RAISING THE VOICE OF PATIENTS:

A Patient’s Guide to Living with

Rheumatoid Arthritis in Australia

1st Edition

Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis in Australia1st Edition ©2020 Global Healthy Living Foundation, Inc

Welcome to the first edition of CreakyJoints Australia’s Patient Guidelines for Australians living with rheumatoid arthritis (RA). This guide is the first of its kind in Australia and is developed by patients, doctors and other healthcare providers. It’s designed as a roadmap to help you navigate your rheumatoid arthritis treatment journey and to help you access the help you need and deserve.

It offers detailed explanations of:

• Symptoms and their causes.

• Treatment plans.

• Treatment options.

• Integrated and alternative medicines and therapies.

• Diet and exercise advice.

• Tips on how to talk to your family and friends about RA and how it impacts your life.

Our patient guidelines will be updated regularly as new research, information and treatments on RA become available. CreakyJoints Australia plans to produce patient guidelines for other conditions, such as psoriatic arthritis and ankylosing spondylitis, in the near future.

Note: Terms highlighted in blue throughout this document have been explained in more detail in the Glossary.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in

your care and wellbeing.

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Chapter One: CreakyJoints Australia _____________ 4 About CreakyJoints Australia ______________ 4 CreakyJoints Australia Patient Charter ______ 4

Chapter Two: Rheumatoid Arthritis Overview _____ 6 What is rheumatoid arthritis (RA)? __________ 6 What causes rheumatoid arthritis? _________ 6 How does rheumatoid arthritis affect the body? _ 6 How is rheumatoid arthritis diagnosed? ____ 7 The benefit of early diagnosis _____________ 8 How is rheumatoid arthritis treated?________ 8

Chapter Three: You Have RA: Now What? _________ 10 Your health, your plan ___________________10 Choosing your healthcare team ___________10 Your first appointment with a rheumatologist _13 Questions to ask about treatments ________13 Other therapies _________________________14

Advocate for yourself – and everyone else on this journey _________________________14

The goal – remission ____________________14

Chapter Four: Dealing with Your Diagnosis ______ 16 Reaching out for support ________________17

Chapter Five: RA Treatment Guidelines__________ 18

Chapter Six: Monitoring Your RA _______________ 20 What can blood tests detect? ____________20 Patient-reported outcomes (PROs) ________21

Chapter Seven: The Australian Healthcare System and Access to Treatment _________ 22

Government pensions, benefits and services for people with chronic health issues ______22

Pharmaceutical Benefits Scheme (PBS) ___22 Private health insurance _________________22 On the horizon: new treatments __________23

Chapter Eight: Treatments _______________________ 25 Analgesics _____________________________25 Glucocorticoids (cortisone) _______________25 NSAIDs ________________________________26 Disease-modifying antirheumatic drug (DMARD) therapy _______________________26

Biosimilars _____________________________27 Which medications are right for me? ______28 Monitoring of DMARD therapy ____________28 PBS qualifications for access to biologics, biosimilars and JAK inhibitors ____________29 RA medications and pregnancy___________30 RA medications and infection and cancer risks _30 RA medications and vaccines ____________33 RA medications and alcohol _____________34 RA medications and travel _______________34 Medication information resources _________35

Chapter Nine: How to Include Holistic Wellness in Your RA Treatment Plan ________ 36

Exercise _______________________________36 Diet and nutrition _______________________38 Complementary therapies _______________40

Chapter Ten: Advocacy and Raising Awareness About Living with RA ______________ 41

How to talk to your family and friends _____41 How to talk to your employer _____________42 Making the most of democracy ___________43

Chapter Eleven: About the Authors ________________ 44

The CreakyJoints Australia Patient Council _44 CreakyJoints Australia team ______________44

Global Healthy Living Foundation/ CreakyJoints Head Office advisors ________44

Australian medical advisors ______________45

Glossary __________________________ 46

Table of Contents

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Chapter One: CreakyJoints AustraliaAbout CreakyJoints AustraliaFounded in 2015, CreakyJoints Australia is an important source of information for Australian arthritis patients and their families. Our website helps people find reliable information, support, offers opportunities to become involved in advocacy and will also help link patients to patient-centred research opportunities as they become available.

Our mission is to empower Australians living with arthritis to put themselves at the centre of their own care by talking about their treatment preferences and working in partnership with their healthcare providers. CreakyJoints Australia connects arthritis patients with current and relevant disease-specific information and support across a spectrum of arthritis conditions (of which there are more than 100), using a diverse set of digital platforms. CreakyJoints Australia provides opportunities for members to proactively advocate for themselves and their families, and to participate in research that will broaden the global understanding of arthritis management.

CreakyJoints Australia is part of the US-based Global Healthy Living Foundation (GHLF), a nonprofit organisation whose mission is to improve the quality of life for people with chronic illness. Australia-wide programming and services, modelled after activities that have successfully helped hundreds of thousands of patients and families from all 50 US states (and Puerto Rico), are being adapted to address the unmet needs of the Australian community.

CreakyJoints Australia provides a positive community, totally free-of-charge to patients and their families, thanks to the generous support of our sponsors, corporate philanthropists, funding from the Patient-Centred Outcomes Research Institute and other private foundation support.

The CreakyJoints Australia Patient Council at its annual summit

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CreakyJoints Australia Patient CharterLiving with RA is challenging. Pain and fatigue can take a major toll on our wellbeing and our sense of self. Our journey with RA is made much harder when we have to fight for understanding — from our doctors, friends, colleagues and peers.

As fellow patients, we understand how you feel and can relate to the challenges you face. We are committed to helping ensure that all Australians have access to the information and support they need to receive the best possible care.

CreakyJoints Australia has developed a patient charter to clearly outline what we need from the healthcare system and the kind of treatment we deserve and expect. It outlines the guiding principles and deeply held beliefs that drive our community’s ongoing efforts to improve patient care for people living with arthritis, as well as their families and loved ones.

AS PATIENTS WE BELIEVE:

Our experience is at the heart of medicine; thus, we must be at the centre of all medical decision making.

We must play an active role in our own health, including decisions we make about food, exercise and other lifestyle choices.

We can empower ourselves and others to make our voices heard if we are provided with the right education and tools.

Care providers should inform us of all relevant treatment options, including non-medical ones to help us achieve the best health outcomes.

Access to care should not be limited.

We have the right to a second opinion.

Elected officials, drug manufacturers and all associated healthcare professionals must make it their goal to ensure patients are central to all decisions.

We must be treated with dignity, transparency and respect by everyone involved in the healthcare process.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Two: Rheumatoid Arthritis Overview

What is rheumatoid arthritis (RA)?Rheumatoid arthritis symptoms are caused by inflammation. That means your body’s immune system is releasing chemicals into your blood and joints that cause pain, swelling, stiffness and fatigue. Why? Because when you have RA, the normal signals that tell your immune system to spring into action — to protect your body from harm by viruses, bacteria, or injuries — are crossed. That’s called autoimmunity.

In an autoimmune disease like rheumatoid arthritis, your immune system mistakenly triggers inflammation and attacks your healthy joints and tissues. That’s why you have pain, swelling and other symptoms. Sometimes you feel like your immune system is constantly attacking your body; at other times symptoms will come and go. RA is different from osteoarthritis (OA), which is caused by mechanical wear and tear on joints, not an autoimmune process. However, there are over 100 different forms of arthritis and you can have more than one at the same time.

What causes rheumatoid arthritis?The exact cause of RA is still unknown. Genetics, hormones, previous infections or other factors may play a role in your risk of getting RA. Just because a family member, such as your mother, has RA doesn’t mean that you will get RA, or that your kids will get RA.

Ongoing research is exploring who is at higher risk for RA, looking at early clues that someone has RA even before they develop symptoms, and studying what could trigger disease in someone who is at higher risk. But having a higher risk doesn’t mean that you’ll necessarily get RA. Often, the first signs that you notice are pain, joint swelling, fatigue, flu-like illness or joint stiffness in the morning. RA may have been active or set in motion well before you had those symptoms.

How does rheumatoid arthritis affect the body?If left untreated, RA inflammation can do a lot of damage. The autoimmune chain reaction in RA causes the lining of the joint capsule, called the synovium,to become inflamed. Over time (sometimes in as little as three months), this inflammation can start to cause damage to the tissues around your joint, such as your cartilage or ligaments that hold the joint together. Eventually, your joints could become twisted, gnarled and harder to move.

Symptoms of RA can be different for each person. Common symptoms include:

• Joint pain or swelling, often in the same joint on both sides of your body.

• Morning joint stiffness that lasts more than 30 minutes or stiffness after sitting for a while.

• Fatigue, or feeling very tired most of the time.

• Feeling sick, almost like you have the flu.

• Achy muscles.

• Loss of your appetite, so you may lose weight without wanting to.

• Rheumatoid nodules, or swollen bumps under your skin around your joints.

• Painful reactions in your eyes or in the lining around your heart or lungs (less common than other symptoms).

• Cognitive dysfunction (“brain fog”) — a decrease in your ability to think, remember or concentrate to the point that it interferes with your daily functioning. The exact cause of this is unknown. It could be related to the inflammation, chronic pain or even lack of sleep.

RA can cause you to develop holes or “erosions” in the bones around your joints. These erosions are caused by inflamed tissue in the lining of the joints that can infiltrate parts of the bone. This is also called “erosive disease.” Early treatment may help prevent bone erosions, so it’s important to get a diagnosis as soon as you can.

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Your RA symptoms can change at any time due to factors such as treatment changes, lifestyle changes or stressful events. Sometimes they may change for no apparent reason. It is helpful to be aware of what your symptoms normally feel like, so you can respond to changes more quickly if needed. No two people are alike, so it is best not to compare your symptoms and reactions with others.

It is also important to control inflammation and your disease activity as much as you can to prevent these painful bone problems from happening or to slow them down.

How is rheumatoid arthritis diagnosed?There are signs of inflammation in your blood that your doctor can test. These tests are common and are used to help provide some of the information needed for your doctor to form a diagnosis. They will also be used to monitor how well your treatments are working. These are often called inflammatory markers. Not everyone’s markers match their disease activity. You may have pain and swelling while these markers look normal or vice versa.

The main tests you will become familiar with receiving regularly are ESR (erythrocyte sedimentation rate), CRP (C-reactive protein) and FBC (full blood count).

These tests are also used to monitor your condition and you’ll find more information about them in Chapter Six.

Your blood may also have biomarkers that show up as a positive result on tests. What are biomarkers? This term is short for “biological markers.” These are molecules in your body or blood that can be measured and tracked. Levels or measurements of these biomarkers can show if your body’s processes are healthy, or they can show signs of disease. Some biomarkers that are important in RA include autoantibodies. These are antibodies in your immune system that are designed to seek out and interact with your own body’s proteins.

Not everyone with RA tests positive for these biomarkers. You may hear your doctor refer to this as seronegative rheumatoid arthritis. But if you do test positive for these biomarkers, they may remain in your blood even if your RA goes into remission after treatment:

Rheumatoid factor (RF) and anti-cyclic citrullinated peptide proteins (Anti-CCP) are both biomarkers that can be measured in your blood tests. Your rheumatologist will take these measurements into account when you get a check-up. They are just clues to help identify how potentially severe your disease is in your body. They don’t tell the same story in every person who has RA, and they don’t tell the whole story.

Rheumatoid factor can attack healthy tissue by mistake. Some healthy people can have higher levels of RF in their blood, and some people with RA may have normal RF levels, so it’s not always a sure sign of inflammation or an RA diagnosis. Merely having an “RF-positive” test doesn’t mean you have RA, and having a normal RF level (or “negative” result) doesn’t mean you do not have RA. It’s just one sign to consider along with others.

Anti-CCP is an autoantibody. It seeks out “citrullinated” proteins in your body. They’re also called ACPAs. Citrullinated proteins are involved in the process of inflammation in your body. So, if your anti-CCP levels are higher than the normal or acceptable level, it’s one sign that you may have RA — although not a sure sign. However, testing positive for anti-CCP is a more accurate, reliable clue that you have RA or active inflammation in your body than RF. A positive anti-CCP test result is about 97 per cent reliable as a measurement to show that you have RA.

In addition to these tests, different doctors use different scoring systems to measure your disease activity to help with diagnosis and to check your progress, such as the:

• Disease activity score (DAS): based on a 28-joint count (DAS28).

• American College of Rheumatology (ACR) 20/50/70 score: based on a 20 per cent, 50 per cent or 70 per cent improvement in your RA.

• Clinical disease activity index (CDAI).

• Simplified disease activity index (SDAI).

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These scores may look at different test results or physical exam results, but they’re all based on specific measures. Using these scoring methods can be helpful to your doctor in determining a diagnosis and if you are responding to treatment.

Based on your pathology and image results, scoring from questionnaires and physical exams, your rheumatologist will be able to make a diagnosis as well as tell you if your disease is in remission or in a low, moderate or high/severe activity state, or somewhere in between. Your disease activity level is based on a composite of many different scores. It is not just a matter of reaching a certain test result on one part of the score, and your disease activity level or “score” may not always match up with how you feel day to day.

The benefit of early diagnosisEarly RA is described as rheumatoid arthritis that you’ve had for about six months or less. It’s important to see a rheumatologist as early as you can — as soon as you notice symptoms if possible — so you can start treatment. Research has proven that the first two years of developing RA is the time where the most joint damage can occur due to high levels of disease activity. Therefore, it is critical for diagnosis and treatment to take place as early as possible. However, some people may have had RA for many years before being diagnosed, so they may have more significant joint damage and other symptoms.

How is rheumatoid arthritis treated?Your treatment plan is designed to control inflammation. Your plan will likely include appropriate RA medication and other steps such as an exercise regime. We will discuss these in detail later in this guide.

Australian rheumatologists use an approach called “treat to target” when deciding how to manage your disease. This is a process through which the medication therapy is adjusted until the therapeutic goal is achieved. For example, if your disease activity level shows that your condition is currently severe, your therapeutic target may be to reduce your activity level to moderate or low, rather than full remission.

Low disease activity, or remission, is the ultimate goal for your RA treatment plan. The various scoring methods look at your lab test results, a count of your tender or swollen joints, and how well you’re able to function on a daily basis. These help your doctor determine if you are in a low disease or remission state. We’ll talk more about remission later. It doesn’t mean you should stop taking your RA medications, but you may be able to take lower dosages or take fewer medications after talking with your doctor.

Your treatment plan will depend on your disease activity score and other factors such as:

• How long you have had RA and your level of joint or organ damage.

• Other diseases you have, for example, liver or lung disease.

• Whether some medications may cause you some harm. You and your treating doctor will need to weigh the risks of taking certain medications versus the risks of not taking them.

• Your personal preferences, such as medications that are taken as tablets, self-injectables or infusions.

Based on these factors, your doctor and you may choose to start you on just one medication, which is called monotherapy, or a combination of two or three medications, called combination therapy, double therapy or triple therapy.

Side effects are changes that can occur in our bodies as the result of using a particular medication or device. Side effects can be mild or severe and can vary greatly from person to person. Most patients experience no, or very few, side effects from medication. If side effects do occur, tell your treating doctor as they may be able to help you manage them or offer you other medications that suit you better.

It is important to note that choosing not to treat your condition with evidence-based methods also has a serious and likely side effect — a very high risk of permanent joint damage, chronic pain and decreased function. This is because disease-modifying antirheumatic drugs (DMARDs) are the only proven way to slow or halt the progression and ease the symptoms of RA. Other treatments may improve the symptoms, but they will not alter disease progression.

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A comorbidity is a condition you have at the same time as your primary condition. Some people with RA have one or more comorbidities, such as chronic respiratory conditions, diabetes, heart disease and stroke. This might be a result of the inflammation in RA, which is not well controlled, or because RA can lead to decreased mobility, which can increase the risk of these other health problems.

Contraindications are situations when you should avoid taking a certain medication for health reasons. For example, some DMARD therapies (a type of medication that slows down the progression of your disease) should be avoided if you:

• Are pregnant or planning to conceive.

• Have alcoholism.

• Have active hepatitis A, B, or C.

• Have alcoholic liver disease or another severe chronic liver disease.

• Have previously been treated for lymphoproliferative disorder, or cancer of any type.

• Have immunodeficiency syndromes, such as HIV/AIDS (some patients with HIV can take certain RA medications under careful monitoring), in which your immune system is not working properly.

• Have pre-existing blood dyscrasias (for example, bone marrow hypoplasia, leukopenia, thrombocytopenia or significant anaemia).

You’ll find more information about rheumatoid arthritis treatments in Chapters Eight and Nine.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Three: You Have RA: Now What?When you have rheumatoid arthritis (RA) it is essential you get the right treatments to improve your symptoms and to protect your joints and organs from possible damage.

Working with your rheumatologist, your GP, and other healthcare professionals is important to develop a treatment plan that works for you. The best treatment combination can take some time to work out, as certain medicines or therapies may or may not work for you. In most cases, there isn’t just one tablet you can take that will take care of all your symptoms. A combination of medicines, diet, exercise and other lifestyle changes are generally all required to achieve optimal results, and you can discuss all of these with your treating team. As you progress through your journey you may find that what once worked for you no longer does. This is when you need to discuss alternatives with your doctors.

Ultimately, you are your best advocate. It is important to empower yourself to support your overall health through a healthy lifestyle and make sure your voice is heard with all your doctors so the best plan can be put in place. You can also seek a second opinion if you feel like you are not being heard.

You’ll find more information about rheumatoid arthritis treatments in Chapters Eight and Nine.

Your health, your planIt is also important to think about treatments in terms of outcomes that are important to you. And, remember, these may change over time.

Ask yourself:

• What are the goals of my treatment plan for RA?

• What are my goals for the next five years, and how might treatment affect those? Pregnancy? Travel? Work?

• What am I scared of, in terms of my health, and why?

• What frustrates me with my health and what else can I do to manage my symptoms each day?

• What kind of help and support is out there for people like me with RA and what additional assistance might I benefit from?

Choosing your healthcare teamYour team will generally be made up of a number of individuals including medical professionals, allied health practitioners and possibly your family and friends. The person at the centre of your team is YOU. You get to choose who is on your team and what role they will play in supporting you.

Why do I need a team?One of the realities of having arthritis or other chronic health conditions is that you will most likely need to see a range of healthcare professionals over a long period of time.

You could allow your GP or someone else to tell you who to see and when to see them. However, actively choosing your own team will help you gain a better understanding of your condition, assess which treatments are right for you and help you manage your health more effectively. It also helps you to have a sense of control over your condition rather than the other way around.

Who can I have on my team?If you have a partner, carer or someone who helps you out with your day-to-day needs then they will certainly be on your team. They will give you the emotional support you will need to help manage the bad days as well as the good ones. Remember to tell the members of your team about all the medications you are taking, including any supplements and treatments for other conditions.

Your immediate teamThe next key person is normally your General Practitioner (GP). You need one that you have a good relationship with as they will likely be the team member you see the most often. They will refer you to appropriate specialists and be a central point of contact for most team members.

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A rheumatologist will assess and help you manage conditions that affect your joints and the soft tissue that surrounds them. Their expertise covers hundreds of arthritic and musculoskeletal conditions.

Some often overlooked but very useful members of your support team could be your rheumatologist’s personal assistant, nurse practitioners, pathology nurses or health clinic nurses. Nurses are usually qualified to discuss medications with you and can answer many questions you would normally ask your doctor.

Your local pharmacist should be an essential part of your team. They can give you advice on your medications, answer questions about general medical concerns, keep track of your prescriptions and much more.

Allied health professionalsMany people include an exercise physiologist or physiotherapist on their team to learn ways to move that strengthen the body, reduce stress on the joints and help to relieve pain.

An occupational therapist can help by finding ways to help you participate in the “occupations” of your daily life. This could be at your workplace, but it could also be any task or activity you regularly engage in such as shopping, driving or socialising. They may suggest modifications to your physical environment or changing the activity to help support your general health and wellbeing.

Occupational therapists and physiotherapists can undergo further training to become certified hand therapists. Hand therapists can treat many injuries and conditions of the arm, from hand to shoulder, including osteoarthritis and rheumatoid arthritis.

A dietitian can show you how to establish a nutritious menu plan that works with, and not against, your conditions and medications. Making even small changes to your diet can result in improved vitality.

To help your body function at its optimum level you could also include a podiatrist, chiropractor or osteopath in your team.

Other health professionalsYour team could include a number of other health professionals depending on your needs.

You may want a psychologist or psychiatrist on your team. Both can treat a wide range of mental health issues using approaches like cognitive behaviour therapy. Both have studied extensively and have different areas of expertise, but a simple way to distinguish them is that a psychiatrist can prescribe medicine.

There is strong evidence to show that chronic health issues can have a noticeable impact on mental health and vice versa. Therefore, properly treating your mental health may also help to improve your arthritis symptoms, too. Over a series of appointments, your psychologist or psychiatrist can help you create coping tools to handle all the stressful issues that come with having chronic pain and invisible illnesses.

Musculoskeletal practitioners are existing medical or allied health practitioners who have undergone further training in musculoskeletal medicine. They deal with pain and dysfunction in the muscles, joints, nerves and associated areas of the body. Treatments may include manipulation, exercise, injection therapies and more. Practitioners work closely with GPs, rheumatologists, psychologists and other health professionals.

Arthritis and other related conditions could potentially affect you to the point where you need surgery. There are a number of specialist surgeons who will work with you to help you achieve the best possible outcome.

Rheumatoid arthritis and some medications used to treat it can have an effect on blood health. Your doctor can monitor this through regular blood tests, but, in some cases, they may refer you to a haematologist.

Team members from the wider communityRA and some of its treatments can have an effect on your oral health, so it is important to see a dentist regularly.

Some autoimmune conditions and medications can affect the health of your eyes. It is a good idea to have regular check-ups with your optometrist, so they can detect and manage any issues as early as possible. More advanced eye issues may require an ophthalmologist.

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Peer support groups are full of people going through similar challenges as you. The members understand things like fatigue and brain fog, disclosing your health issues at work and coping with chronic pain while trying to maintain a ‘normal’ life. You can share your experiences and ask questions in a friendly and non-judgemental environment.

You’ll find more information about peer support groups in Australia on our CreakyJoints Australia website.

How do I decide who to include in my team?Your GP can certainly help you choose your main team members. They will consider your needs and circumstances and refer you to the appropriate specialists. You can also ask people you trust such as a family member, friend or someone in your support group for their recommendations.

Choosing the right person to be on your team is a bit like hiring a new employee. First impressions and gut feelings do count. Sometimes you connect with somebody instantly and other times your instinct may tell you to steer clear.

It’s a good idea to create a shortlist of practitioners you are considering for various roles in your team. Check their credentials and see if they are members of professional associations and if they have experience treating people with RA.

What if I don’t like them or agree with their opinion?If your team is going to function effectively, each member needs to be someone you trust, who listens to you, takes you seriously and makes decisions with you — and not for you. It is important that they are all aware of each other and are willing to work with each other.

If you don’t feel comfortable with that person or you don’t agree with their approach you are perfectly entitled to seek a second opinion. You don’t have to use a specialist that your GP referred you to if you don’t want to. You also don’t have to stick to the same GP if you feel they are not meeting your healthcare needs.

It is quite acceptable to book an initial appointment with a different practitioner to give them a trial run. You are also entitled to have your records transferred to your new practitioner. Don’t be embarrassed about it; it is a common practice and they are unlikely to take it personally.

Where do I find my team members?Your GP will have lists of many other healthcare providers in your area.

Organisations such as the Australian Rheumatology Association, Arthritis Australia, Musculoskeletal Australia and other peak health bodies have a list of health service providers in many areas. You can browse their websites or call their support phone lines.

There are many online directories catering to different fields of healthcare. Often you simply need to enter your postcode and the site will automatically generate a list of service providers near you.

The people in your peer support groups can give personal recommendations for a range of practitioners. Keep in mind that we are all different and you may not like the person that your friend suggests.

It is important to disclose all information regarding medications diet, and lifestyle choices to your treating doctor. In order to make the best treatment recommendation, they have to consider a lot of information specific to you. Leaving out an important detail, like a medication, could lead to adverse side effects regarding certain treatments.

Never hesitate to ask your rheumatologist questions you may have about your treatment or RA in general. They are there to help.

You’ll find information on how to access and pay for various health services in Australia in Chapter Seven of this guide.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Your first appointment with a rheumatologist

Things to do before your first appointment• Go through this guide and start writing a list of your questions. Remember to take your list to your

appointment.

• Take a pen and paper, or your phone, so you can make notes and run back over your notes with your doctor before the end of your appointment. Ensure you clearly understand what you need to do and why. Doctors like patients who are prepared as it makes the best use of the available time and ensures you get to the heart of any issues without forgetting them. Consider asking a partner, family member or friend to accompany you to the appointment to help take notes, since you’ll be processing a lot of information all at once.

• Take any X-rays you may have had done to your appointment as these can help with diagnosis. If you only have the printed reports, these may still help.

Things to discuss during your first appointment• Ask how disease progress will be measured and how you can help keep track of your symptoms

and experiences.

• Are there any types of exercises or complementary treatments your doctor would recommend for you?

• Are there any types of exercises or complementary treatments your doctor would not recommend for you? If so, why and for how long?

• Are there any therapies you are currently undertaking or would like to try that you’d like to discuss?

• If your doctor doesn’t have an answer to your question(s), ask if he or she can recommend someone who might, such as a physiotherapist, counsellor or radiologist.

• Ask about support services in your community.

“ It felt great to finally have an answer. For years I’d been sore and exhausted, but I didn’t know why. GP after GP appointment meant I didn’t have any answers and I felt like I was just dismissed as a hypochondriac. Finally, I found a doctor who was taking my symptoms seriously and who wanted to help me feel better.”

Questions to ask about treatmentsWhile your doctor prescribes your medications, you are a full partner in any decisions about your treatment options. The best way to be an active participant in your treatment is to be informed. Our patient guidelines offer some information but consider asking your doctor questions such as:

• What are the short and long-term goals of recommended treatments?

• How do the medications work?

• Is there an optimal time to take my medication? What happens if I miss a dose? Should I take it with or without food?

• What are the common side effects?

• What are the longer-term risks?

• Do these medications interact with any other medications? Do I need to be careful if I’m taking any over-the-counter (OTC) medications?

• What should I do if I find the medication is making me feel significantly worse?

• Should I take my medication if I get a cold? The flu? Have surgery? Go to the dentist?

• What does this medication mean for fertility and planning a family?

• What might happen if I don’t treat my disease?

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Other therapiesComplementary and alternative therapies can also have positive impacts on RA. Alongside taking medications as prescribed, many RA patients recommend:

• Exercise, including yoga and aerobic workouts like walking or swimming.

• Diet changes to stay at a healthy weight and protect your heart and joints.

• Integrative medicine and natural therapies, including certain herbs and supplements.

See Chapter Nine for more information about complementary and alternative therapies.

Advocate for yourself – and everyone else on this journeyThe most important part of your treatment plan is you. You’re the one living with RA every day.

By gaining better knowledge you can feel more in control of your journey with RA, which can lead to a better quality of life and greater peace of mind. A better understanding of RA can also increase your health literacy ensuring you get the best possible treatment.

It’s important to speak up and ask questions of your rheumatologist and everyone else who makes decisions affecting your care and wellbeing. Your GP, your pharmacist, your employer and your local Members of Parliament all have a role in ensuring you get the best quality of care. It’s time to raise your voice and reach out to ensure the best care for yourself, and thousands of others on this journey.

See Chapter Ten for more information about how to raise awareness with those around you.

The goal – remission

What it means to be in remissionIf your treating doctor tells you that your RA is in remission… first of all, congratulations! That’s the goal of your RA treatment plan.

What is remission? It means that your disease activity is below a certain level. This is based on several pieces of information that your doctor will collect from you, including:

• Answers to a questionnaire about your levels of pain, activity and mobility.

• Examining 28 of your joints to see how tender, sore or stiff they are.

• Lab tests, like blood tests, that measure levels of inflammation in your body — things like C-reactive protein (CRP).

Your doctor will look at all of your test results to determine your disease activity level. There is no one “correct” tool to say if you’re in remission or not. Just because you have a certain test result doesn’t mean that your RA isn’t still active. And just because you feel great and can do tasks you couldn’t do before you started your treatments — like wash the car or weed the garden — doesn’t mean that your inflammation isn’t still a problem.

What happens when you hit that goal and reach remission?The general recommendation for people in remission is that your doctor tapers your medication dosage down to a lower level, but not take you off RA treatment altogether. “Tapering” is carefully defined in RA as “Scaling back therapy one medication at a time (reducing dose or dosing frequency).” How soon and how quickly you begin tapering is different for each individual. It may take months or even years before tapering is right for you.

So, your doctor may reduce your dose of a particular RA medication or cut back on how many times you take it per week or month. If you take more than one medication, your doctor can then taper the others one at a time.

Tapering can have a lot of benefits for you. You may not have to take as many tablets, shots or infusions as before. You may not have to fill as many prescriptions. You may not have as many side effects from your treatments due to lower dosages.

At the doctorsSpeak up at each doctor’s appointment. Bring a notebook with you or use your smartphone’s Notes app to write down information about your treatments, as well as your questions and concerns.

Write down questions or concerns ahead of time so you don’t forget them at your appointments.

Always ask about out-of-pocket costs of potential treatments, as well as any possible side effects.

Tell your doctor about any side effects or concerns regarding your treatments. Don’t tell yourself that you just have to put up with it or downplay these effects. Your doctor may be able to make changes to your treatment plan to help ease your side effects.

Look for patient assistance programs. Ask your rheumatologist for more information, check the leaflet inside your medication pack or search online to see if the manufacturer of your medication has a patient support program in Australia.

Ask your doctor about clinical trials and new or existing RA treatments that may be available for you.

Treat your emotional and mental health symptoms as seriously as your physical RA symptoms. Tell your rheumatologist and nurses if you’re anxious, depressed, feeling blue, not sleeping at night or not able to get through the day because you’re worried about RA. Remember that you are not alone, and support is available.

Connect with othersConnect with other arthritis patients in local or national support groups and online networks to share experiences and discover what others are doing within the arthritis community.

Become an advocateBe an advocate to make sure your opinions and concerns are always heard by the people who create healthcare laws.

Join other arthritis patients in local or national advocacy groups like CreakyJoints Australia.

Add your name to relevant online petitions with a simple click. You will make every advocacy effort stronger by joining with others. CreakyJoints Australia runs regular online polls and shares links to other arthritis-related surveys you can participate in.

Use the power of technology! Follow our social media channels and lend your voice to arthritis advocacy or healthcare issues when the time is right for you. You may also want to attend live arthritis advocacy events when you can. Join online conversations by commenting on any of our arthritis advocacy, education or healthcare articles on theCreakyJoints Australia website or Instagram page.

You can also connect with other arthritis patients in the CreakyJoints global community on Facebook or Twitter.

Share your voice with the wider community. Talk to other arthritis advocacy groups looking for patient input on important healthcare issues. Offer your thoughts on their Facebook pages or other social media channels. Remember that nothing is private online so think about what you want others to know. You don’t always have to give your name, but when it’s appropriate, let others — including elected officials in your state government and at the national level — know that you are a constituent, you vote, and you care about these issues! Choose email, mail, postcards, social media, phone calls or in-person meetings — whatever works best for you.

Stay informed and up to date. Australia’s healthcare landscape is changing all the time. For example, the National Disability Insurance Scheme (NDIS) and My Health Record are recent initiatives that are now operational across the country. These can be beneficial for many people with RA and other chronic health conditions. Find out more about the Australian healthcare system in Chapter Seven.

When you register for free membership with CreakyJoints Australia, you’ll receive our newsletter which includes links to the latest articles about arthritis and the Australian healthcare scene on our website.

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However, in most cases, you won’t stop taking arthritis medications altogether. Because if you do, your inflammation could come back. As you taper your treatments, your doctor will help you monitor your disease activity to make sure the new approach is working for you.

Any decision about your treatment plan once you’re in remission should be made with your values and preferences in mind. You and your doctor should talk over all of your options, so you can try to stay in remission and cut down on your risk of a flare.

“ From day one, my rheumatologist told me he was going to treat my condition aggressively and he wanted to get me onto biologics within six months. I’m so glad — and so lucky — he took that approach. My current meds work really well for me at the moment. I’m in remission and — on most days at least — I feel pretty good. I still get tired and still deal with some joint pain. But I’m also able to do most things I could before I got sick. I know I’m so incredibly lucky to have found a medication combination that works so well for me.”

RAISE YOUR VOICE: GET ACTIVE, ADVOCATE AND TAKE CHARGE OF YOUR HEALTHCARE!

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Chapter Four: Dealing with Your DiagnosisPeople deal with a diagnosis differently. Some people feel relieved to finally feel heard and believed by medical professionals and want to start treatment as soon as possible. Others feel overwhelmed by the news, the treatment options, the medications and the potential side effects so they withdraw. They may find themselves defending their diagnosis when others around them don’t understand it. Many people also experience grief for their life before diagnosis or before they got sick. This is a normal and understandable reaction.

Just about everyone does an internet deep-dive to learn what their possible future may be. That’s one of the reasons we, as patients, have had input into these patient guidelines. Deep dark places online will show you people at their best — and worst. It can be hard to find reliable information that you relate to. These patient guidelines help fill that gap.

Remember you aren’t lazy, and you aren’t crazy.

Chances are you’ve been feeling exhausted and sore for a long time. How many times have you been to your GP to talk about feeling so tired you could just sleep for a week? How many times have you had an ache in one joint or one area that you talked to a healthcare professional about, but nothing ever came of it? How many times did you dismiss your instincts that something was really wrong, and convinced yourself instead that you must be tired because it’s been a hard week at work or because you tried twice to exercise last week and must be more out of shape than you thought?

This helps explain why it can take years for people with autoimmune arthritis to be diagnosed. Awareness of the symptoms, impact and treatment of autoimmune arthritis among the general public is low, and that slows down diagnosis. Other factors include the similarities in symptoms across the autoimmune arthritis family, so pinpointing a specific disease can be tricky.

So, back to the good news. You have a diagnosis, which means you’ve got access to treatment.

The not so good news: You may be managing a chronic illness for many years to come, or until we find a cure. However, having RA does not automatically mean that life will be downhill from here.

Being diagnosed with a chronic disease like RA can open up a minefield of emotions. You have to deal with physical pain that leads to emotional pain because you’re unable to go about your daily life or normal activities. While these temporary feelings of sadness or frustration are expected, if they last for more than a few weeks they may progress into depression or anxiety and require treatment. Although these are separate conditions, they can occur at the same time and share some symptoms. Symptoms of depression and anxiety include:

• Feelings of sadness or irritation.

• Emptiness, hopelessness, or worthlessness.

• Fatigue or decreased energy.

• Trouble concentrating, remembering and making decisions.

• Having irregular sleep patterns, either from not being able to sleep or sleeping too much.

• Changes in your diet, such as either eating too much or not wanting to eat at all.

• Thoughts of death or suicide (or suicide attempts).

• Aches, pains, cramps, headaches or digestive problems without a clear physical cause that don’t get better with treatment.

People with chronic medical conditions have higher rates of depression for many reasons, including the stress of treatment, the physical pain of the disease, and the interruption of a normal life. Although depression is common, it is NOT normal. What’s important to remember is that you are not alone. Your depression can be treated. Talk to your doctor about seeing a psychiatrist, starting different types of therapy or taking medication to help ease your depression.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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“ I was 30, about to turn 31, when I was diagnosed. I’d been married for less than a year. During my first appointment, my first rheumatologist told me I’d never do any exercise that caused my muscles to strain. I loved going to the gym and exercising, and that news just broke my mind. I couldn’t stop thinking about how unfair it was that I had this disease and how many things I wouldn’t be able to do because of RA. I felt like my husband had gotten a crap deal — a disabled wife who couldn’t even brush her own hair. For at least a year after I was diagnosed, I felt like I was grieving for the person I was and the life I had before I was diagnosed with RA. In hindsight, I wish I had talked to someone about it to help me cope with that.”

You can also take steps to develop better resilience — the ability to learn from your challenges and stressors and rebound from them. This can help you keep up your mental and physical strength in the face of pain and anger due to your disease.

All of us have some natural resilience, but here are some ways to boost yours:

1. Focus on the positives: Studies have shown that the more hopeful you are, the more resilient you will be. Look at your experiences in a new way. Be aware of the negatives that RA brings to your life but focus on the positives too. Stay optimistic about your treatment plan working well so you can get back to a normal, active life that you enjoy. Be grateful for the things in your life that make you feel good. Focus on the people and activities that make you happy. Gratitude can make you feel more connected to life.

2. Learn from experience: Keep track of how different treatments impact you and what works best for your body. This will help you understand how to manage your disease, making you stronger and more confident about your future.

3. Expand your knowledge: Read up on RA and how to manage it. The more you know about your condition, the more power you will have to control its effect on your life and wellbeing.

4. Stay active in life: Make time to find and do things that you enjoy. Find new activities that are easy to do, like reading, watching movies, taking gentle walks or visiting friends.

5. Exercise: Movement is not just great for your joints and muscles; it’s also known to improve your mood and decrease anxiety. (See Chapter Nine for tips on exercising with arthritis.)

Reaching out for supportHundreds of thousands of Australians, of all ages and backgrounds, are on the same journey as you. Our collective lived experience has enormous value, particularly when we pool that experience and use it to support others and guide our collective treatment journeys.

Most of us turn to our loved ones for help and support during hard times and many of you will likely have had support of this kind. Your diagnosis and all the information that comes with it can be as overwhelming for your loved ones as it is for you. These patient guidelines are a great resource to share with others to explain what you are going through.

Support groups are a valuable way for people living with arthritis or fibromyalgia to share experiences about living with these conditions and to share positive coping tips.

Visit the CreakyJoints Australia website to find a local support group or contact your state or national arthritis organisation.

The journey ahead may seem daunting as you try to get on top of your condition. There are likely to be a number of pitfalls and challenges to face. It can feel like you’ve lost control of your life, that your choices are limited and that your decisions are now in the hands of others.

That’s not true. Yes, you have to manage a chronic illness. Yes, that probably means taking medication, managing pain and spending more time in doctors’ offices than you’d like. However, there are other people on a very similar journey to you as well as health professionals who can all offer advice and support. Remember that although you have arthritis, it doesn’t have you.

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Chapter Five: RA Treatment GuidelinesSo how does your rheumatologist or other health professional come up with your treatment plan?

The primary way is to follow the current rheumatoid arthritis treatment guidelines. The most globally accepted guidelines are the RA Treatment Guidelines, published by the American College of Rheumatology (ACR), and the Recommendations for the Treatment of Rheumatoid Arthritis, published by the European League Against Rheumatism (EULAR).

Treatment guidelines are usually written and funded by doctors’ associations — what we call the “professional medical societies.” The ACR is the world’s largest society of rheumatologists and rheumatology health professionals. Every few years, treatment guidelines for major types of arthritis, including RA, are updated. Why? So new, important research can be considered by the best arthritis experts, and then they can all agree on how to turn that information into up-to-date recommendations for your arthritis treatment.

There are also a number of Australian guidelines that treating doctors can refer to alongside the ACR and EULAR guidelines. These are published by various organisations with different levels of frequency. There is currently no up-to-date, nationally recognised set of Australian guidelines for RA.

You can read many published treatment guidelines online. However, if you find them a little hard to understand, that’s because treatment guidelines are written for doctors and other healthcare professionals.

Leading experts on arthritis create the treatment guidelines as a team. This team or panel includes rheumatologists, rheumatology health professionals and patients like you. They come up with a final report full of recommendations based on recent scientific information and patient feedback about how best to treat RA. They’re meant to help your doctor make decisions about your prescriptions and other approaches to disease management. They recommend what treatments to use first in most people with RA, and then other options if the first try doesn’t work well enough to lower your disease activity.

It’s hard to say how well you may or may not respond to a particular medication. New research has begun to produce valuable insight into biomarkers related to RA and how each person may respond to different RA treatments. Biomarkers may help give your doctor more information on your particular disease state and how to best treat it. Remember, treatment guidelines are just recommendations. Each person with RA is different and there is no “one size fits all” when it comes to treating RA.

Your doctor may use treatment guidelines to decide if or when it is appropriate for you to switch treatments — such as if your first treatment doesn’t work well enough to control your inflammation and lower your disease activity score. Treatment guidelines are recommendations — based on the best information on RA treatments available and updated regularly (every couple of years or so).

The recommendations in the treatment guidelines are often used by people who make decisions about how RA is treated, including:

• Doctors — like your rheumatologist or GP.

• Nurses or nurse practitioners.

• Pharmacists who dispense medications, including at mail-order or compounding pharmacies.

• Insurance companies who pay for hospital care.

• Those who vote on medication and healthcare laws.

All recommendations for how to treat different types of RA patients are based on evidence. That means the experts who write the treatment guidelines take these important steps:

• Gather research done at the world’s top hospitals, universities and labs by the top experts in arthritis, including current studies and data published in leading medical journals around the world.

• Read, discuss and debate all of the evidence on RA treatments in these studies.

• Review everything from medication side effects, interactions, risks of using treatments in patients with other diseases, ease of using the medication in real life and even availability and cost.

• Develop with recommendations based on this evidence on how to best treat people with RA.

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While treatment guidelines are valuable for health professionals, they don’t really focus on what it’s like to have RA. That’s why we’ve created this document, Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis in Australia, for you. Our guidelines have been written by patients just like you and are designed for you to read and understand easily. You can use them when you:

• Talk to your rheumatologist or other health professionals about your treatment plan.

• Meet with your local Member of Parliament or the Health Minister in your state.

You can also use these guidelines to help you develop an active voice in the conversation about your health and your RA treatment options. Too often, people who have RA aren’t a part of conversations about our care. You may feel like your doctor just hands you a prescription to fill, but you don’t get to really talk about your treatment options — or what may happen once you are taking them. You may feel like the authorities decide which medications are best for you instead of getting your input on what really works and what’s most “cost-effective.”

RAISE YOUR VOICE:Don’t wait until side effects become too much to bear to speak up about your treatments. Call, email or speak to your doctor’s office right away to see if you can change your dose, take your medications with food to ease nausea, switch medications or take an additional medication to ease these effects.

Don’t skip a dose of your medicine or stop taking it before you let your doctor know. For your medications to work effectively it’s important for you to adhere to the timing and dosage instructions given to you by your treating doctor. That can mean things like swallowing a dose of tablets with a full glass of water or taking your medicine before you eat a meal. Follow all the instructions on your prescription and ask your doctor or pharmacist to explain anything you don’t understand.

You can find more information about many RA medications in the education section of the CreakyJoints Australia website.

We hope this guide will help you feel more confident about asking questions and speaking up about your treatment plan.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Six: Monitoring Your RAHow often should I see my doctor for blood tests? Monitoring with blood tests is recommended to make sure the treatment that you and your doctor select is both safe and effective. Your doctor may recommend frequent blood tests while taking medications for RA, especially when you first start a new medication.

When you are being treated with most disease-modifying antirheumatic drugs (DMARDs), you’ll need to take frequent blood tests to monitor the medication’s effects. These blood tests often form part of your access requirements, so it is important to follow the instructions given to you about your blood test frequency. Once you’re established on a medication, however, your tests may become less frequent.

See Chapter Eight for more information about DMARDs.

What can blood tests detect?Blood tests are used to monitor your health during your treatment plan. The most common tests used for RA will monitor your inflammation levels, liver function, kidney function and your blood counts.

Erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) are the standard measures of inflammation in rheumatoid arthritis and many other conditions. They can usually detect that there is inflammation somewhere in the body, but they can’t indicate where it is.

ESR is a measure of the rate of fall (sedimentation) of erythrocytes (red blood cells) in a tall, thin test tube of your blood. A higher ESR measurement indicates a higher level of inflammation.

One of the first indicators that there is inflammation or infection somewhere in the body is a high CRP level. CRP is a protein produced in the liver and secreted into the bloodstream. Its concentration increases rapidly within hours and drops once the inflammation or infection has passed, so it is a good way of measuring if a treatment has worked.

Liver function tests (LFTs) are routinely used to screen for, detect, evaluate and monitor liver inflammation and damage. As some RA medications can affect liver function, your doctor may recommend you have your liver function tested regularly to see if there is a change in its status over time.

Liver toxicity is measured with transaminase (AST/ALT) levels. A transaminase is a type of liver enzyme. Your liver can make and release transaminases when it’s injured or weakened in some way. Higher transaminase levels may indicate liver damage.

Creatinine and estimated glomerular filtration rate (eGFR) levels are used to assess your kidney function. Even if the RA medication you are taking does not impact the kidney, it is important to keep track of its function because a change in kidney function can affect the level of your RA medicine in your blood.

Lymphocytes are a type of white blood cell produced in the bone marrow. White blood cells are an important part of your immune system. Lymphocyte counts are used to determine whether the medication is working, and to make sure that your immune system can still protect you from getting an infection. It is normal to see a temporary rise in the number of lymphocytes after an infection. If your lymphocyte count is too low, your doctor may sometimes change your dosage or medication.

Neutrophil/platelet counts. Neutrophils are the main white blood cells that fight infection. Your doctor may become concerned if these counts are too low. Platelets are also a part of your immune system but control your blood’s ability to clot. If you have too few, there is a risk of spontaneous or excessive bleeding.

Full blood count (FBC) testing is done to ensure that you have the right amount of red blood cells, white blood cells and platelets in your blood. Many medications used to treat RA can affect the bone marrow that makes these blood cells. Active disease may also impact the levels of these cells. It’s important to keep these different types of blood cells in balance for good overall health. If your FBC is abnormal, your doctor may change the dose or type of medication you are taking.

Sometimes it might be necessary to measure levels of a medication in your blood to check for toxicity or to make sure you are taking enough of the medication. This test will ensure the medication level in your blood is both effective and safe.

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There are also various imaging techniques that can monitor the effect of RA on your bones and joints. The most common and widely used technique is the X-ray. More recently, MRI (magnetic resonance imaging) and US (ultrasound) have been used as they can detect smaller changes in the joints earlier than an X-ray.

Patient-reported outcomes (PROs)While your blood tests and imaging scans are one way to track your disease activity or progress, your rheumatologist needs to know how well you are doing day to day. Things like how well you can use your joints for ordinary tasks, how you feel or how much energy you have in between appointments.

Outcomes are the results of your treatment. Patient-reported outcomes tell doctors how therapies may or may not improve your physical ability, symptoms or long-term progress. If your arthritis medication only improves your blood test results but not how you feel, is it really working for you? Only by sharing and tracking your outcomes can you really tell how well your treatment plan is working.

During your appointments, your rheumatologist may ask you to fill out simple questionnaires that measure your outcomes. It’s important for you to take a few minutes to respond to these questions as this information is very important to arthritis researchers as well as your rheumatologist. Your honest answers will help both you and your doctor track your health, how well your medications are working and what may need to be changed so your symptoms and wellbeing improve.

Patient-reported outcomes are also used by arthritis researchers as they study different therapies. The information you give about yourself plays an important role in shaping the future of arthritis treatment – hopefully, making treatments more effective and safer for everyone with this disease.

YOU are the most important player on the team when it comes to fighting your RA. Your experiences — how your therapies work, what side effects you have and what challenges you face day to day are vital pieces of data that can help your rheumatologist track and improve your therapy. Your input, when joined with information given by other patients just like you, can help to drive arthritis research in the right direction.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Seven: The Australian Healthcare System and Access to Treatment

Government pensions, benefits and services for people with chronic health issuesAustralians are fortunate to have access to a wide range of government health resources, including the National Disability Insurance Scheme, the Disability Support Pension and the Chronic Illness Management Plan. Sometimes, though, it can be hard to know what these are or how to access them.

You’ll find a list of the more common pensions, benefits and services available for those with chronic health issues such as arthritis in the support section of the CreakyJoints Australia website.

Pharmaceutical Benefits Scheme (PBS)The PBS Schedule lists all of the medicines available to be dispensed to patients at a Government-subsidised price. The Schedule is part of the wider Pharmaceutical Benefits Scheme managed by the Department of Health and administered by the Department of Human Services. The Scheme is available to all Australian residents who hold a current Medicare card.

This schedule is now online and updated monthly. This online searchable version contains:

• All of the medications listed on the PBS.

• Information on the conditions of use for the prescribing of PBS medicines.

• Detailed consumer information for medicines that have been prescribed by your doctor or dentist.

• What you can expect to pay for medicines.

Private health insuranceAustralia’s private health insurance system is quite different from that of other countries (such as the US), largely due to the broad scope of our Medicare system and other public health services. Health insurance is not connected to the workplace and Australians can choose their own provider and level of cover or choose not to have any private health insurance cover at all. Those that choose to not have any cover can rely solely on the public health system or partly or fully self-fund their own medical expenses.

Categories of private health insurance policies:

• Hospital cover

• Extras cover

• Combined hospital and extras cover

Each of these categories can be divided into basic, intermediate and top levels of cover, with premiums increasing accordingly. However, even with top cover, you may still be faced with high out-of-pocket expenses. Also, premium prices have been increasing to the point of being unaffordable for many Australians while the range of benefits has decreased in some instances.

Many also argue that the private health insurance system is far behind current best-practice in many areas. For example, there are many benefits for surgical interventions across the board, but comparatively less for health management programs and allied health services. A few government benefits, including the Chronic Disease Management (CDM) plan — which includes a GP Management Plan (GPMP) and a Team Care Arrangement (TCA) — partially cover these services, however, there is still a huge funding gap that has not yet been adequately addressed.

If you have a pre-existing condition before taking up private health insurance or before upgrading to a higher level of insurance cover, you may have to serve a minimum waiting period before your insurance provider (or health fund) will cover you for treatment of those conditions. Waiting periods can vary from three months to two years and will vary from provider to provider so it is important to check the fine print of your policy before signing up.

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Private hospital coverFor someone with a chronic health condition, such as rheumatoid arthritis, private hospital cover may help in ways such as:

• Partly or fully covering the cost of joint replacements or arthroscopic procedures.

• Reducing the waiting time for you to access elective surgery services.

• Allowing you to choose your own doctor while in hospital.

Private extras coverExtras cover provides some benefits towards a wide range of allied health services and health management services —usually up to a maximum value per year — with benefits varying significantly between providers. Common services covered include physiotherapy, chiropractic and podiatry.

Some may also cover gym memberships, naturopathy, remedial massage and other complementary health services.

You can find out more about private health insurance in Australia and compare providers and policies (obligation-free) at privatehealth.gov.au.

On the horizon: new treatmentsNew medications are constantly being developed to treat RA. Many are still in clinical trials. That means researchers are still testing them to see if they work well to control inflammation, arthritis symptoms and disease activity; to make sure they are safe for you to take and to make sure that they don’t have side effects that would outweigh the possible health benefits of the medication.

Clinical trialsClinical trials happen in hospitals, clinics, universities and even in your doctor’s office. Patients like you can take part in clinical trials if you meet the qualifications the researchers need to test the medication. There are four phases of clinical trials for a medication.

• Phase I Clinical Trial: A new medication is tested on a very small group of healthy patients to see if it’s safe, how much dosage of the medication is needed to work effectively and assess the side effects the medication may cause.

• Phase II Clinical Trial: The new medication is then tested on a larger group of patients with the target condition to make sure it is effective and safe.

• Phase III Clinical Trial: The medication is given to much larger groups of patients to further ensure it’s safe and effective in different situations, to look for side effects, to compare it to other medications that are available for the same condition and to gather any information that will be needed so the medication can be safely given.

The Therapeutic Goods Association (TGA) will then approve the medication for sale and use in Australia providing the phase III trial meets all efficacy and safety standards, the medication meets all quality manufacturing standards and other specific criteria are met. Not all medications have specific names when they complete phase III trials, but if they’re approved, each medication will have a new registered “brand” name, which is the name with the ® after it.

• Phase IV Clinical Trial: After the medication is approved and available for prescription, or on the market, more trials are done to test its long-term effectiveness, possible side effects or how it works in different patient groups.

PBS listingOnce a medicine has been TGA approved, the Pharmaceutical Benefits Advisory Committee (PBAC) will then approve it for subsidy through the PBS, provided the medicine is as good as, or better than, other medications used for the same condition with the same benefit to health and the medication is sold to the Australian Government at an acceptable price.

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RAISE YOUR VOICE:Patients just like you can take part in clinical trials of arthritis treatments, including medications not yet available to the public. These trials can help rheumatologists and drug manufacturers learn more about these treatments, including their effectiveness and possible side effects.

If you’re curious about clinical trials and whether they may be right for you, ask your rheumatologist. He or she may be conducting clinical trials or know of researchers looking for patients like you.

For a complete list of clinical trials in Australia, you can visit the Australian Government’s Australian Clinical Trials website or the Australian New Zealand Clinical Trials Registry (ANCTR). You can also see advertisements online and in major magazines and newspapers. For a list of clinical trials around the world, including eligibility information from the individual sponsors of the clinical trials, go to the NIH: US National Library of Medicine’s Clinical Trials website.

Ask about all the possible risks of any clinical trial before you proceed, and also ask about any costs you may have to take on to be in a trial, including travel or time away from work.

There are different kinds of medication studies and trials. An “open-label” trial or study is one where everyone who takes part knows the name of the medication being tested. In “single-blind” or “double-blind” trials, you may not know what medication you’re taking — or if the trial involves a placebo, which is an inactive tablet or “sugar tablet.”

Why are some trials open-label while others are blind? It’s to rule out any bias. Everyone who takes a certain treatment may have some feelings about it that may affect how they react or behave while they use it. If you know you’re taking a placebo, you may not bother to take each dose as prescribed, for example.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Eight: TreatmentsIn this section, we will discuss some of the commonly used medicines to treat rheumatoid arthritis. There is no magic pill to fix RA, as every patient responds to treatments differently. There are lots of options and combinations of medicines that can help you, so the trick is to be positive and patient while you discover what works best for you. It is important to work with your rheumatologist, tell them how you feel, and take your medicines as prescribed so they know what is or isn’t working.

Getting your RA under control quickly is the primary goal of your rheumatologist, so prescribing medicines will almost always be the first line of treatment for any patient. However, incorporating a healthy lifestyle with a balanced diet, appropriate exercise and caring for your mental health is also very important for patients with RA. Discuss these and other treatments you want to try with your rheumatologist, so you can develop a holistic approach to achieving optimum health.

Tell your rheumatologist (and all the other members of your healthcare team) about all the medications you are taking, including any supplements and treatments for other conditions, as this may affect your course of treatment.

RA treatments can include both medicinal and non-medicinal treatments. Medicinal treatments for RA can be broadly grouped into the following categories.

• Analgesics (pain killers)

• Corticosteroids

• Non-steroidal anti-inflammatories (NSAIDs)

• Disease modifying anti-rheumatic drugs (DMARDs)

Non-medicinal treatment includes diet and nutritional approaches, exercise and complementary therapies. These are discussed in more detail in Chapter Nine.

AnalgesicsAnalgesics are medications designed to reduce general pain levels. Some, such as paracetamol, are available over-the-counter, while stronger analgesics can only be issued by prescription. Many people use a combination of analgesics and other treatments to manage their RA.

Glucocorticoids (cortisone)Glucocorticoids are medicines used to reduce inflammation throughout the body. They may also be called cortisone, corticosteroids or even “steroids” for short. The most commonly prescribed glucocorticoid in Australia is prednisolone.

These medications can reduce RA symptoms, such as joint pain and swelling, very quickly. They’re often used as a “bridge therapy” while you’re waiting for your DMARD treatment to kick in. (We’ll describe these in detail below.) Sometimes, your DMARDs might not reduce your symptoms enough so your doctor may suggest you take a daily dose of steroids as well. They can also be used on their own if you have an occasional flare and need quick symptom relief.

Glucocorticoids are designed to act the same way as the hormones (natural steroids) made by your adrenal glands that sit on top of your kidneys. They can suppress inflammation and make your immune system less active.

As steroids can have serious side effects at high doses or when taken for an extended period of time, it’s best to take the lowest possible dose you need to ease your symptoms. You should never suddenly stop your steroids if you have been taking them for longer than two weeks unless you have tapered to a low enough dose as directed by your doctor.

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NSAIDsNonsteroidal anti-inflammatory drugs, or NSAIDs (pronounced “en-seds” or “en-sayeds”), are the most commonly used treatments for inflammation and pain. While some of your other RA medications are designed to slow or stop your inflammation at the source in your body’s immune system and, therefore, ease joint swelling and pain, you may also take NSAIDs to help manage your symptoms. They’re also used by many people with osteoarthritis for their joint pain (although osteoarthritis has different causes and effects than RA). NSAIDs are generally safe to use for minor flares of pain, but they do have possible side effects if you take them for a long time or in high doses.

The NSAIDs available over the counter generally have lower doses for mild pain. For stronger pain, there are higher doses of NSAIDs available by prescription. Some NSAIDs are only available by prescription.

Some people with RA can control their joint pain, inflammation or stiffness well with their other RA medications, so they may not need NSAIDs at all or only once in a while. Other people may find their other medications don’t work well enough to control their pain and need to take an NSAID too. It depends on your body, your day-to-day pain and how well your other medications are working to keep your RA under control.

Don’t take an over-the-counter NSAID orally if you’re already taking a prescription NSAID orally, and check with your doctor or pharmacist before using a topical NSAID (generally used for local inflammation sites). If you are already using another form of NSAID, you could easily take too much medicine and put yourself at high risk for side effects like stomach pain or bleeding.

Since taking NSAIDs regularly for pain may cause serious side effects, talk to your doctor about the best way to manage your pain. He or she may suggest that you keep NSAIDs on hand just in case you need them.

No single NSAID is more effective than others. It’s up to you and your rheumatologist to decide which one may be right for you to take for your arthritis pain.

Disease-modifying antirheumatic drug (DMARD) therapyDMARDs (pronounced “dee-mards”) are the most widely used and studied drugs used as therapy for RA. If no contraindication is present, methotrexate is usually prescribed as the first DMARD treatment for RA. The recommended first step is to take one DMARD as “monotherapy.” You can usually continue to take symptomatic treatments, such as analgesics, glucocorticoids and NSAIDs, as directed by your treating doctor.

A DMARD is a medication that reduces disease activity and slows down its progression. Other than glucocorticoids (steroids), conventional synthetic DMARDs have been on the market the longest and have the most evidence to support their use for RA and similar conditions.

All DMARDs suppress the immune system, so they can make you more prone to contracting infections and having difficulty fighting them off, especially if you are also taking glucocorticoids.

DMARD categoriesDMARDs can be broadly divided into three categories.

• Conventional synthetic DMARDs (csDMARDs)

• Targeted synthetic DMARDs (tsDMARDs): including JAK inhibitors

• Biologic DMARDs (bDMARDs or “biologics”): including biosimilars

CONVENTIONAL SYNTHETIC DMARDS (csDMARDS)

This category is often simply referred to as “DMARDs” although it is really a sub-classification of the whole DMARD class of medications. Most csDMARDs are taken daily in oral tablet form.

They are made from synthetically-produced agents which do not have specific targets. For the majority of these agents, the way in which they suppress the immune system is only partially defined. However, we do know that they have been proven to suppress the immune system and to reduce swelling, pain and long-term joint damage.

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The most commonly used csDMARD is methotrexate. Methotrexate is considered the gold standard in terms of monotherapy treatment of RA with a DMARD. It is generally the first choice of medication after diagnosis as it has been used for decades with relative safety and efficacy. It is also available in various injection forms for those who cannot use it orally.

Another commonly used csDMARD is leflunomide. Other csDMARDs include hydroxychloroquine and sulphasalazine. Hydroxychloroquine and sulphasalazine are often used for milder RA. Other csDMARDs occasionally used for RA include gold injections and cyclophosphamide.

Possible side-effects for csDMARDs include digestive intolerances, headaches and allergic reactions, although many people can tolerate them with little or no side-effects.

Advanced DMARDs

For many people, csDMARD treatment is effective enough to control their RA well. However, others with moderate to severe RA may also need an advanced DMARD such as a tsDMARD or a biologic. In Australia, only rheumatologists or clinical immunologists with expertise in the management of RA can prescribe these advanced DMARDs.

Side effects of advanced DMARDs might include injection site reactions, upper respiratory infections, laboratory abnormalities and headache. The likelihood of experiencing these or other side effects depends on the individual and should always be discussed with your doctor before beginning treatment.

TARGETED SYNTHETIC DMARDS (tsDMARDS)

Targeted synthetic DMARDs are designed to target specific proteins within the body. They are small molecule medications, so they can be taken in tablet form and processed through the digestive system. They are synthetically made (like csDMARDs), so they are not biologics. However, for ease of classification and processing, tsDMARDs are regarded as biologics under the Pharmaceutical Benefits Scheme (PBS) in Australia.

The only tsDMARDs currently available in Australia for RA are a sub-group called Janus kinase (JAK) inhibitors. These target a family of proteins that work within the cell to turn on inflammation and immune processes.

JAK inhibitors target one or more of the Janus kinase family of enzymes, which are parts of the immune system that can be related to RA symptoms. Different JAK inhibitors target different combinations of JAKs. The possible side effects of JAK inhibitors are acceptable in the context of the safety profile of other DMARD treatments.

BIOLOGICAL DMARDS (bDMARDS OR “BIOLOGICS”)

Biologics are grown from biologically sourced cells. They have very large molecular structures compared to those of tablet-form medications. (Picture a basketball next to a pea and you’ll get the idea.) As such, biologics cannot be absorbed through the digestive system so they are injected or infused into the bloodstream.

You may be able to give yourself a biologic via subcutaneous injections at home (known as “self-injection”) or receive it via an infusion in a hospital or authorised infusion centre. You and your doctor can decide if an infusion is the right option for you. The infusions can last as little as 30 minutes or could take up to several hours — depending on the medication, dose and individual.

Depending on the biologic, self-injecting device options may include an auto-injector pen or a pre-filled syringe. If you’re reluctant to inject yourself, talk to your rheumatologist or their clinic staff about having someone available to give you these shots. Alternatively, you may ask a trusted friend or family member to administer them to you. If someone else injects you, ensure they have been trained to do so.

Many biologic drug suppliers have a patient support program in place, through which you can arrange for one of their nurses to come to your home and show you how to self-inject safely and to answer your questions. Be sure you are confident on how to do this procedure before you administer the medication on your own. Don’t be afraid to ask for help!

There are two main categories of biologic DMARDs; each targets slightly different parts of the immune system.

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TNFi biologics work by targeting something called tumour necrosis factor proteins, or TNF. TNF is a protein that sends signals to your body, eventually leading to inflammation that causes swelling, pain and stiffness. By inhibiting, or stopping, TNF, these medications can reduce inflammation. They are also often simply called TNF inhibitors.

Non-TNFi biologics target the immune system in different ways from TNFi medications. They interact with different kinds of white blood cells, such as T-cells or B-cells, in your immune system. They can also block chemicals called cytokines that cause inflammation.

White blood cells and cytokines are made by your immune system to fight off infection. But in RA, they may be out of control and cause inflammation. These medications can suppress your immune system, ease inflammation, stop RA’s progress and ease your symptoms.

BiosimilarsThere’s another medication option that is now available to treat RA: biosimilar medications. You may have seen this term in the news, or even heard your doctor or nurses mention it. Biosimilars work the same way as biologics and have the same indications, however, they go through a different approval process before they are made available to patients.

Due to their complex nature and large cell structure, biologic DMARDs are almost impossible to copy with 100 per cent accuracy. They can even vary slightly between batches. Biologics made by different manufacturers can safely differ very slightly from the original product and from each other.

As original biologic brand patents expire, very close copies of these (known as biosimilars) are now coming onto the market. However, they are not technically considered generic medications (which are 100 per cent identical in structure to their original synthetic medication counterparts). Biosimilars use the research already completed by the original biologic manufacturer and build on this, so they require comparatively less time and clinical trial data to receive approval.

This means they are more cost-effective to produce than the original biologic medication (sometimes called the reference biologic or originator), so they will generally provide a cost-saving to the Australian Government when compared to the original biologic. The cost savings allow the government to invest in other medications and areas of the healthcare system.

Consumers are expected to benefit from the increased range of treatment options available to them and the availability of biosimilars may reduce the likelihood of medicine shortages. However, the end cost to consumers is likely to be the same for biologics and biosimilars as both are dispensed at a fixed price through the PBS. For more information about the PBS, see Chapter Seven.

Biosimilars are taken in the same way as their reference medication (including how they are used before, during and after pregnancy), and have the same possible side effects, contraindications and monitoring tests. All biosimilars have to meet the same standards of safety and efficacy as any other prescription medication approved by the Therapeutic Goods Association (TGA).

Once approved, biosimilars have registered (®) brand names of their own. As with originator biologics, biosimilar medications must show both their brand name and the name of the active ingredient.

Which medications are right for me?It’s up to your doctor to suggest which medication combination is best for you, but you should always be made aware of the risks and benefits and be involved in the decision-making process.

Evidence shows that DMARD treatments slow radiological disease progression (meaning that your X-rays or imaging scans show that your joint damage is slowing down) and improved functional outcomes. There are many combinations of medications available, although there is uncertainty around which is the most effective as we all process medications differently.

Your rheumatologist may add an advanced therapy (a biologic/biosimilar or tsDMARD) to your treatment regime if your previous csDMARD therapy was ineffective on its own. You can only be prescribed one advanced therapy at a time as such intense suppression of the immune system is considered too great to be risked and the extra benefits too insignificant.

You can find more information about many RA medications in the education section of the CreakyJoints Australia website.

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Monitoring of DMARD therapyConventional synthetic DMARDs, such as methotrexate, can take up to a few months to take effect. The benefits of biologics and tsDMARDs are usually seen within a few weeks (but can take up to three months). As advanced DMARDS only target specific proteins within the immune system, they may cause fewer side effects than csDMARDs. However, treatment progression must follow the Australian treatment guidelines.

You will probably need to have regular blood testing while on a DMARD so your medical team can look out for potential side-effects and to help ensure that your body can continue to fight infection.

See Chapter Six for more information about monitoring your RA.

PBS qualifications for access to biologics, biosimilars and tsDMARDs

General accessFor PBS processing purposes, tsDMARDs are classed as biological agents even though they are synthetically produced. In these Patient Guidelines, we have referred to tsDMARDs, biologics and biosimilars collectively as advanced DMARDs or advanced treatments.

Advanced DMARDs are generally only prescribed to those whose arthritis has not responded to conventional csDMARDs, or who have had side effects from them. To be eligible for access to advanced DMARDs, the person must be eligible to benefit from the PBS and must sign a form acknowledging that they agree to ongoing monitoring and they must demonstrate an adequate and sustained response to the treatment.

Prior to receiving advanced DMARDs for RA, you must have failed a six-month intensive csDMARD treatment trial with a minimum of two csDMARDs for a minimum of three months each. In most cases, this must include a minimum of three months on methotrexate plus one other csDMARD. However, if one or more of these treatments are contraindicated for you or if you are unable to tolerate the minimum required dose, combinations of other csDMARDs may be considered.

As part of your initial access requirements, your ESR and CRP levels plus your active (swollen and tender) joint count will be measured. At the end of your six-month intensive csDMARD treatment trial, you must have an elevated ESR greater than 25 mm/hr and/or an elevated CRP greater than 15 mg/L. You must also have an active joint count of at least 20 active joints or at least four major active joints (elbow, wrist, knee, ankle, shoulder and/or hip).

See Chapter Two for more information about the tests used for RA diagnosis. These test results will form a baseline for comparative assessment at your subsequent treatment reviews.

Ongoing accessBAdvanced DMARDs can take up to 12 weeks to take effect. To qualify for ongoing access to these treatments in Australia, you will need to see your rheumatologist 12 weeks after commencing a treatment to assess its efficacy, possible side effects and other factors. Your subsequent appointments may have longer gaps between them (up to 24 weeks) as your condition becomes more stable.

If your advanced DMARD has not improved your symptoms to an acceptable level within the first 12 weeks, you will not qualify for continued access to that medication. However, you may be eligible to apply for another advanced treatment that works differently. In addition to the above requirements, you will likely need to take a minimum amount of methotrexate each week. Your rheumatologist will discuss these options with you.

If you are uncertain if your advanced DMARD is working before your 12-week review or if you are experiencing uncomfortable side effects from it, contact your rheumatologist’s office. You may be able to book an earlier appointment. If your side effects are severe or you cannot reach your rheumatologist, contact your GP or pharmacist or visit your local emergency department for assistance.

“Five strikes and out” ruleAt the time of publication, the PBS access regulations for advanced DMARDs for RA states that if, after one of your treatment reviews, your tests show that your advanced treatment has failed to improve your symptoms to an acceptable level, you will no longer receive PBS funding for that product. This is counted as a “strike”.

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Once your rheumatologist has recorded strikes for five different advanced DMARDs, you will no longer be eligible for PBS funding for any more advanced DMARDs for RA for the rest of your life. You may continue to access them at your own expense, but as these medications cost up to $2,000 per month without PBS funding, this is not an option for most people.

If your RA is responding to your current advanced DMARD, but your rheumatologist judges that you may have a better response to a different advanced DMARD, you may be taken off the current medication and switched to the alternative one (in some circumstances). In this case, the first advanced DMARD will not be deemed to have failed, and you may restart it as needed in the future.

If you are switched from an original biologic DMARD to its biosimilar, your PBS access will not be affected as they are considered to be the same ongoing treatment.

It is important to note that if you don’t get an adequate response from any treatment, it does not mean you have failed. You’ve done nothing wrong. It is the treatment that has failed to work for you.

It is possible that, by the time you read these guidelines, this regulation may have been changed or there may be more advanced DMARD medications available for you to switch to. Check with your rheumatologist for up-to-date information about access to advanced DMARDs.

RA medications and pregnancySome RA medications can cause issues if taken prior to conception (for both men and women), during pregnancy or while breastfeeding, but not necessarily during all three stages consecutively. For example, some medications can be taken in the first two trimesters or even throughout the whole pregnancy, while others must be ceased months before conception. Should you fall pregnant while on RA medications, it is important to tell your treating doctor as soon as possible as they may need to refer you to a specialist in the field.

To find out which medications can be used before, during and after pregnancy, it is important to discuss your options with your treating doctor.

RA medications and infection and cancer risksAs all DMARDs are designed to suppress your overactive immune system, they can lower the number of white blood cells your body makes and increase your risk of infection. They may even mask some of the early signs of infection (such as fever or increased ESR or CRP levels). This risk increases when you are on two or more DMARDs.

Having an autoimmune condition, such as RA, automatically puts you at a higher risk of developing cancer than the rest of the population. It is believed that some RA medications can increase that risk for specific cancers. These risks are noted on the consumer medicine information sheets that come with the medication.

You can find the consumer medicine information sheets for many medications using the Medicine Finder function on the NPS MedicineWise website. You can also find general treatment information on the CreakyJoints Australia website.

Much research has been done over many years regarding the relationship between DMARDs and increased cancer risk, but there is still a lot to be learned about the more recent medications. Overall, although there have been isolated cases of cancer in those on RA medication, there has been no reliable evidence to suggest that these were caused by the medication. In all likelihood, the risk would have been similar even if these people were not on RA medication.

With most DMARDs, there are times when these medications may not be initiated or may be ceased for a period. Some of these situations include having a history of recurrent life-threatening infection, untreated tuberculosis or other active infection, active demyelinating disease (MS), active hepatitis A, B, or C chronic respiratory conditions, lymphoproliferative disorder or cancer of any type.

If you have a condition like this, you will need to be treated for it by a relevant specialist before you take any medications for your RA that suppress your immune system or affect your liver. Your specialist and rheumatologist can both decide if, once your condition is either stabilised or being treated, you can start to take certain medications for your RA. However, you’ll need to be monitored closely and may also need to have regular blood tests.

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The risk of not having treatment for RAOne risk that sometimes gets overlooked is the risk of not taking evidence-based medication to control or stop the progression of RA. Rheumatoid arthritis is a serious disease that can affect many parts of the body and lead to a reduced life expectancy. If the disease is allowed to progress unimpeded (either by choice or through delayed diagnosis), significant joint damage can occur in as little as two years. The resulting deformities can be extremely painful and debilitating and seriously impact quality of life. Uncontrolled RA can also increase the likelihood of developing other severe health issues.

It is important to be aware that many arthritis treatments available over the counter or online are either meant for osteoarthritis (such as glucosamine) or are only able to ease the symptoms of RA. They won’t stop the disease progression. Some won’t do anything at all and can carry high risks of their own.

While CreakyJoints Australia will always respect individual choice and will not tell you that you should or shouldn’t undertake specific treatments, we believe it is vital to do your homework on any treatment before you agree to undertake it. Once again, always check with your doctor before trying anything new (including supplements) to treat your RA.

Reducing your infection riskYou can take steps to help prevent infections if you’re on a DMARD (especially an advanced DMARD).

• Avoid friends or family members who are sick with the flu or pneumonia. Excuse yourself from visiting sick people because it could put you at risk. Call, text or email instead if you want to check on them.

• Wash your hands thoroughly and frequently, especially if you’re in public places like a shopping centre, school or college, office buildings or restaurants.

If you notice that a lot of people at work are getting sick with the flu or even coughing, ask your boss if you can telecommute for a few days or work in a separate area.

Also, if you’re planning to have surgery, talk to your rheumatologist first. You may need to go off your DMARDs for some time before you have the surgery to reduce your risk of infection.

Signs of infectionIt is essential to identify the beginnings of infections to prevent complications. Common symptoms of infection:

• Fever that is higher than 38°C (100.5°F)

• Chills (usually accompanied by fever)

• Changes in cough type, sound and frequency

• Ear pain

• Changes in your skin, such as a skin rash

• Cuts that aren’t healing

• Sores or white coating in your mouth or on your tongue

• Nasal congestion (look for colour changes; yellow is not good)

• Unusual and worsening neck stiffness

• Burning or pain during urination

• Increased urination or changes in your urine

• Unusual vaginal discharge or irritation

• Diarrhoea

• Vomiting

• Unusual pain in the abdomen or rectum

• Changes in your mental state

If you have any of these signs, please seek medical attention through a GP (or, in severe cases, go to a hospital emergency department) as soon as possible.

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Dealing with an infectionIf you do have an infection, your doctor will assess you and help you plan an appropriate course of action. Depending on the severity of the infection, this could include:

• Starting a course of oral or intravenous antibiotics.

• Limiting your contact with others. This reduces the risk of you spreading contagious conditions to others and also, picking up more infections from them while your immune defences are low.

• Reducing or stopping some of your regular activities, possibly including exercise and social commitments, while you allow your body time to rest and recover.

• Taking time off work until you fully recover.

If you have a cold or upper respiratory infection and you are on a DMARD, it’s important to see your doctor as soon as possible. While viral infections cannot be treated with antibiotics, if you develop a bacterial infection, you may need to start antibiotics quickly to reduce the spread of the infection.

Your doctor will help you weigh up the risks of continuing on your DMARD medication (and therefore making it harder for your body to fight the infection) or reducing, skipping or ceasing your medication until your infection clears (and therefore increasing the likelihood that your symptoms will worsen). There is no fixed formula here. Your doctor will need to make a judgement call as to which avenue is most appropriate for you at the time.

“ I started methotrexate, sulphasalazine, hydroxychloroquine and a few others in quick succession. When I didn’t respond to these, my rheumy got me straight onto biologics. I got checked for tuberculosis (TB), including an X-ray, then started treatment. In March, a large and very painful lump appeared on my chest. I bounced between my rheumy, GP and the local emergency department getting X-rays, blood tests and an MRI. After a few weeks, an aspiration was performed, then exploratory surgery. It turned out to be a super-rare infection, a cousin of TB, that I’d picked up. I spent the next nine months on very strong antibiotics and off all immunosuppressants but I’m fine now.”

RAISE YOUR VOICE: If you are unable to see your normal rheumatologist or GP and you believe you have an infection, it is very important that you tell the doctor that treats you that you have RA and that you are on medications that suppress your immune system as this will most likely affect how quickly they see you and what treatments they offer you. This also applies when you are being treated for an injury (including a dental injury) as your risk of developing an infection can be quite high.

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RA medications and vaccines

Which vaccinations can be used with RA medications?Rheumatoid arthritis and other autoimmune conditions result when the immune system overreacts to specific pathogens and starts to attack our healthy cells as well. Medications that suppress immune system responses can, unfortunately, allow the pathogens to come in and start making themselves at home, leaving you at greater risk of infection.

Live vaccines are not recommended for anyone on DMARD therapy. Working out what types and levels of vaccine those with autoimmune conditions can safely and effectively receive is a precise art that requires detailed study plus a bit of guesswork, as each of our situations is different.

Before starting any medication for RA, your doctor will probably ask you about which vaccines you have had and how long ago. In many cases, they may recommend that you get some or all of your vaccinations up to date before starting your treatment. It is important that you continue to stay up to date with your vaccines, especially the flu vaccine (which is given for free each year for those with certain chronic health conditions, such as RA).

Types of vaccines and how they workVaccines are complex biological substances specifically designed to induce a protective, safe and effective immune response in humans (and animals). Vaccines work by inducing the immune system to create antibodies that bind to and block intruding pathogenic organisms (germs) or their toxins, therefore preventing their spread within the body.

There are four main types of vaccines.

Live-attenuated vaccines: A weakened (but still active) version of the germ that causes a specific disease.

Examples of live vaccines.

• MMR (measles, mumps, rubella)

• Yellow fever

• Rubella

• Oral typhoid

• Rotavirus

• Varicella-Zoster

• BCG (Bacille Calmette-Guérin)

Inactivated vaccines: A “killed” version of the germ that causes a specific disease. These are not as potent as “live” vaccines, so more doses may be needed to make them as effective.

Examples of Inactivated vaccines.

• Hepatitis A

• Flu (shot only)

• Polio (shot only)

• Rabies

Toxoid vaccines: These vaccines are made from the toxins that the germ produces, rather than the germ itself. They target the corresponding toxins produced by the intruding germ, making them highly effective and potent. In most cases, booster shots are required to maintain lifetime immunity.

Examples of toxoid vaccines.

• Diphtheria

• Tetanus

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Subunit, recombinant, polysaccharide and conjugate vaccines: These are created using only specific parts of a germ (such as its sugar or outer coating) which then target corresponding parts of the invading germ, also making them very effective. These, too, will generally require ongoing booster shots.

Examples of these vaccines.

• Pneumococcal disease

• Meningococcal disease

• Hepatitis B

• HPV (Human papillomavirus)

• Whooping cough (part of the DTPa combined vaccine)

If you need a live vaccine for international travel or feel you are at risk of developing a condition that can be vaccinated against (such as shingles), you will need to discuss all your treatment options in depth with your rheumatologist. For example, you may need to come off your medication for a time while you receive the required vaccination, or you could potentially be allowed to receive the vaccine and continue your medications. If you’re at low risk for this disease, you may be able to skip the vaccine.

The bottom line about vaccinations: Talk to your treating doctor. Vaccines are important for people with RA, however, don’t get any vaccines, even flu or shingles shots, without letting your doctor know. Your doctor can help you plan the best course of action to prevent any adverse effects.

RA medications and alcoholThere are some studies that suggest consuming small amounts of alcohol a day (and we are only talking five to ten grams) can help reduce the risk of developing RA, but once you have it, you have to be mindful of how alcohol can affect the medications you take to treat RA.

Most RA medications carry a warning about consuming alcohol while taking them (and some specifically say not to do it). This is because both alcohol and these medications can greatly affect liver function and lead to other major health issues. Put them together too often, and your risk of stomach bleeding, ulcers, permanent liver damage, and other health problems can increase. If you also have diabetes, alcohol and the sugar in soft drink mixers can negatively affect your blood sugar control.

That said, in many cases, an occasional drink or two (say, for a special occasion) is unlikely to cause any harm. What could happen is that your medications temporarily become a little less effective. Keep in mind that everyone is different, and it’s always a good idea to speak to your doctor about how your medications could be affected by any other drugs, including alcohol. Also, be wary of consuming any alcohol before your blood tests, as this could affect your results.

RA medications and travelIf you are planning to travel within Australia or overseas, you can (and usually should) take your medications with you as appropriate. Even if you are only going for a few days, you need to consider the risk of what might happen if you can’t get back before you are next due to have your medication and plan accordingly. Apart from that, taking your medications while you are away helps you to take them on schedule and to keep you feeling as well as possible.

If you have your medications weekly, fortnightly or monthly, you may be able to sneak in a trip without bringing along your medication as long as you can get home in time for your next dose.

Travelling within AustraliaIf you are travelling by car, train or road, there are no restrictions regarding what medications you can bring with you. Ensure you have enough supply for the duration of your trip. Some oral medications can be packed in your normal luggage. However, if your medication does require refrigeration, you’ll need to be more organised.

Most biologic subcutaneous self-injected medications can be kept at room temperature (up to 25°C) for one to two weeks but they cannot be put back in the fridge after a certain amount of time. Check the Consumer Medication Information leaflet for each medication for details on how to keep it cool when travelling.

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Car fridges can be a practical storage solution while you travel, or you could also use the free travel storage wallet that came with your medication. Travel wallets are specifically designed to keep your self-injectable medicine cool for around eight to ten hours. If you didn’t receive one from your rheumatologist or medication supplier, contact your supplier’s Patient Support Program (sometimes called a Customer Care Program) and ask if they can send one to you.

If you’re going on a longer trip (by any means of transport), you can call a pharmacy at your destination and advise them that you’ll be arriving with a prescription for your medication and that you’d like them to dispense it for you. Give them at least a day’s notice in case they need to order it in for you.

Check that you have enough repeat prescriptions to cover you for the duration of your trip. In most cases, you’ll get 24 weeks’ worth of repeat prescriptions each time you reapply for your advanced DMARD medication through your rheumatologist, so aim to plan your trip accordingly. Also, allow ample time for your advanced DMARD prescription application to be processed by Medicare.

If you are flying domestically, you generally won’t be able to store your medication in the onboard refrigerator, so be prepared to carry it in a travel wallet on board with you. (The temperature in the cabin is stable, whereas it can get very cold in the cargo hold and potentially freeze your medication.)

Travelling overseasPrescriptions issued in Australia cannot be dispensed through overseas pharmacies, so you’ll need to bring all the medication you’ll need with you or find out if you can see a doctor in your destination country who could issue you the prescriptions you need. Some countries have reciprocal arrangements with the Australian Medicare system, but that does not guarantee you’ll have access to a doctor there. Your doctor, Medicare and your travel insurance provider may be able to give you more information about this.

Again, some airlines may not let you use their onboard fridge to keep your medication cold and it’s not a good idea to keep this sort of medication in your checked-in luggage as it could freeze and become unusable. It’s important to check this with your airline and also ask them how you should carry your medication through security.

To travel overseas with any prescription medicine, there are some things you must do by law.

• Carry a letter from your doctor stating what the medicine is used for, how much you take, why you need it and that it is for your personal use (or for someone in your care).

• Keep the medicine in its original packaging at all times, with your prescription label complete and legible, so it can be easily identified. Biologic medications would be the main exception, as they need to be placed in a travel wallet (or onboard refrigerator) to keep them at the required temperature.

• Check that you can legally bring your medicine into your destination country. (This also applies to any supplements and complementary medicines, such as homoeopathic medicines.)

Some countries also require you to have specific vaccines before they will allow you entry. See the information about vaccines above and ask your doctor to check which vaccines you may need.

Medication information resourcesPlease note, many medications are sold under multiple brand names. You will generally find the generic name of a medication (usually the main active ingredient) under the brand name on the packaging or on the prescription label. Health professionals usually use the generic name to avoid confusion.

You can find more information about many RA medications in the education section of the CreakyJoints Australia website.

You can also download Consumer Medication Information leaflets for most medications available in Australia via the Medicine Finder function on the NPS MedicineWise website and find general treatment information on the CreakyJoints Australia website.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Nine: How to Include Holistic Wellness in Your RA Treatment PlanIt’s important to take a holistic approach when treating RA, which means having different tools, in addition to medication, which can help with different areas of the body. Although medicines have an extremely important part to play in treating your RA, there are lots of other things you can do to help fight symptoms and keep your body in the best health possible.

Maintaining a healthy weight is important for everyone, but especially when you have arthritis in your feet, ankles, knees, hips or spine as they have to work harder if you have excess weight. Being overweight or obese is a risk factor for developing RA, some research shows. It may also impact the effectiveness of certain medications you take to treat RA. Also, storing too much fat throughout your body (particularly around your internal organs) can lead to other health complications.

We recognise that some RA medications can cause you to gain weight, that it can be difficult to exercise when you are stiff and sore and that it can be too hard to plan healthy meals when you are exhausted or can’t hold kitchen utensils easily. However, you can try to overcome these factors by being creative about how you approach them and seeking help when you need it. For example:

• There are numerous gadgets and aids available to help you manage everyday tasks like cooking. You could also try cooking and freezing large batches of food when you feel well, so you can just reheat what you need on your not-so-good days.

• You can also get special aids and equipment, such as yoga gloves or supportive bandages or braces to help protect your joints during exercise.

• You may be eligible for assistance through the National Disability Insurance Scheme (NDIS) to help you access and participate in appropriate exercise classes.

You’ll find many more tips on exercising and eating well with RA in the following sections.

ExerciseTalk to your doctor before starting any new exercise routine so you know that it’s safe and healthy for you. They may be able to recommend suitable classes in your area. You can take exercise classes that are designed for people with arthritis, so you don’t damage or injure your joints.

It is also a good idea to exercise under the supervision of an exercise physiologist, a physiotherapist or fitness coach suitably qualified to help people with your condition. If they haven’t heard of your condition, that could be a warning sign that they may not be the best person to help you. They may even make suggestions that could be harmful.

Whatever your choice of exercise, start slowly and pace yourself. Plan your workouts to include rest/recovery days. Although you might ache more initially, that will usually improve over time. However, if your pain is more than just an ache, it may be a sign that something is wrong. Stop what you’re doing and, if the pain continues, consult your doctor before proceeding.

Exercise tips for RAExercise or regular physical activity may help lessen the symptoms of RA, including pain, stiffness and lack of mobility. The more you can keep moving, the better the outcome for your mind, body, and spirit. Listen to your body, though. Initially, a good rule of thumb is only to do about 80 per cent of what you think you are capable of, then stop and see how your body responds over the next day or so. If you are feeling well, try a little more, but if you’re struggling, break up your exercise routine into shorter segments.

You may experience some aches and pains as you ease your stiffness and gain strength, especially if you have been inactive for some time. Doing some sort of movement every day is important. However, if you are feeling unwell, or, if you feel exercise may cause your joints to flare (or flare more), you may want to stop until you have consulted your doctor. Or, if you are unsure, only work out for a few minutes, then stop and rest for that day. The next day, you may be able to try a little more. Soon, you’ll be able to recognise your body’s warning signs, telling you when you’ve had enough. Pushing through the pain when your joints are inflamed is generally not a good idea as you may aggravate the inflammation and cause yourself more pain and harm. Similarly, doing strong exercise when your immune system is struggling more than usual may not be a good idea.

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“ When I was first diagnosed, I was told I’d never do any exercise that would cause my muscles to strain, ever again. I’m not very good at being told what to do… and I’m now training for a 10 km run. I’m lucky to be in remission, and I’m lucky that exercise helps me manage pain and stiffness. Having a goal keeps me motivated and moving. I don’t know if I’ll be able to run the whole thing — but I’m determined to try.”

How do you get started? What kinds of exercise work best? It really depends on your symptoms, your overall fitness and health and what kinds of exercises you enjoy. Here are a few suggested exercise options for people with RA:

StretchingDaily stretching can help you manage your arthritis pain and improve your range of motion. After a three-to-five minute warm-up (marching in place or arm circles), perform a variety of stretches and hold each for about 15 seconds. Reaching for the sky and touching your toes are good places to start. Don’t be afraid to stretch any joints that tend to be problem areas, but, don’t push any stretch so far that it causes pain.

There are many websites for stretching-based routines you can follow along with. Just google “stretching” and “arthritis” to find some but inform your doctor first to ensure they are safe for you.

WalkingThis simple exercise can fit easily into your daily routine no matter how old you are or where you live. It’s free — just find a safe place to walk in your area and get moving. Find some friends, neighbours or family members to join you for a walk to make it even more fun. Walking can be good for your heart health, joint health and mood.

If the weather is bad, you can walk inside your local shopping centre. If weather permits, explore your neighbourhood, local park or local walking track. Walk on flat, paved surfaces to be safe. Make sure you have well-fitting, comfortable walking shoes and socks. Wear comfortable clothing that you can work up a sweat in. Drink some water beforehand or bring a small bottle so you don’t get dehydrated.

Start slowly and walk at an easy pace. As you feel more confident, challenge yourself to walk a little faster or farther, or both. Some people like to use personal fitness tracking devices (i.e. a Fitbit or a pedometer) to track their daily activity and encourage consistent exercise.

Tai chi and yogaTai chi and yoga are two ancient forms of movement. Tai chi is a series of flowing movements designed to help you improve function and balance. Yoga, which comes in many different styles, usually involves poses and stretches that can improve arthritis symptoms and mood.

Many people with RA do both tai chi and yoga to feel better and improve some of their RA-related symptoms. Done properly, both tai chi and yoga can be safe for people with arthritis to do on a regular basis. There are a number of arthritis tai chi and yoga programs in local communities (including chair-based yoga), as well as videos and online instruction tools.

You can also take a class from an instructor who can show you how to adapt your moves to be safe for your joints. Once you are confident you can do these safely, you may want to introduce them into your daily life at home, without the need to always attend classes.

Aquatic exerciseExercising in water is great if you have RA, because water’s buoyancy supports your weight, so you can move around without putting lots of pressure on your joints. Water also offers some resistance as you move, so it can help you work your joints and muscles and get stronger.

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HydrotherapyWater therapies use warm water in baths, showers, hot tubs, heated pools or spas to help you relax tight, sore muscles or ease joint pain. “Hydro” means water. Hydrotherapy can also mean exercising in warm water. Studies show that warm-water exercise is a good way to build strength and fitness if you have arthritis. You can use a warm shower to loosen stiff joints in the morning, or you may find a soak in a spa tub to soothe sore, aching muscles. Some research has shown hydrotherapy helpful for pain relief.

CyclingPeople with RA have a higher risk of cardiovascular disease because of the inflammation involved in the disease. Riding a bike (either stationary or regular) can help to strengthen your heart. It can help you ease stiffness, improve range of motion or flexibility and build endurance and muscle tone. It may also be a great way to spend more time with family and friends, enjoying the outdoors. If you can’t find a bike that works for you, there are companies that can modify or make to order for specific needs.

Strength trainingYou can relieve the stress on joints damaged or weakened by RA if you build up the muscles around them. Strength training is the best way to do that. You can do specific exercises that target those muscles on your own, on a weight machine or with small free weights. It’s important to do any strength exercises the right way, so talk to a physiotherapist or exercise physiologist before you begin. They can recommend strengthening moves for you and show you how to do them properly. Consider investing in a qualified personal trainer to help guide you — at least for the first few sessions — to make sure you do the exercises correctly and safely.

Weight-bearing exercise is particularly important if you have taken courses of steroids for a long period of time or multiple times a year, to enhance your bone density and balance.

Diet and nutritionRheumatoid arthritis is related to your body’s inflammatory response. The joint pain, swelling and lack of mobility all happen because of inflammation in your body.

While there is no special “diet” an arthritis patient should follow — despite what you may have heard or read online — research shows that eating certain foods, particularly those in a Mediterranean diet (which revolves around reducing your intake of processed foods and animal fats), can help keep inflammation in check. The recommendations below closely follow Mediterranean diet principles. Other diets include going gluten free and following an anti-inflammatory diet. Diets can also be good for heart health and just feeling your best. You can seek advice from dietitians, naturopaths and nutritionists, and always make sure to consult your doctor if you want to change your diet or introduce supplements.

Try incorporating more of these foods into your diet. Keep track of your symptoms to see if your symptoms improve.

Fish: Some fish are rich in omega-3 fatty acids, which help reduce inflammatory proteins in your body. These include salmon, tuna, sardines, anchovies and other cold-water fish. Eat at least 100 gms of fish twice a week.

Fruits and vegetables: Fruits and vegetables have antioxidants, which support your immune system and may fight inflammation. Eat a colourful variety of fruits and veggies like blueberries, blackberries, cherries, strawberries, spinach, kale or broccoli. Get at least 1.5 to 2 cups of fruit and 2 to 3 cups of vegetables per day.

Nuts: These tasty treats are rich in monounsaturated fat, protein and fibre, which help make you feel full and may fight inflammation. Snack on or add these nuts to your meals: walnuts, pine nuts, pistachios and almonds. Get 40 grams (about a handful) of nuts per day. More nuts could add too many calories to your diet.

Beans: Rich in fibre and protein, beans are full of antioxidants and anti-inflammatory compounds.

Olive oil: This heart-healthy fat contains monounsaturated fat, antioxidants and oleocanthal, an anti-inflammatory compound. Get 2 to 3 tablespoons per day of extra virgin olive oil in your cooking or salad dressings.

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Onions: These simple, flavour-rich veggies contain lots of antioxidants and may help reduce inflammation, improve heart health and help control cholesterol.

Fibre: In foods such as beans, whole-grain breads and cereals or fresh veggies and fruits, fibre makes you feel fuller longer and helps your digestive system stay regular. It may also lower C-reactive protein (CRP), which is found in the blood and is a strong marker of inflammation. Get plenty of fibre in your diet or try fibre supplements.

Foods to consider avoiding or reducingProcessed food: Reduce the amount of processed food (like pre-made box meals, packaged snack chips, pastries, cookies and other sweets). Avoid too much refined sugar, salt and alcohol in your diet to help reduce your levels of inflammation and maintain a healthy weight.

Gluten/wheat: Gluten, a protein found in wheat, rye, spelt, triticale and some other grains may irritate the digestive tract, exacerbating autoimmune conditions like RA. An elimination diet may be helpful for four to six weeks to note whether gluten-containing foods may be a contributor to pain, digestive and/or skin problems associated with RA. Consult your treating doctor or nutritionist before embarking on a gluten-free trial if you have issues with keeping weight on.

Nightshades: Some people believe that nightshade vegetables, such as eggplant, peppers, tomatoes and potatoes, trigger arthritis flares. There is little evidence to support this, but you can still try an elimination for two weeks or more to see if you feel better. Reintroduce nightshades after the elimination period to see if your pain flares up, and if it does flare up, consider limiting nightshades. If you feel fine after the reintroduction, then do not worry about eating nightshades.

Fad diets: Don’t try any diets that list lots of claims about how they’ll get rid of your arthritis symptoms, cure your arthritis or allow you to stop using all of your arthritis medications. Talk to your doctor before you try any diet, start eating a certain food in large quantities or start cutting out entire groups of foods. Be wary of any diet that requires you to buy anything upfront, such as the actual diet plan, foods, supplements or products. You can eat a healthy, natural diet made of foods that you can find at your local store.

“ My rheumatologist recommended the keto diet (also called the low-carb diet diet or ketogenic diet) to help me manage inflammation and lose weight I’d gained being on steroids for more than 18 months. Cutting carbs was hard at first, but the benefits for me are enormous. I have cut all potatoes/rice/sugar/flour etc and lost nearly 40 kg as a result. Losing weight has been great and helped take pressure off my joints, but it’s more than that. When I do eat processed foods with sugar in them, I feel fatigue and joint pain kick back in within a few hours and it can take days to feel like my system is back under control. Sometimes it can impact on my social life — and I don’t drink much alcohol at all as a result — but the day-to-day benefits far outweigh any inconveniences.”

Herbs and supplementsSome people with RA also feel better or have symptom relief with herbal and dietary supplements. There are many to choose from, but, apart from fish oil, there’s not much solid, scientific evidence to show they work. High-quality research on natural products and dietary supplements can be difficult to obtain due to the high cost of conducting research and the difficulty for manufacturers to patent natural products. In almost every case, herbs and supplements need to be researched more to substantiate the benefits patients say they experience.

Before you take any herbal treatments or dietary supplements, including vitamins or minerals, let your doctor know. Some herbs and supplements can interact with medicines, or even act in similar ways — so they can add to the effects of your medications. They may also worsen your symptoms by reducing the effects of your medication or cause other health risks. Make sure you let your doctor know everything you are taking.

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Talk with a doctor who is knowledgeable about dietary supplements and can guide you in selecting high-quality supplement brands to enhance the safety and effectiveness of your treatment regimen.

If your regular GP can’t help with this, you could consider seeing a qualified integrative medicine practitioner. Integrative medical practitioners are trained to ensure that dietary supplements, nutrition plans and lifestyle modification complement conventional medical treatments. Collaboration between your rheumatologist and integrative treating doctor may help ensure the safest, most effective treatment plan if you choose to use both supplements and RA medications to control your RA.

While research is mixed on the effectiveness of most dietary supplements for arthritis symptoms, some may show promise. You may find these therapies helpful as part of your overall RA treatment plan, but they won’t be a magic cure for your symptoms or automatically allow you to stop taking your medications.

Complementary therapiesComplementary therapies are those that can usually be safely used alongside conventional pharmaceutical therapies, although we recommend you get your treating doctor’s approval before you begin them.

AcupunctureThis ancient healing practice uses thin needles that are inserted into specific points on the body. Acupuncture is meant to help balance your body’s natural energy flow (also known as qi). Its effects may ease your pain, reduce muscle tightness, increase a sense of calm and improve digestion, to name a few possible benefits. Risks are typically mild, including transient light-headedness, pain at the needling site, initial exacerbation of symptoms and bleeding.

Patients with metal joint replacements and other metallic objects inside them should use caution with acupuncture due to the potential risk of developing an infection. Acupuncture should ideally be performed by a licensed acupuncturist who has completed a master’s degree or higher level of training.

Acupuncture sessions are typically performed once or twice a week. At least six to ten sessions should occur before you decide on its effectiveness and whether to continue therapies. Private health insurance coverage varies for this therapy, so check with your provider to learn if you have coverage for acupuncture. Recent research shows that acupuncture may have some benefits for people with chronic pain.

Massage therapyPerformed by massage therapists as well as other health professionals, massage involves pressing or kneading muscles and tissues in a relaxed, quiet environment. The most common type is Swedish massage. Recent studies have shown pain-relief benefits for Swedish massage, including for knee osteoarthritis. Massage therapy not only helps relieve tight muscles but can also help with anxiety, helping to ramp down the pain response as well..

Relaxation therapies or meditationTechniques to help you relax or ease stress can help you manage chronic pain or anxiety that’s common with having a disease like RA. Relaxation therapies include biofeedback, self-hypnosis, deep breathing techniques, meditation or guided imagery. There are therapists trained to help you learn to do any of these relaxation techniques properly, but you can also teach yourself to do them by using online videos or tapes. Tai chi and yoga may also be done in combination with techniques like meditation to help you relax.

Usually, relaxation is considered safe and healthy, but if you’ve had anxiety or depression, check with your doctor or psychologist to make sure it’s OK for you.

You’ll find more practical tips for RA self-management on the CreakyJoints Australia website.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Ten: Advocacy and Raising Awareness About Living with RALiving with a chronic disease can impact many areas of your life. On top of communicating with your healthcare team, you may also want to speak with your employer, support network and elected officials.

How to talk to your family and friendsWhen you have RA, you may not always look like you’re sick or in pain on the outside. People around you may not realise you hurt, that your joints are stiff or hard to move or that you’re so tired you could sleep for 20 hours and wake up still tired.

They don’t understand what it’s like to manage the pain associated with RA. The grief. The challenges and frustration that you cannot do simple things, like open a bottle, brush your hair or dance all night like you used to do. Life, for us, has changed and we do a great job of managing considering everything we are trying to deal with.

But not everyone understands that — and RA, like many chronic diseases — can be a lonely journey at times. Particularly when you stop making plans or become the person who always cancels at the last minute because you just aren’t up for it when the event you committed to actually rolls around.

Not everyone will understand. Know that your friendships with people and the way you interact with people may change. That’s not necessarily a bad thing.

“ RA has taught me to prioritise my time and only commit to what matters to me. I have a full-time job and a young baby, so my free time is so precious to me and doesn’t come around all that often. I make sure that I spend time with the people that matter most to me. Before I got sick I was always out, always socialising, always juggling commitments. Now I choose the things I want to do most and let the rest go. My closest friends understand.”

Our loved ones also often want to understand what we are going through, and to help. Let them. Asking for help isn’t easy for many of us, but it’s important to remember that you aren’t the only one on this journey and your RA affects your loved ones as well.

Take the time to:

• Explain a little bit about your disease, such as how RA affects your body, what inflammation is and how your joints or organs could be at risk for serious damage. Don’t try to unload an encyclopedia of information on others — just give them a few ways that RA affects you.

• Don’t hide your pain or other symptoms from those you love. It’s OK to admit that you are having a flare or struggling to get tasks done. Ask for help if and when you need it. Let people know ahead of time if you need help with regular tasks like getting dressed or lifting a cooking pot.

• Keep your friends and family up to date on your RA treatments. Make a list of the medications and dosages you take and give it to a couple of people in your inner circle that you trust. They may need to have this information handy in a medical emergency. Also, people that care about you want to know what you are doing to treat your disease and how you’re going. They can be the best cheerleaders for your treatment success.

You may want to talk to coworkers or other people you deal with from time to time about your arthritis. They may wonder about your condition when you’re not feeling well or if you need help with certain tasks.

It is also important to remember your loved ones are on this journey too. Encourage them to talk about how your disease affects them and look for ways to manage it together. It may also be worthwhile for them to talk to a professional about how they’re feeling about your care and diagnosis.

How to talk to your employerIn many cases, treatment and management of your disease mean you can experience few interruptions of your daily life. However, living with a chronic disease can sometimes impact your ability to be as productive as you’d like in your workplace. Employers may not understand the fatigue, pain and difficulty arthritis can cause because our condition is often poorly understood. Many of us are also very good at putting a good face on it, regardless of how we are actually feeling most days. We recommend that you have a conversation with your employer explaining your diagnosis and how it might impact your performance to better their understanding. Here are some tips.

• First, understand whom you should speak with. In many cases, a supervisor and your human resource department are good starting points.

• Explain your diagnosis, what that means for you and why you feel they should know. Show them these patient guidelines, so they can learn more.

Know your rights.

• You should disclose any disability or impairment that will affect your ability to do your job or to work safely (this includes telling them about medications that may affect you at work).

• You can choose to disclose (or not disclose) your condition at any time, including during a job interview.

• If you do choose to disclose your condition to anyone at work, they can’t tell anyone else about it without your permission.

• If you and your employer agree that you’ll need reasonable modifications to your workplace to help you do your job, you may be eligible for these modifications to be provided by the Australian Government’s Employment Assistance Fund.

• If you need to take time off for yourself or a family member, you may be entitled to receive personal/carers leave or compassionate leave. Conditions will apply.

• If you are currently working, but need to take extended time off without pay, you may be eligible to receive a Sickness Allowance from Centrelink, providing you meet the criteria.

• If need be, it may be a good idea to request time off while you adjust to new treatments.

“ I always disclose that I have RA when interviewing for jobs. I predominantly work in government and I know there are strict policies in place to ensure that I’m not discriminated against. My job is also mostly desk-based, and I don’t need any adjustments or require any special equipment etc., so it’s essentially a no-risk disclosure for me. It’s potentially a very different conversation for people in physical jobs or in the private sector, though there are discrimination laws in place.”

RAISE YOUR VOICE: Talk to your employer about their employee assistance programs and what benefits you may be eligible for.

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Making the most of democracyAs constituents, our local members of parliament — state and federal — are there to give a voice to the needs and concerns of people living in their electorates. Make the most of it.

Federal and state governments, through various laws and policies, shape our health system and directly impact the quality of care we receive. They can advocate and should be advocating for the best possible care for people living with RA, but our care is only one issue on a very crowded agenda.

So how do we help them advocate for us?

STEP ONE

We need to build understanding. Most people not directly affected by this illness only have the vaguest of understanding of what this illness is, does and means. So: Tell your story. Email, call, write a letter or make an appointment at your local MPs electoral office to talk face to face with them or one of their representatives.

STEP TWO

Telling your local member about your experiences with RA may help build their understanding of this condition. But what then? When you talk to your MP, have a specific goal in mind or something you want to ask for, such as:

• To lend their voice to a campaign to getting a new RA medication on the PBS list.

• To be a master of ceremonies (MC) at an upcoming event.

• To circulate a leaflet to their colleagues calling for more rheumatology nurses in Australia.

STEP THREE

Think about what you can give them in return. Take a selfie and tag them and circulate it on your social media channels. Invite them to be involved in a local event raising awareness about RA and publicise their involvement. As a local MP, they want to be seen acting to support the needs of their local constituents, so help them and they may be able to help you and others living with RA.

RAISE YOUR VOICE: Everyone involved in health care, including politicians, drug manufacturers, hospitals, pharmacies and doctor’s groups should put patient care at the heart of everything they do. Health care is about you — your health, your treatment options, your quality of care and your needs. Speak up if you feel that laws need to change, regulation needs to change or that your care needs to change. There are so many channels that you can use, including social media, email, phone, letters or postcards. And check our website to see what others are doing and add your voice to their campaigns

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

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Chapter Eleven: About the AuthorsThis first edition of Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis in Australia was based on Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis - 2nd Edition, produced by Global Healthy Living Foundation, Inc. (2017).

The US edition was written by the CreakyJoints Patient Council (a group of patient leaders from across the USA) in collaboration with the following medical advisors:

• Madelaine Hedgpeth Feldman, MD, FACR

• Sarah Doaty, MD

• Vinicius Domingues, MD

• Leslie Mendoza Temple, MD, ABOIM

Raising the Voice of Patients: A Patient’s Guide to Living with Rheumatoid Arthritis in Australia

1st Edition ©2020 Global Healthy Living Foundation, Inc

This first Australian edition uses some elements of the US version; however, it has been extensively revised and updated for use in Australia by members of the CreakyJoints Australia Patient Council, the CreakyJoints Australia team and our Australian medial advisors.

The CreakyJoints Australia Patient CouncilOur Patient Council members are a passionate network of dedicated patient advocates who are willing to represent other patients within the state they live, to speak on their behalf to external stakeholders and to participate in important patient-centred activities and decisions relating to patient care.

Members represent each Australian state and territory (including New Zealand). The aims of the Patient Council are:

• To share information and support each other in creating a powerful relevant national patient voice.

• To help to build an effective patient community.

• To help develop guidelines for patients with different forms of arthritis, specifically articulating how to live a successful life, despite having arthritis.

The following Patient Council members have generously given much of their free time to help create the first Australian edition of these guidelines.

• Shannyn Meloncelli

• Janine Monty

• Melinda Bowd

• With special thanks to Kasey Gardner

CreakyJoints Australia team• Naomi Creek: National Coordinator and Graphic Designer

• Rosemary Ainley: Writer and Editor

Global Healthy Living Foundation/CreakyJoints Head Office advisors• Joseph M Coe MPA: Director, Digital Content & Patient Advocacy

• Seth D. Ginsberg: Cofounder of GHLF and CreakyJoints

• Lauren Gelman: Director, Editorial Services

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Australian medical advisorsWe would like to thank the following rheumatologists for kindly taking the time to thoroughly review this edition. Your insights and suggestions were greatly appreciated.

• Dr Irwin Lim, MBBS (Hons), FRACP Irwin Lim is a rheumatologist in private practice in Sydney, Australia. His other role is as a director of BJC Health. BJC Health comprises a group of committed rheumatologists and allied health professionals, working together to treat arthritis with a coordinated and integrated approach. Irwin utilises social media, including his blog, to correct a general lack of awareness and misinformation about arthritis and rheumatic diseases. He is the author of Stuff You Should Know About Rheumatoid Arthritis, a resource to improve understanding of this disease.

• Dr Stephen Hall, MBBS, MMSc, FRACP Stephen Hall is an Associate Professor at Cabrini Medical Centre as well as the owner and Medical Director of Emeritus Research, both in Melbourne, Australia. Emeritus Research has coordinated and conducted over 200 clinical trials to date. Dr Hall has been a Senior Research Fellow (Associate Professor) at the University of Melbourne, Institute of Rehabilitation Research since 2001. Dr Hall has also authored and co-authored articles in various medical journals, including The Journal of Rheumatology, Lancet, The Medical Journal of Australia and Rheumatology and Therapy.

A special thank you to our partners at Eli Lilly for their generous sponsorship of this important patient resource.

Lilly Australia has been operating in West Ryde NSW since 1960. Since then, our mission has been consistent with our global goal to make life better for people around the world. We work to discover and bring life-changing medicines to those who need them, improve the understanding and management of disease and give back to communities through philanthropy and volunteering.

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GlossaryAdvanced treatmentBasic treatments for RA include analgesics, NSAIDs, glucocorticoids and csDMARDs. Those with more severe RA may require an advanced treatment, such as a tsDMARD, biologic or biosimilar.

Anti-cyclic citrullinated peptide proteins (Anti-CCP)An antibody present in 60 to 70 per cent of patients with rheumatoid arthritis. About 90 per cent of people with this antibody have or will develop rheumatoid arthritis over time. It is usually checked in the blood and can also be referred to as anti-CCP.

AnxietyA general uncomfortable feeling of nervousness and apprehension about something that is happening or about to happen.

ApprovedThe Therapeutic Goods Administration (TGA) has issued permission for a given medication to be commercialised for a specific disease entity.

AutoimmunityState in which our own immune system becomes dysfunctional and starts attacking ourselves. Examples of autoimmune diseases include rheumatoid arthritis, lupus, scleroderma and Hashimoto’s thyroiditis.

Biologics (biologic DMARD or bDMARD)Highly sophisticated and genetically engineered medications that target specific components that cause inflammation. These medications have been widely used in rheumatology and oncology.

Biosimilar medications (biosimilars)Genetically engineered medication designed to have structure and activity highly similar to the original biologic licensed.

Bone densityMeasurement used to assess the strength of the bones. It is widely available and is the way the diagnosis of osteoporosis is made.

Clinical trialsLengthy and costly process that new medications have to go through in order to be approved by the TGA. Usually, the new medication is compared to the current standard of care (best treatment available) or to placebo (no treatment).

Combination therapyTreatment that involves being on more than one medication in order to control the disease. Some medications work better when used concurrently (for example, methotrexate plus a biologic).

ComorbidityRefers to another disease one might have aside from the primary condition. Many patients with rheumatoid arthritis have obesity, diabetes, high blood pressure, depression or heart disease as comorbidities.

ContraindicationsStatement used often to reflect that one should avoid a certain type of treatment because of possible harm caused by conflicts between that treatment and any existing treatments or conditions.

Corticosteroid (cortisone)Highly effective medication to treat inflammatory disorders and widely used. Given its multiple side effects, patients should aim to only take it in the lowest possible dose for the shortest possible period of time — in consultation with their treating doctor.

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C-reactive protein (CRP)Protein released by the liver; high values correlate with the inflammation status of the body. It is widely used in blood tests to assess overall inflammation. Although sensitive, it not specific for rheumatoid arthritis and many conditions can cause an elevation.

CreatinineA blood test that reflects the kidney function. Since many medications are cleared and can affect kidney function, it is a very commonly checked laboratory value.

DepressionA state in which patients have a persistent feeling of sadness, hopelessness and difficulty finding pleasure in things that otherwise provided them pleasure. Depression is very common in chronic disease patients.

Disease activityObjective measurement of inflammation attributable to the disease. Doctors have developed tools and scoring systems to assess how mild, moderate or severe the disease state is at a given point.

Disease-modifying antirheumatic drugs (DMARDs)These are medications that not only alleviate symptoms but slow or stop the progression of the disease (for example, preventing erosions, nodules or lung problems).

DosageExpression used to quantify the amount of a given medication a patient is taking. That can be expressed in many different types of units, such as milligrams (mg) or millilitres (mL).

Double therapyTreatment in which a patient takes two medications for the same disease. It is very similar to combination therapy but limited to two medications.

Early RAA term widely used to classify patients who have had symptoms of rheumatoid arthritis for less than six months. The definition, however, is controversial.

Erythrocyte sedimentation rate (ESR)Blood test used to assess inflammation. Very commonly used but it is not specific to rheumatoid arthritis and it can be elevated in a myriad of conditions including cancer and infections.

Estimated glomerular filtration rate (eGFR)One of the most common blood tests used to assess your kidney function. It measures the rate of blood filtered per minute by tiny filters in your kidney called glomeruli.

EvidenceEvidence is the presence of information through research studies regarding a given intervention. The evidence can be positive or negative and many clinicians use scientific evidence as a basis for their treatment choices.

Full blood count (FBC)This is a blood test that reflects our white cells (army against infection), red cells (cells that carry oxygen to tissues) and platelets (fragments of cells that prevent us from bleeding).

Generic medicationMedication that is equivalent to the branded (original) drug in dosage, quality and route of administration. Usually, generic drugs are less expensive.

Glucocorticoid (cortisone)Highly effective medication to treat inflammatory disorders and widely used. Given its multiple side effects, patients should aim to only take it in the lowest possible dose for the shortest possible period of time — in consultation with their treating doctor.

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InflammationProcess where our white cells (army against infections) and their products become hyperactive. Physically shown as redness, warmth, swelling and pain.

Inflammatory markersBlood tests that are surrogate markers of how inflamed the body is at a given point. These markers are routinely used in rheumatology.

Janus kinase (JAK) inhibitorsMedication that works by inhibiting a specific pathway of the immune system called Janus kinase.

Liver function tests (LFTs)Blood tests that are used to screen for, detect, evaluate and monitor liver inflammation and damage.

MonitoringMonitoring relates to the need for frequent objective assessments (blood tests or X-rays) to measure progression of disease and side effects from the medications.

MonotherapyTerm used when only one medication is being used to treat a given disease.

Non-TNFi biologicsClass of medications that are biologically engineered but the mechanism of action does not involve inhibition of tumour necrosis factor (TNF).

On the marketRelates to medications that are currently commercialised and available for patients.

RecommendationsStatements made by a committee comprised of very knowledgeable experts in the field of rheumatoid arthritis. They help clinicians follow a basic algorithm but, in the end, treatment should be individualised.

Reference medicationAnother name for the original medication. For biosimilars, the reference medication is the original biologic.

RemissionState in which signs and symptoms are controlled, and based on an objective examination by the doctor, the disease activity is low. This is the ultimate goal in treating rheumatoid arthritis.

Rheumatoid arthritisAutoimmune disorder characterised by progressive joint inflammation that can lead to joint damage and destruction.

Rheumatoid factorAntibody present in patients with rheumatoid arthritis but also seen in a variety of other conditions. It is tested through a blood sample.

Rheumatoid nodulesSmall firm lumps that develop under the skin in patients with rheumatoid arthritis. They are generally near the inflamed joint.

Seronegative rheumatoid arthritisRefers to a type of RA where a person tests negative for the biomarkers, rheumatoid factor (RF) and cyclic citrullinated peptides (CCP), but still has the symptoms, such as swollen joints. High levels of these markers can also be present in healthy people or in people with other forms of autoimmune arthritis. A rheumatologist will look at all the surrounding factors and clinical symptoms before confirming a diagnosis of seronegative rheumatoid arthritis.

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Side effectsUnwanted or undesirable effects of certain medications or procedures. All medications have side effects and that should be monitored carefully. There are also side effects (or flow-on effects) of not treating your RA, such as an increased risk of joint deformity.

SynoviumMembrane that surrounds the joint and produces synovial fluid, which “lubricates the joint” for smoother movement.

TNFi biologics (TNF inhibitors)Genetically engineered medication designed to inhibit Tumour Necrosis Factor (TNF), which plays a major role in the inflammation seen in rheumatoid arthritis. These medications are approved for rheumatoid arthritis and have revolutionised the field of rheumatology.

TransaminaseLiver enzymes that are measurable through a blood test. The liver metabolises most medications; therefore, it is important to monitor such enzymes to assess if the medications are causing any damage to the liver.

Treatment guidelinesPublished periodically, treatment guidelines are designed to help standardise care for a given disease. It is normally a consensus of multiple experts in the field who thoroughly evaluate the scientific evidence and develop clinical guidelines.

Treatment planThe result of a conversation between the patient and doctor. It outlines a strategy on how to cope with the disease. That includes medications, physical therapy and alternative therapies.

Triple therapyTerm used to describe the treatment of rheumatoid arthritis with three specific medications. Generally, medications are methotrexate, hydroxychloroquine and sulphasalazine.

Tumour necrosis factor (TNF)Major molecule that drives the inflammation in rheumatoid arthritis. Given the advances in pharmacology, there are now many medications that inhibit its action, providing relief to patients.

The information in these patient guidelines should never replace the information and advice from your treating doctors.

It is meant to inform the discussion that you have with healthcare professionals, as well as others who play a role in your

care and wellbeing.

CreakyJoints Australia protects the privacy of patients and never sells information to third parties. The organisation is funded through public/private grants and sponsorships. Patients are never solicited for financial support.

FOR MORE INFORMATION, VISIT US AT:

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