then it is probably just right.

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Surgery Surgery to treat axSpA is very unusual. However, in rare situations, where other treatments do not relieve severe axSpA symptoms, spinal surgery may be considered appropriate. This tends to only relate to those who have developed curvature of the spine, nerve damage, spinal instability or severe hip joint problems.

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Managing axSpA The time you spend with your healthcare team will be little compared with the time that you spend living with your condition. The good news is that, in addition to being treated with medication, there are many tools and techniques that you can use to manage your pain, energy levels and mood. We refer to these as selfmanagement skills. Anyone can learn these skills and will benefit immensely from them.

Self-management Self-management is an active approach to your condition. It is the use of skills (or tools) to help manage living with axSpA, and to be able to continue doing the things you enjoy, whilst also dealing with the emotions brought about by your condition. In this way, selfmanagement is the opposite of simply dealing with your condition in a passive way, where you rely entirely on your medications and your clinicians for help. Self-management skills include; • Maintaining a healthy lifestyle. This includes regular exercise, healthy eating and giving up smoking (if you currently smoke), as well as developing good sleep habits and managing stress and difficult emotions. • Managing fatigue. • Managing flare-ups. • Managing work. • Managing finances.

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The good news is that you do not need to learn all the skills at once. Simply aiming to add them to your repertoire, one by one, makes the difference. Take your time to learn what works best for you, tailor it to your lifestyle, and always prepare to be flexible – there will be times that you simply cannot incorporate all the skills. Accept that and do your best, always aiming to get back on track as soon as you possibly can.

Our Living Well with Arthritis Programme teaches a range of proven self-management techniques to help improve your day-to-day life. Find out more under the ‘courses’ section of the Arthritis Ireland website.

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Physical activity If someone living with axSpA becomes sedentary, this will inevitably cause a decrease in their muscular strength and ability to move and function in the long term. This could make inflammation, swelling and pain even worse. In more serious cases, the bones of the spine can link up, or fuse together, so the importance of moving and exercising regularly (to reduce this risk) cannot be overemphasised.

Most people face barriers to exercise, including a perceived lack of time, energy or resources, but someone with axSpA will face even greater barriers because they are living with pain and stiffness. The irony is that the very people who could benefit the most from daily exercise are the ones that can find it most difficult. To get over this, try to block off times for physical activity, and make sure your friends and family are aware of your commitment. Ask for their encouragement and support.

Regular (daily) physical activity is considered a key component in the management of axSpA.

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How to build it in easily Set yourself a small, realistic goal and think about daily physical activity that you can build into your life easily, rather than anything too big or unrealistic. You could consider the following easy ways to build exercise in regularly; • Follow a stretching routine every time you get out of the shower, which may be helpful in the morning or evening. • Exercise during a break while watching TV. • Schedule a ‘catch-up’ with a friend by choosing to walk or play golf together. • Collect your daily paper or milk on foot or bicycle if it’s safe and practical. • Set reminders on your phone to take regular breaks to stretch or exercise. • Schedule exercise, just as you would schedule an important appointment. • Get off the Dart, Luas or bus a few stops earlier and walk the rest of the way home. • Set attainable exercise goals that you can stick to (such as walking 30 minutes a day three times a week) and track your progress as you go. Aim to be flexible and realistic. There are some days that you just won’t be able to fit your exercise in. If you miss a few days or even weeks, do not beat yourself up. Instead, learn from setbacks and aim to get back on track as soon as you can.

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A combined programme Your physiotherapist will design an exercise programme specifically tailored to you. A combined exercise programme (incorporating flexibility, strengthening, and aerobic exercises) will be the most beneficial. Remember, any physical activity is better than none for most people. Choosing activities that you enjoy increases the chances that you will keep going with the exercise habit. Physical activity benefits The fitter and more mobile you are, the greater your ability to deal with the symptoms of axSpA. Not only that, but the mental health benefits are numerous, making it easier for you to cope with living with a chronic condition. Here we have listed the most important and relevant benefits of physical activity for someone living with axSpA: ● Greater flexibility, meaning you can do everyday

tasks without major difficulty. ● Improved posture, meaning a reduction in back pain

and associated pain. ● Overall reduction in stiffness and pain, meaning

you may sleep better. ● Maintenance of bone strength, including offsetting

age-related decline in bone mass. ● Increased energy and mood, meaning an

improvement in your overall wellbeing. ● Help with weight control, as muscle is metabolically

active so the more muscle you have, the more calories you burn, even at rest. ● Improved heart health, including reduction in LDL

cholesterol and lowering of blood pressure.

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New to physical activity If you have never exercised much before, or have had a long break from it, there is no need to worry. It is never too late to start (or return). You could consider any of the following; Walking: Going for a walk can be one of the easiest ways to fit in some cardiovascular activity, whilst keeping your hips and back flexible. Make a date with a friend or partner to do an evening or midday walk. Swimming: This is a great exercise to help improve general fitness, flexibility, and strength in a safe, low impact environment. Aqua-aerobics classes are also a fun, effective way to stay active. Cycling: This can be a great low-impact activity for people with axSpA, but be wary of types of cycling where you are hunched forwards, such as in a spinning class. Make sure the bike you choose provides a comfortable, upright position. Golf: Although not considered a ‘true’ exercise by some people, golf does, in fact, help to maintain your fitness simply through the amount of walking involved. Importantly, for those with axSpA, golf also helps to maintain spinal and shoulder range of movement.

It is crucial that you work closely with your rheumatologist to ensure that your disease is as well controlled as it can be so that pain, inflammation and stiffness do not become barriers to you engaging in physical activity.

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Pilates, yoga, or tai chi: These activities can help improve strength and range of motion. Classes incorporate exercises and postures aimed at maintaining balance through strength and flexibility. Ensure that you start at a beginner’s level and learn the correct techniques before progressing to intermediate. Gym classes: These can help keep you motivated, particularly if you find it difficult to get out for a walk or golf when the weather is wet and cold. Do inform your gym instructor of your condition so that they know how to tailor the class to you and your needs. Caution with contact sports: these activities include rugby, karate, hockey, hurling and Gaelic football. Caution should be taken when considering playing these sports when living with axSpA. Part of your condition means that you are more at risk of having thinner bones (osteoporosis). This, combined with possible stiffening of the spine, means that you may also be at risk of sustaining a break to one of the bones in your spine (your vertebrae). Also, be wary of high impact activities that involve jarring movements. The exercise you choose should not cause an increase in pain. If this occurs, it is advisable to stop and seek guidance from your physiotherapist.

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Healthy eating The general advice is to follow a healthy diet, particularly one that will help you to maintain a healthy body weight. Being overweight puts an extra burden on your weight bearing joints (back, hips, knees, ankles and feet), which can all be affected by axSpA. Maintaining a healthy weight is therefore one of the most important things you can do to help manage your condition. To reach, and maintain, a healthy weight, the best advice is to exercise regularly and follow a sensible, balanced diet; ● Include plenty of vegetables and fruits – aim for

5-7 portions a day, include plenty of colours and limit fruit juice to just one serving once a day. ● Add protein – choose around 2 servings per day,

from fish (try to include oily fish once or twice a week), lean meat, chicken, eggs, beans, pulses and nuts. Limit processed meats, such as ham (including chorizo, pepperoni or salami), sausages and rashers. ● Include milk, yoghurt and cheese – 3 servings a

day for most (or 5 for children age 9-12 and teenagers age 13-18). ● Limit or avoid foods that cause inflammation –

such as refined carbohydrates, fried foods, red meats, and sugar-sweetened drinks. Try wholegrain, brown versions of carbohydrate foods, such as brown rice or pasta – the number of servings of carbohydrates

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depends on your age, size and gender, with 3-5 being the general recommendation (and up to 7 per day for teenage boys and men aged 19-50). ● Reduce sugar intake – rather than just eliminating

sugar, try swapping for healthier versions, such as honey as a sweetener, fruit bars made from dates and nuts, or dark chocolate (70 per cent) as a treat. ● Avoid cooking with, or adding, lots of fat – choose

rapeseed, olive, canola, sunflower or corn oils. Limit mayonnaise, coleslaw and salad dressings. Consider using a spray oil for cooking and cut down on the amount of butter you use. Always cut visible fat off meat and opt for leaner cuts when buying. ● Drink at least eight glasses of fluid a day – water

or herbal teas are best. Serving guide For carbohydrates and vegetables

a 200ml cup = 1 serving

For cheese

two thumbs (width and depth) = 1 serving

For meat, poultry and fish

the palm of the hand, width and depth without fingers and thumbs

For oils

use just 1 teaspoon per person for cooking or in salads

*Details and serving sizes have been taken from the Department of Health’s Healthy Food for Life Food Pyramid (2016).

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Supplements No specific diets have been discovered to be effective in treating axSpA and more research is needed to investigate the link between diet and axSpA. There have been some studies that have shown essential fatty acids (found in oily fish) can ease joint pain and stiffness so, if your diet is low in these foods, it may be worth taking an omega-3 supplement. Also, since having axSpA can increase your risk of osteoporosis, which makes bones thinner, you could consider supplementing vitamin D and calcium. Vitamin D is produced in the skin on exposure to sunlight. However, during winter, in certain latitudes (such as Ireland’s), the sun is too weak to allow for adequate vitamin D to be produced in the skin. Also, very few foods contain vitamin D (mostly oily fish, such as salmon, tuna and mackerel) meaning supplementation (or buying fortified products, such as fortified milks and yoghurts) is often advisable. In terms of calcium, dietary sources include dairy foods such as milk, yoghurt and cheese, calcium fortified foods (such as soy products) and some leafy green vegetables and nuts and seeds, but many people also add calcium supplements to their regime in order to help maintain bone health.

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Good sleep habits Quality sleep is not always possible when you are dealing with a chronic condition, but it’s worth aiming for. Deep restorative sleep has been proven to help improve pain and fatigue.

Sleep hygiene tips • Avoid screens at least one hour before bedtime. • Try not to exercise within two hours of bedtime. • Avoid a big meal within two hours of bedtime. • Ensure your muscles are as relaxed as possible – consider taking a warm bath with Epsom salts (these contain magnesium which works on the central nervous system to help you to relax and to induce sleepiness). • Consider buying blue light blocking glasses for screen-use from 6pm onwards. • Some people may benefit from a weighted blanket to help them sleep at night.

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• Avoid caffeine from midday onwards – this includes tea, coffee, cola, energy drinks and even chocolate. If you are going to have alcohol, try to stick to just one drink. • Aim to go to bed at roughly the same time every night, if possible. • Set your alarm and try to get up at the same time every day. • If you struggle with getting to sleep, or staying asleep, aim to do some meditation, even just for 10 minutes every day, to help induce relaxation. • Once in your bed, do not focus on trying to get to sleep and, if you are unable to fall off to sleep after 30 minutes, get up and do something else for a short while. • Return to bed, having had a warm, milky drink or relaxing herbal tea. • If you continue to struggle to get to sleep, take deep breaths - focus on emptying your lungs slowly and steadily, while counting on your fingers. Aim to extend the out-breath to a count of 15-20. Then take a deep breath in through your nose. Repeat five times. • In some circumstances medications for sleep may be necessary or some people experience results with herbal sleep remedies.

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Managing stress and difficult emotions Sometimes you may feel overwhelmed by how axSpA affects you and your life. This can understandably lead to feelings of anger and, in some cases, depression. Some people may be fearful about how badly their disease might progress and what their physical abilities may be in the future. Whatever you are feeling, those feelings are entirely valid.

There are many people who live with axSpA and they find that it doesn’t impact their life as much as they expected. Or there are other people who go through flares, but then their condition settles down again, or even goes into remission. Not everyone with axSpA will struggle with stress or emotional challenges, but if you do, that’s understandable and there are things you can do about it. Coping techniques ● Self-care: The lifestyle tips that can help manage your condition can also help manage your mood, including regular physical activity, eating a healthy balanced diet and practising good sleep hygiene. ● Acceptance: Accepting and being open about the

fact that you have a condition can go a long way to helping to cope with the associated stress. When you recognise that you have needs due to your condition, and you attend to those needs, you are much better equipped to deal with the challenges. 48

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● Asking for help: You could think about paying a

cleaner or getting a handy person in to help with the bigger tasks around the house. ● Getting inspired: Look to other people living with the

condition who are managing well. Some people with axSpA still manage to play elite sports and to live very normal lives. Visit the Arthritis Ireland website to be inspired. ● Getting support: Research shows that feeling

supported by others is linked to people experiencing less intense pain, less depression and anxiety and an improved quality of life. Talk to someone else experiencing the same, or a similar, condition. Ring our helpline (0818 252 846) to talk to someone who understands what it is like to have arthritis. ● Better communication: Living with axSpA may also

affect your relationships. Sometimes a partner may feel rejected (sexually or emotionally), but when the day-to-day realities of living with axSpA are properly explained to them, they may see things in new light. ● Honesty: Talk as openly and confidently as possible

with your healthcare team. If you can communicate how you feel and how you have been doing since your previous appointment, it can help them to tailor the treatment to you more specifically. If you are experiencing feelings of low mood or depression, be honest about that in order to get the help you need. ● Therapy: Many people find counselling or therapy

can help them process their feelings about dealing with the challenges of a chronic condition. Contact the Irish Association for Counselling & Psychotherapy for a list of registered accredited therapists (www.iacp.ie).

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Smoking Smoking is believed to be one of the triggers of developing axSpA and, once you have the condition, if you continue to smoke it is likely that your symptoms will be worse. Not only that, but some evidence suggests that smoking can reduce the effectiveness of treatments for axSpA. Stopping smoking is one of the best things you could do. Ring the National Smokers’ Quitline on 1800 201 203 or visit www.quit.ie

Managing fatigue Fatigue is extreme tiredness from mental or physical exertion, or from illness. It is probably the most common symptom experienced by people living with a chronic condition. It can occur even when the person is getting their recommended eight hours sleep each night, but they still feel drained of energy. Feeling fatigued can lead to aggravated pain, and a feeling of loss of control, feeling irritable or frustrated. People around you cannot usually see your fatigue and, therefore, they may think that you’re just not interested in certain activities, or that you want to be left alone. Sometimes even you, yourself, may not realise that fatigue is having an impact on how you feel. Here are some things that could help manage your fatigue;

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● Be wary of inactivity: Muscles that aren’t used often

enough become deconditioned. This can happen to the heart, which is a muscle in itself and can lead to the heart not pumping blood as well as usual, leading to nutrients and oxygen not being carried to parts of the body where they are needed. ● Try not to overdo it either: Perhaps you are

overdoing it and taking on too many responsibilities? If, for instance, you are cleaning your house every day, you may need to rethink that and whether you could do with extra help, or else learn to live in a house that is not always spotless. ● Consider nutrition: Think about whether the quality of your food intake has been poor recently, and what you can do to get it back on track. ● Think ‘little and often’: Learn how to pace yourself

by spreading out activities and events, or by saying ‘no’ to things that you know will fatigue you. If you are meeting someone, try to keep it to an hour so that you don’t feel too drained after. ● Schedule time for rest: Scatter breaks and ‘me time’

throughout your day and week, even if it’s just ten minutes here and there. ● Consider emotional drains: Relationships with

people who demand too much from you (this can include loved ones and family) need to be looked at. This is when healthy boundaries need to be put in place in order to protect your already depleted energies. Learning to say ‘no’ is a skill that takes practice but is essential. ● Talk it through: Explain to your loved ones and work

colleagues that fatigue is one of the axSpA symptoms you experience and let them know that you may need help and support. This may mean family members taking on extra chores and delegating tasks at work until you start to feel better.

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Managing flare-ups A flare, or acute episode of inflammation, typically occurs when you have painful or swollen joints. These periods will be interspersed with other times, when your condition seems much more manageable, or settled. The best advice is to plan ahead, since flares can be part and parcel of managing a chronic condition. Putting self-management tools and techniques into place – even the simplest ones – can have a big impact during these times. Consider trying some of these tips: ● Learn to recognise a flare: It can take years for

someone to recognise how a flare manifests. A sure sign is if you are feeling more fatigued or in more pain than normal. ● Take anti-inflammatories and painkillers: It’s

important to know the maximum dosage you should take in a 24-hour window. Write down every time you take medication as it’s easy to lose track, particularly if fatigued and sleep deprived. Always seek advice from your healthcare team when considering different or new medication.

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● Get plenty of rest and sleep: Prioritise rest and

recovery. Say ‘no’ to things that will drain you and ask for more help around the house if you need to prioritise time for exercise and self-care to help you to get back into a more comfortable place with your condition. ● Try gentle exercise and stretching: We know that if

you’re struggling, exercise might be the last thing you want to do but keeping active will help alleviate pain and stiffness. ● Apply hot and cold therapies: Heat (delivered

through a heat pad or water bottle) dilates the blood vessels, stimulates blood circulation, and reduces stiffness and muscle spasms. Cold compresses, on the other hand, can reduce inflammation, swelling, and pain related to arthritis and activity. ● Relax in a warm shower or bath: The warm water will

help relax tight muscles and stiff joints. Add a cup of Epsom salts to help relax muscles and aid sleep. ● Use relaxation techniques: Some people find

guided breathing, meditation, massage (if you’re not too sore) or a sauna session can get them through these stressful times. ● Accept what you can and cannot do: You may

need to cancel appointments, or reschedule your diary to take account of your flare. If your flare-ups increase in frequency or intensity, it’s important to seek advice from your rheumatology nurse specialist as your medication, or the dose, may need tweaking. We run self-management programmes across the country, called ‘Living Well with Arthritis’. For further information, please visit the Arthritis Ireland website.

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Managing work Approximately two-thirds of people living with axSpA report work-related issues, like having to take sick leave or reduce working hours. If you have a chronic disease, it is inevitable that you may have days when you’re not well enough to work. When you are well enough, it’s all about managing your energy levels, which presents a huge challenge in workplace cultures that place a premium on constant productivity. However, with the right support, continuing to work can be very valuable for anyone living with a chronic condition as it not only minimises the negative financial impact of chronic illness, but it also positively contributes to a person’s mental health, whilst also providing social connection. If you can continue in employment, consider the following; ● To disclose or not? It is a personal decision whether

you disclose your condition, but effective, early communication – with the appropriate colleagues – can be very helpful. Working beyond your physical and/or mental limits can result in poor work quality and increased health risks, which satisfies neither you nor your employer. ● Go gently: After your initial diagnosis, you may find

it tough to go to into work. If possible, see if you can work from home but, if not, go gently with yourself and explain the situation to your manager and HR. Explain that things should improve once your medication takes effect.

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● Seek flexible employers: Seek out an employer

who will trust that you’ll get the work done, despite your condition. For this to take place, flexibility is key. Although it’s not always possible, seek out careers or workplaces that allow some level of flexibility in terms of alternating your schedule when it becomes necessary. ● Prioritise your health: Managing a chronic illness

is often unpredictable and frustrating. You’re going to have good days and bad days. If you’re not at your best, then you can’t do a good job. Attend to your own needs – ask for necessary breaks and always prioritise your medical appointments (you can always make up the missed time the following week). ● Engage in negotiations: You may be able to

negotiate flexible working hours with your employer – start and finish time, working from home, flexi working, reduced hours or more frequent rest breaks. You could also discuss a new role within the same organisation which may better fit your work ability and performance for now. ● Manage your work environment: Your employer can

be expected to make special accommodations, such as providing ergonomic furniture and environmental adaptations (read more about this on following page). Consider personalising your work station to embrace self-care, such as a drawer for healthy snacks, a lavender candle, a plant or air purifier, or a diffuser with essential oils.

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● Work out your commute: Be mindful of this. It

should be part of your negotiation. For instance, maybe you could start a little later or finish a little earlier, for example, to avoid having to manage busy commuter trains or buses. ● Get used to delegating: Don’t be afraid to delegate,

especially during flare-ups. Recognise the benefits of delegating and reframe your thoughts around sharing the workload. ● Believe in yourself: It’s natural to worry about going

for a promotion, stepping up to lead a big project, or applying for jobs while you’re simultaneously managing health concerns. But don’t doubt yourself, just because you have a chronic illness. If you know that you can do it, you can. Likewise, if you think you’ll be overwhelmed, then listen to your instincts and hold back for now. A small number of people find they have to stop work altogether. This is never an easy decision, and it is important to get professional advice about your rights and options. However, giving up work does not have to be a permanent situation. Things could change in the not too distant future.

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Returning after a break If you have been out of the workforce for a significant time, due to ill-health, then you might be feeling low in confidence about your abilities. Retraining, further education and voluntary work could make a huge difference to your confidence levels. The Adult Education Guidance Service (www.aegai.ie) for your county can provide guidance as to your education and training options. Alternatively, your Intreo Centre or Social Welfare Branch Office can advise you about job opportunities – visit wwww.citizensinformation.ie for more information. Legislation that supports you You have rights and entitlements as a worker with a chronic illness. Under the law, employers must make ‘reasonable accommodation’ for employees who have a disability. An employer is obliged to take appropriate measures to enable a person who has a disability to work, unless those measures would impose an unreasonable burden on the employer. This should allow you to do your job as easily as possible and/or to improve the physical environment in which you work. If having axSpA is debilitating a person’s everyday life, or if their condition significantly limits their activity and participation in life, then that is deemed to be a disability.

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Managing finances A diagnosis can be stressful enough, but equally worrying can be the costs for medical treatments, home renovations and other expenses associated with having axSpA. Some people with chronic conditions may be forced to retire earlier than they had planned, resulting in a loss of income and potential retirement savings. That is why educating yourself about what supports are available is crucial in helping to manage your finances.

Accessing benefits The Citizens Information Board offers a comprehensive booklet that outlines all entitlements for people with a disability, including rights relating to work, education and training. You can get this booklet, Entitlements for People with Disabilities, by visiting your local office or contacting them on LoCall 0818 074 000 or www.citizensinformation.ie. Social insurance payments You may be able to apply for state benefits to help with the extra costs of having arthritis. Some of the main disability related payments include; ● Illness benefit: This is a short-term payment made

to people who are unable to work due to illness. To qualify, you must be aged under 66 and unable to work because of your illness. Your PRSI contributions or credits must be up to date. If you don’t have enough PRSI contributions, you can apply for the means-tested Supplementary Welfare Allowance. 58

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● Invalidity Pension: This pension is payable for as

long as you are unable to work. At the age of 65, the personal rate of payment increases to the same rate as the State pension (Transition). At age 66, you will be transferred to the State Pension (Contributory). If you are receiving Illness Benefit or Invalidity Pension you cannot work (except for unpaid voluntary work). If you want to work, you must transfer to Partial Capacity Benefit. Please contact the Citizens Information Service for more information. Other benefits ● Living Alone Increase is payable regardless of age. If you live alone, you may also qualify for free travel and the Household Benefits package, which includes allowances towards household bills. ● The Treatment Benefit Scheme is a scheme run

by the Department of Social Protection that provides dental, optical and oral services to people with the required number of PRSI contributions. Disability allowance This long-term payment is means tested. You may be entitled to disability allowance if you are aged between 16 and 66 and satisfy both a means test and a habitual residence test and have a specified disability which results in you being substantially restricted in undertaking suitable employment. Your means and that of your spouse or partner are considered. Your parents’ means are not considered. If you are getting Disability Allowance or Blind Pension you may keep your payment and do some work. You must notify the Department of Social Protection when you start work. Free travel If you are awarded disability allowance, you get a free travel pass automatically. This allows you to travel www.arthritisireland.ie

for free and your spouse or partner to travel for free in your company. If you are medically assessed as being unable to travel alone, you may be entitled to a Companion Free Travel Pass, which means any person over 16 years of age can travel with you for free. Tax relief You may get tax relief on certain health expenses which you have incurred and for which you have not been reimbursed. The tax relief is at the standard rate of tax of 20%. So, if you spent €1000 you would get a refund of €200. This claim should be made through your annual income tax return available from your local tax office or online at www.revenue.ie. With regards to driving, there are various means tested supports available including grants for adapting a vehicle. The Irish Wheelchair Association (www.iwa.ie) provide advice and information on all aspects of motoring for people with a disability.

If you have any questions about living with axSpA, please contact Arthritis Ireland’s Helpline on 0818 252 846, available Monday to Friday from 10am to 4pm.

Many benefits can be complicated and time consuming, so it’s worth getting expert help and advice from; • A social worker from your local health office. • A Housing Welfare Officer from your local authority. • Your Citizens Information Service: 0818 074 000. • Your local Social Welfare Office.

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Accessing the Health Service Medical cards Most medical cards are granted on the basis of a means test and/or medical need. Each case is decided on its merits, but you may qualify if your income is not much above the guideline figure and your medical costs are exceptionally high. It may be possible for one or more members of a family (who would not otherwise qualify) to get a medical card in their own right if they have high medical expenses or needs. GP visit cards The purpose of the card is to help people who are not eligible for medical cards with the costs of visiting a doctor. The card covers you for GP visits, but nothing else. The income limits for the GP Visit card are higher than the medical card income guidelines. Drugs payment scheme With the Drugs Payment Scheme (DPS) card, an individual or family in Ireland only has to pay a maximum amount monthly for approved prescribed drugs, medicines and certain appliances. Everyone in Ireland who doesn’t have a medical card should apply for the DPS card. For more information see www.drugspayments.ie. Hospital charges Every person resident in Ireland is entitled to be treated free of charge in a public bed in a public hospital. Some people may have to pay maintenance charges. Outpatient services, when you are referred by your GP, are also provided free of charge.

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Become a friend of Arthritis Ireland Not everyone knows about arthritis. About the pain, the frustration. Not everyone can see past the invisibility of arthritis.

Not everyone knows that arthritis affects all types of people. That it does not discriminate. It affects young and old, indifferent to gender and race, people from every type of background. Arthritis affects the human condition. With your help we can change this. With your support we can build a better world for people living with arthritis today, and a world without arthritis tomorrow.

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With your help we aim to: • Help anyone looking to understand their arthritis • Support anyone living with arthritis to live well, and to live as full and active a life as possible • Advocate for improved and accessible services • Ensure that arthritis is diagnosed as early as possible • Invest in research to find a cure for arthritis But we can’t do it without you, without your help. As a friend of Arthritis Ireland you can change the balance. As a friend of Arthritis Ireland you will be part of a strong and vibrant community. You can help win the fight against arthritis – for as little as €10 per month.

If you would like to sign-up to hear from us with news and updates about arthritis research, courses, events, campaigns and fundraising please send your contact details to info@arthritisireland.ie

Become a friend €10 per month Yes, I would like to help manage the pain of arthritis. Monthly payment of €10 (€120 per annum). Monthly payments by direct debit only. See reverse for details. Personal Details Name Address: Telephone: Email: Date of birth Yes

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Cheques & Postal Orders Payable to Arthritis Ireland

Payment details SEPA Direct Debit Mandate By signing this mandate form you (A) authorise Arthritis Ireland to send instructions to your bank to debit your account and (B) your bank to debit your account in accordance with the instructions from Arthritis Ireland. As part of your rights, you are entitled to a refund from your bank under the terms and conditions of your agreement with your bank. A refund must be claimed within 8 weeks starting from the date on which your account was debited. Your rights are explained in a statement that you can obtain from your bank.

Please complete all marked fields Debtor Name Debtor Address

City / County Debtor A/C Number IBAN

Debtor Bank ID Code BIC Recurrent

Type of Payment

One off

Signature(s*)

Date of Signature* Amount of Direct Debit *

€

Date of First Payment* * Arthritis Ireland will debit your account for the amount indicated above from the first day of each month until further notice. Creditor Name: Arthritis Ireland Creditor ID: IE90SDD360028 Creditor Address: 1 Clanwilliam Sq, Grand Canal Quay, D 2 Unique Reference No. (URM) For Office Use Only Note; If you are a PAYE taxpayer or are self-employed, gifts of €250 in one year (€21 per month) is worth an extra 44.9% to Arthritis Ireland at no additional cost to you.

Arthritis Ireland 1 Clanwilliam Square Grand Canal Quay Dublin 2, D02 DH77 www.arthritisireland.ie info@arthritisireland.ie Helpline: 0818 252 846

@Arthritisie ArthritisIreland.ie @arthritisie Arthritis Ireland

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This booklet has been produced with support from:

All content and views expressed are those of Arthritis Ireland, not of the sponsors. RCN: 20011123; CHY: 6297; CRO: 7893. Published November 2023