Lupus Booklet

Living well with lupus

Living well with lupus2

IntroductionThis guide has been designed to help you better understand lupus and how you can best manage your health when you live with this condition. The guide covers the following topics: Understanding lupus: symptoms, cause, diagnosis and outlook Managing lupus: how different health professionals can help you to manage the condition Medications for lupus: detailed information about the range of drugs used to manage lupus Living with lupus: how you can make positive lifestyle changes such as keeping physically active, eating well, managing pain and fatigue, and dealing with your emotions and wellbeing Lupus and women: how lupus can affect pregnancy, contraception and menopause Keeping informed about lupus research: how you can keep up to date with research into lupus or become involved in research into lupus Useful resources: contact details for organisations that may help you manage your condition.

Chapter 1Understanding lupus ........................................................................................ 4

Chapter 2Managing lupus ................................................................................................ 6

Chapter 3Medications for lupus .......................................................................................10

Chapter 4Living with lupus ...............................................................................................14

Chapter 5Lupus and women .......................................................................................... 22

Chapter 6Keeping informed about lupus research ....................................................... 24

Chapter 7Useful resources .............................................................................................. 26

This guide has been designed to help people with lupus, their families and carers. It covers diagnosis of lupus, medical and conservative management, and living well with lupus. It also presents a list of resources where you can fi nd more detailed information. The information contained in this guide provides general information and advice for the management of lupus and is not intended to replace specialist medical advice. Before commencing any management options you should discuss them fi rst with your treating specialist.

ContributorsArthritis Victoriabeyondblue: the national depression initiativeProfessor Eric Morand, Monash University Centre for Infl ammatory Diseases, Monash Medical Centre Clayton

Table of contents

This guide has been developed by Arthritis Victoria in partnership with beyondblue: the national depression initiative.

www.beyondblue.org.au beyondblue info line 1300 22 4636


Understanding lupus

What is lupus?Systemic lupus erythematosus (SLE), otherwise known as lupus, is a chronic condition that results from a malfunctioning immune system. The immune system is designed to identify foreign bodies (such as bacteria and viruses) and attack them to keep us healthy. However, in the case of lupus, the immune system mistakenly attacks particular tissues including the skin, joints, kidneys and lining of the heart and lungs, causing ongoing infl ammation and pain.

What are the symptoms of lupus?The symptoms of lupus can vary, and may include: Skin rashes (both on the face and body)

Joint and muscle pain Hair loss Fatigue Mouth and nose ulcers Chest pain (as a result of infl ammation of the lining of the heart or lungs)

Anaemia (a defi ciency in the number or quality of red blood cells)

Poor kidney function Seizures or visual disturbances (resulting from infl ammation of the nervous system).

What causes lupus?Currently, the cause of lupus is unknown. However, it appears that genes may play a role as well as triggers such as an illness, injury, or a period of stress.

Who is most commonly affected by lupus?Women in their child-bearing years are most likely to develop lupus. Nine times more women have lupus than do men. Certain ethnic groups are also more likely to develop lupus, such as African-American women and Asians.However, lupus can affect men, children and older people.

How is lupus diagnosed?Lupus is a diffi cult condition to diagnose. There is no single medical test for lupus, and the symptoms can vary greatly from one person to another. The symptoms can often mimic those of other diseases, and it may take months or years to arrive at a diagnosis of lupus.A diagnosis is often made through a combination of the history of your symptoms, blood tests that focus on particular antibodies, and results of tests for affected body systems such as the kidneys and blood.

Can lupus vary in its severity?Lupus can range from mild to life threatening. This very much depends on the parts of the body that are being attacked by the immune system. Whilst infl ammation and pain of the skin and joints can impact on your quality of life, the damage that lupus may cause to your major organs, such as the kidneys or nervous system, is much more serious.The most common forms of lupus are the milder forms, and most people with lupus enjoy a full life even though they may need to take medications.

What will happen to me in the future?If you think you may have lupus, it is important to consult your doctor to obtain a diagnosis as soon as practically possible.Although there is currently no cure for lupus, there are different medications that can help to control it very effectively. If your condition

is controlled early, the likelihood of later complications may be reduced. Additionally, there are multiple strategies you can use to manage your condition, including physical activity and lifestyle changes described in further detail in this guide.Lupus is only life threatening in rare cases. Most people with lupus manage to live a full and satisfying life. Understanding your condition, knowing the healthcare providers available to help you, and being aware of what you can do to help yourself are all key steps to living well with lupus.

The most common forms

of lupus are the milder forms, and

most people with lupus enjoy a full life even

though they may need to take medications.

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1

Living well with lupus6 7

2 Managing lupus

What is a chronic condition?Lupus is considered to be a ‘chronic condition’. This means it is long-lasting and will require ongoing management. For some people, the symptoms of lupus are persistent and last for many years. For others, the symptoms may come and go, and vary in severity. For this reason it is important to have the right healthcare team in place to support you in the long-term with your individual treatment and management plans.Other chronic conditions include the various forms of arthritis, osteoporosis, heart disease and diabetes. The treatment and management of chronic conditions are different from the treatment and management of acute conditions such as a cold or a broken bone. Acute conditions tend to develop quickly, are easily diagnosed, and are usually resolved relatively swiftly.Management of lupus and other chronic health conditions usually involves multiple approaches and long-term lifestyle changes. While your healthcare providers will advise you how to manage your condition, you (as the person with the condition) will play a more active role in the day-to-day management and fl uctuations of your condition.

Your healthcare teamIn the management of lupus, you will consult a diverse range of healthcare providers. Central to your healthcare team will be your local general practitioner (GP) and your rheumatologist.

Working with your GPYour GP will refer you to specialists and other health professionals, coordinate your healthcare team, and monitor your overall health. This is why you will fi nd it helpful to have a regular GP who has a good understanding of your overall health and is prepared to work with you to learn more about the management of your health.Although GPs are not lupus specialists, they will usually be your fi rst point of contact if you have any concerns about your condition.

Working with your specialistsIf you have lupus you are likely to see a rheumatologist, who is a specialist in infl ammatory conditions of bones, joints, muscles and connective tissue. Because rheumatologists have specifi c knowledge of lupus, they can diagnose the condition and prescribe appropriate medications to manage

it. It is likely that your rheumatologist will review your health on a regular basis to ensure that your condition is kept as stable as possible and that your medication is effective.Depending on the body systems affected by your lupus, you may need to consult other specialists. Dermatologists are specialists in conditions of the skin.

Nephrologists are specialists in kidney conditions.

Immunologists are specialists in conditions of the immune system.

Ideally, all of these specialists should communicate with each other and with your GP to coordinate your medical care. Specialists can be found both in clinics at public hospitals and in private practice.

Working with allied health practitionersThe following allied health practitioners may help you to manage your condition. For information about fi nding allied heath health professionals, please refer to Chapter 7: Useful resources. Dietitians are experts in food and nutrition. They provide advice and information about healthy eating,

weight loss and diets for specifi c needs such as diabetes.

Exercise physiologists can help you improve and maintain your health and fi tness through physical activity. They can advise you about how to get started with an exercise plan. They can prescribe suitable exercise programs tailored to your individual needs. If you are having problems getting motivated or overcoming barriers to participating in physical activity, your exercise physiologist can work with you to develop strategies to help you with this.

Occupational therapists can help you adapt your life to your condition. They can show you how to modify activities of daily living, such as cooking and showering, and provide advice on useful aids or equipment. Pharmacists are experts in medicines (both prescription and non-prescription medicines). A pharmacist can help you to understand your medicines and how to use them safely and correctly. Physiotherapists can help you keep your joints moving and muscles fl exible by using a range of treatments that may include mobilisation and manipulation


Management of lupus and

other chronic health conditions

usually involves multiple approaches

and long-term lifestyle changes.

Managing lupus

of joints, massage, therapeutic exercise, or the use of special equipment. Your physiotherapist can also provide you with advice on strategies to help you manage and relieve pain. Podiatrists specialise in conditions affecting the feet. They can help you with footwear, nail care, and foot orthoses (shoe inserts). Psychologists can teach you how to cope with any emotions you feel as a result of your lupus. They can also teach you techniques and strategies to help manage pain. Social workers can help you access social services such as housing, home help and personal care.

You can access these practitioners in clinics through public hospitals and community health centres, as well as in private practice. For people with a chronic condition such as lupus, reimbursement may be available for a limited number of visits to private practitioners. Ask your GP for information about current Government schemes that help with coordination of care for people with chronic conditions and complex care needs.

Working with your health professionalsWith any chronic condition it is important to have a good relationship with your healthcare professionals. A good GP is essential as this is someone you will see more regularly than your specialist. Your GP will be able to ensure your prescriptions and blood tests are up-to-date. Usually, your specialist will want to engage with your GP as a team to help manage your condition. Your specialist should be someone who is experienced in the management of lupus. At some hospitals there are special clinics for the support and management of people with lupus or related conditions where you may be able to receive specialised care that is not available in the wider community.

Lupus support groupsLupus support groups can be a valuable resource for providing support, information and social interaction. People with a similar chronic condition can provide an empathetic environment in which to share experiences and the challenges you may face in managing your condition. Within the group you may fi nd alternative ways to help you live well.

The role of complementary therapiesComplementary therapies are treatments that are not part of the conventional treatment (such as medicines or surgery) of a disease. Complementary therapies may ‘complement’ or work alongside the treatments prescribed by your specialist, GP, and other health professionals.It is important to speak with your GP or specialist before consulting a complementary therapist or using a complementary therapy. This is because the treatment may impact on the medical treatments you are receiving. Occasionally, some complementary therapies can have negative side effects, they may worsen your condition, or they may interact with your prescribed medications.Some complementary therapies are not backed up by rigorous scientifi c evidence of their effectiveness. This does not necessary mean that they will not work, but it does mean that you should judge their effectiveness for yourself. Before you use a complementary therapy always ask yourself:

What evidence is there that this therapy will work for my condition? Have I asked my doctor about this therapy and whether it is safe for me? Is the complementary therapist qualifi ed and accredited? Can I afford this therapy on an ongoing basis?

When you have trialled a particular complementary therapy for a period, ask yourself: Is this therapy improving my health and quality of life?

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9


Medications for lupus

There is currently no cure for lupus. However, the medications prescribed for lupus can manage the symptoms and assist in controlling the overactive immune system response. Because there is no one perfect treatment for lupus, many people take small doses of several different medications at the same time. While the thought of taking multiple medications may be off-putting, think of it as a recipe – a good combination of fl avours usually works better than just one by itself.Medications used for lupus fall into one of the following categories: Nonsteroidal anti-infl ammatory drugs Corticosteroids Hydroxychloroquine (anti-malarials)

Immunosuppressants.

Nonsteroidal anti-infl ammatory drugsNonsteroidal anti-infl ammatory drugs (NSAIDs) are commonly used in the treatment of symptoms of lupus. These include over-the-counter medications such as ibuprofen (e.g. Nurofen), or prescription drugs such as Voltaren, Celebrex, Oridus, and others. NSAIDs are useful to treat infl ammatory pain, such as arthritis pain, and are also sometimes used

to treat other infl ammatory pain including headache or pleurisy.The main side effects of NSAIDs occur in the gastrointestinal tract, especially the stomach and oesophagus (gullet), where they can cause indigestion, ulcers and even haemorrhages. Sometimes NSAIDs are used in combination with stomach-protecting drugs for this reason. More recent NSAIDs such as Celebrex or Arcoxia may have a lower risk of this type of side effect. NSAIDs are also known to cause other problems for people with lupus such as increased blood pressure, fl uid retention and kidney function impairment. For these reasons they are often avoided where there is presence of lupus kidney disease. There is also some controversy about the safety of NSAIDs for people at risk of heart disease, as some studies have reported an increase in the risk of heart attack and stroke. Given that people with lupus are at higher risk of heart disease, the risks versus benefi t of using NSAIDs should be carefully considered.

HydroxychloroquineMedications such as Plaquenil (hydroxycholoroquine) are referred to as ‘anti-malarials’ because they were originally used for the treatment of malaria. We now know them as gentle, but very effective controllers of unwanted immune system activity in chronic conditions such as lupus and rheumatoid arthritis. Usually taken as one or two tablets daily, hydroxychloroquine is effective in helping in the treatment of skin and joint problems associated with lupus. We also now know that patients who take hydroxychloroquine tend to be less likely to have fl are-ups of their disease, so most rheumatologists recommend them to be taken by all people with lupus for the long term. Side effects for this medication are uncommon. Occasionally, they can cause rash or stomach upsets (including diarrhoea). If the dose is too high they can cause eye damage, but this is extremely rare when the correct dose is used. Annual eye checks are recommended, to be on the safe side.

CorticosteroidsSteroids, also known as corticosteroids, cortisone, prednisone and prednisolone, are very effective agents that reduce infl ammation. Steroids are actually a naturally occurring product in the human body. They were discovered because of the anti-infl ammatory effect of the human body’s own naturally occurring steroids. Hospital studies have shown that around half the people presenting with lupus have used steroids at some stage to help control their condition. Steroids are highly effective and essential in the treatment and management of lupus, including for some people with skin or joint disease, and more commonly for people with internal organ disease.The main problem with steroids is that they have signifi cant side effects. These side effects are unlike those of some medications which may be associated with allergies. With steroids, almost everyone can get side effects depending on the dose taken. It is worth remembering that all steroid side effects are proportional to the dose taken, so you and your doctor will often use other strategies to ensure that the

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Medications for lupus

lowest dose possible is taken. Some of the side effects can include: Mood changes Skin thinning, resulting in easy bruising Weight gain due to increased appetite and decreased metabolism Osteoporosis, and people with low bone density are usually given calcium and vitamin D supplementation to counteract this Risk of diabetes and high blood pressure Unwanted hair growth Cataracts, associated with long term use only Increased infections due to suppression of the good parts of the immune system as well as the overactive parts.

While these side effects sound bad, most people using steroids to manage lupus end up using very low doses with minimal side effects, even if the initial dose is high. The difference between well-controlled lupus and lupus that is affecting your health can be a few milligrams of steroids – so avoiding them at all costs is not recommended.

ImmunosuppressantsThere are families of other medications that modify unwanted activity of the immune system in chronic conditions such as lupus. Examples include azathioprine (Imuran), mycophenolate mofetil (Cellcept), cyclosporine (Neoral), lefl unomide (Arava), methotrexate, and cyclophosamide. Azathioprine is a well-established medication in the management of lupus and is also used in the management of other immune diseases and transplantation. Methotrexate is a very commonly used medication in rheumatoid arthritis where it is regarded as so safe that is now the standard treatment. Mycophenolate is increasingly used, especially to treat lupus kidney disease. Each of these medications has particular effects on lupus and particular side effects, so each should be used under close specialist supervision.

Managing your medicationsIt is important to be well informed about what goes into your body, especially when it comes to medications. Studies suggest that well-informed patients actually have better outcomes in the management of their condition.You can download information sheets on the medications used in the management of lupus from the Australian Rheumatology Association website, www.rheumatology.org.au. Or you can obtain them from your doctor or pharmacist.Try to ensure you take your medications as prescribed, in the correct doses, and at the advised time of day. Your pharmacist may be able to help with a pre-packed dosing box if required. It is best to avoid making changes to your medications without advice from your healthcare management team, including your GP and specialists, especially if you are considering stopping or increasing treatment.

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Studies suggest that well-informed

patients actually have better outcomes in the management of

their condition.

13


Living with lupus

Importance of self-management for lupusLiving with a chronic health condition such as lupus requires you to take an active role in its management. This is called ‘self-management’. Self-management may involve a number of things, including: Learning about lupus Making informed decisions with your doctor and other healthcare providers about your treatment Making positive lifestyle changes such as engaging in physical activity and eating a healthy diet Trying to maintain regular sleep patterns Managing your relationships, and Continuing to be involved in things that matter to you such as work, hobbies and social activities.

Active self-managers often feel more confi dent and in control of their ability to manage their symptoms. There is a range of self-management and lifestyle programs that can teach you how to more effectively manage your health. Contact Arthritis Victoria about self-management programs available in your area. If you live interstate, contact your local Arthritis Foundation offi ce.

Physical activityRegular physical activity is recommended for general health and wellbeing whether you have a chronic condition or not. The Commonwealth Government's Department of Health and Ageing has produced a set of national physical activity guidelines that provide recommendations for Australians of all ages.The current guidelines for Australian adults recommend 30 minutes of moderate intensity physical activity on most days of the week to optimise health benefi ts. This 30 minute period does not need to be completed in one block, but can be accumulated in smaller blocks throughout the day. Participating in regular physical activity can reduce your risk of developing chronic conditions such as heart disease, stroke, high blood pressure, type 2 diabetes, osteoporosis, and certain cancers. To download a copy of the National Physical Activity Guidelines visit www.health.gov.au.

Regular physical activity can also help to manage or prevent the symptoms or long-term consequences of lupus, such as: Pain – physical activity releases feel-good hormones called ‘endorphins’ that can help to mask pain short term Fatigue – physical activity improves endurance and stamina over time so that everyday tasks become easier and less tiring. Physical activity can also improve the quality of your sleep

Heart disease – people with lupus are at an increased risk of developing heart disease. Physical activity is a proven strategy for preventing heart disease Osteoporosis – certain medications used for lupus can increase the risk of developing osteoporosis. Physical activity can stimulate bone building cells to strengthen or maintain bones.

Physical activity

Figure 1. The benefi ts of physical activity for people with lupus

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Reduced pain and improved

mood

Release of endorphins

Reduced risk of

osteoporosis

Bone cell stimulation

Reduced risk of heart

disease

Improved cardiovascular

fi tness

Less fatigue and improved

mood

Improved quality of

sleep

Less fatigue and better stamina

Muscle strengthening


Living with lupus

It is worth considering the following points when putting your physical activity program together. Start with small amounts of low-intensity physical activity and build gradually. Include some cardiovascular exercise in your routine such as walking, cycling or swimming. Cardiovascular exercise increases your heart rate and makes you ‘huff and puff’. It is important for preventing heart disease. Include weight bearing activities such as brisk walking, jogging or lifting weights. Weight bearing activities stimulate bone building cells to strengthen or maintain bone. Consider low-impact forms of physical activity such as swimming, water exercise or riding an exercise bike if the joints and muscles in your lower body are painful. There are many different forms of exercise to choose from and the type that will be best for you will depend on your personal preference, the severity of your symptoms and whether or not you have other chronic illnesses. Benefi cial activities include walking, swimming, hydrotherapy, tai chi, yoga, gentle strength training, and bike riding.

If your condition is worsened by exposure to ultraviolet rays, you will need to think about exercising indoors, early or late in the day, or wearing protective clothing and sunscreen (see also ‘ultraviolet exposure’). Consult an exercise specialist such as an exercise physiologist or physiotherapist for an individualised program if you don’t know how to get started or haven’t exercised in a long time.

Eating wellYou cannot make lupus better or worse by including or excluding specifi c foods. Your body works best when you eat a wide range of healthy foods. Most people fi nd that they feel better if they eat a balanced diet full of cereals, fresh fruits and vegetables and choose foods that are low in fats, salt and sugar. Eating a balanced diet and having an adequate fl uid intake can also help provide you with better energy levels, help to maintain your weight, and give you a greater sense of wellbeing which may improve your symptoms. The Commonwealth Government publishes a useful guide to healthy eating called Food for Health. You can fi nd it at www.nhmrc.gov.au.

If you feel you need personalised advice about what to eat, ask your GP to refer you to a dietitian or contact one direct via the Dietitians Association of Australia, www.daa.asn.au.

Ultraviolet exposureUltraviolet (UV) light, especially sunlight, can induce fl ares of lupus. These can include skin rashes in sun-exposed areas, and more systemic fl ares. When you have lupus you don’t have to become a hermit, but you should ‘slip, slop, slap’ by wearing UVA and B sunscreen every day. You should also cover your skin and wear a hat when outdoors. Less commonly, UV light from fl uorescent lights, including low energy light bulbs, may induce rashes in some people with lupus.

Sleeping wellAdequate sleep is important for general health and wellbeing, especially when you live with a chronic health condition. Being sleep deprived can make coping with the pain, fatigue and stress of your condition more diffi cult. Getting adequate sleep on a nightly basis is an important self-management tool. To ensure you get good quality and adequate sleep, consider the following: Go to bed and get up at the same time every day, even on weekends Have a quiet ‘winding down’ ritual before going to bed – which may include having a hot (non-caffeinated) drink, reading a book or meditating Set up a quiet and dark space for sleep and make sure you are warm or cool enough in bed Avoid exercising immediately before bed, and don’t engage in activities in bed such as watching television, working on a laptop, or reading material for work or study.

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Living with lupus

Managing pain and fatiguePain and fatigue are two common symptoms of lupus that can decrease your quality of life. However, they can both be well managed with a range of medical and self-management strategies. Different people will fi nd different strategies work best for them, so you may need to trial various approaches to fi nd the combination that best suits you. Strategies for managing pain and fatigue include: Mental distraction that aims to distract you from your experience of pain; for example meditation, visualisation, creating a shopping list in your mind, counting backwards by three from 100 Physical distraction which means getting involved in an activity that you enjoy; for example watching a movie, talking to a friend on the phone, patting a pet, going shopping Medications such as analgesics and anti-infl ammatories that are prescribed by your doctor or specialist Physical activity that increases stamina to reduce fatigue and releases ‘feel good’ hormones known as endorphins to help mask pain

Pacing that involves breaking tasks up into small achievable parts so that fatigue doesn’t limit your ability to complete the task and pain isn’t exacerbated. For example, you might clean up the kitchen after dinner over the course of the evening during ad breaks on television, rather than cleaning it all up at once.

Managing emotionsIt is normal to experience a range of emotional reactions when you are diagnosed with a chronic condition such as lupus. Common reactions include feeling: Anxious or nervous Sad and tearful Confused Angry (“Why me?” “Why now?”) Overwhelmed Out of control.

It is important to remember that living with a chronic condition can impact not only on your physical health, but also on your mental health. There are strong links between depression and chronic physical conditions. Depression is common – 1 in 5 women and 1 in 8 men will experience depression in their

lifetime. For people who live with a chronic physical condition, this fi gure is even higher. Research shows that 28 per cent of people with a chronic physical condition also have a mental disorder.

Having a chronic physical condition puts a person at greater risk of developing depression. The symptoms of chronic physical conditions, as well as some of the treatments, can result in major lifestyle changes which may cause severe disruptions to people’s work and social life, and create fi nancial diffi culties. For people with a chronic physical condition, depression makes living with the condition even more diffi cult. It can make it harder to fi nd the energy to eat healthily, exercise or take medication regularly. Having a chronic physical condition and depression can also make it seem like an effort to connect with family members and friends. This can make people with the condition feel isolated and make it harder for them to recover from depression.

Depression is not just a low mood, but a serious health condition that affects a person’s biological functioning and well-being for a sustained period of more than two weeks. People with depression fi nd it hard to carry out their normal daily activities. They can experience a prolonged, uncharacteristic period of low mood, reduced interest in their usual activities, tiredness, disturbance of sleep and appetite, and negative thoughts and feelings. Depression is an illness, and effective treatments are available.It is important to seek help early – the sooner the better.For information about the general symptoms of depression and effective treatments, go to www.beyondblue.org.au or call the beyondblue info line on 1300 22 4636.For information about accessing treatment and getting a Medicare rebate, see beyondblue Fact sheet 24 – Help for depression, anxiety and related disorders under Medicare. For details of how to obtain the beyondblue fact sheets, see Chapter 7: Useful resources.

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Living with lupus

Tips for maintaining your wellbeing Get information. Finding out more about lupus and depression and seeking advice may help you to feel more informed and in control. Look for credible sources of information, such as those listed at the end of this guide. Get support. Identify friends and family members whom you can talk to and who will help you to remain positive.

Keep a journal and make notes about how you are feeling. You may fi nd it useful to write down your worries and concerns, and then identify some practical steps you can take to address those issues. Talk. Don’t try to block out or fi ght unpleasant thoughts or feelings. Talking about the problem with friends, your partner, other family members or a health professional can help reduce feelings of tension. Take time for yourself. Sometimes you may just need time out from thinking about your illness. Keeping up hobbies or participating in pleasant activities like visiting friends can help.

Take good care of yourself. Try to maintain a good diet, sleep well, and get some regular exercise, such as walking daily. Evidence shows regular exercise can boost mood. In addition to the tips outlined in this guide (see sections on ‘Physical activity’, ‘Eating well’, and ‘Sleeping well’), both beyondblue and Arthritis Victoria have more detailed fact sheets available on each of these topics.

Avoid drugs and alcohol. You may be tempted to use drugs and/or alcohol to make yourself feel better and to escape from your problems. Drugs and alcohol can worsen your emotional state and increase your risk of developing anxiety or depression. See beyondblue Fact sheet 9 – Reducing alcohol and other drugs. Go easy on yourself. Having lupus can be tough, so give yourself permission to feel upset about it. Asking for help or support does not mean that you are weak. It is important to note that stress is not depression. However, acute distress associated with tough times can occur, and may be a risk factor for depression if it persists.

Don’t expect to have all the answers. Remind yourself that it is OK to feel unsure about the future. Draw on your strengths. Try to recall a tough time that you managed to overcome in the past. Remembering these times can remind you of your strengths. Think about what worked then and how you might be able to apply those strengths and strategies to your current situation.

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Active self-managers

often feel more confi dent and in

control of their ability to manage their symptoms.

21


Lupus affects nine times as many women

as men, and there are specific issues

relating to women who have lupus.

23

Lupus and women

Lupus affects nine times as many women as men, and there are specifi c issues relating to women who have lupus.

SexThere is no reason to alter your sexual life because you have lupus. You may fi nd that fatigue can be an issue and some medications may affect your libido. It is important to discuss your individual needs with your partner, and any concerns you have about your medications with your GP or specialist.

PregnancyMany people with lupus are young adult women who may wish to have children. For this reason there is much known about the effects of lupus on pregnancy and vice versa. Having any chronic condition may make it slightly harder to become pregnant, and lupus is no exception. It is vital to consult your doctor and medical specialists if you have lupus and you are intending to become pregnant. They may need to make important changes to your medications to ensure a safe pregnancy. The best way to have a safe pregnancy is to have your condition well controlled at

the time of conception, so it is in your best interests to work closely with your healthcare team.Lupus can affect pregnancy adversely, and unfortunately there is a chance of miscarriage, low birth weight or other problems. Once pregnant, people with lupus should generally be under specialist care to ensure that the risk of any complications is carefully managed.

ContraceptionThe use of contraception is advised if your lupus is unstable or you are on medications where it is advisable not to become pregnant. Excellent studies have now proven that the oral contraceptive pill does not signifi cantly interfere with lupus. However, if you are considering use of the ‘pill’ you will need to discuss it with your doctor, as with any medication or therapy, as there may be other side effects that need to be considered. Non-hormonal contraception (for example condoms) can be used safely.

Menopause and hormone replacement therapySome women with lupus undergo premature menopause due to the impact of lupus on their body. This may result in cessation of menstruation. This is not common, and can be reversed in some cases if the lupus can be very well controlled. Usually, menopause has no signifi cant effect on lupus. Hormone replacement therapy (HRT) is generally not advised because of multiple side effects unrelated to lupus. If HRT has been recommended for other reasons, be aware that there is a small risk of your lupus becoming worse as a result of commencing HRT.

5


Ask your specialist if they

are involved in any lupus research or have contacts at

major centres involved in research.

How to fi nd out about researchAsk your specialist if they are involved in any lupus research or have contacts at major centres involved in research. The internet can be a great place to fi nd information, particularly from reputable websites such as those listed in this guide (see Chapter 7: Useful resources). Currently there is a signifi cant amount of research being conducted in the area of lupus and most of the information is available publicly.

How to take part in researchLupus research usually involves giving consent for the confi dential use of your clinical data and blood samples for assessment of molecules potentially involved in the presentation of lupus. As the cause of lupus is not known, there is a lot of research to be done and you are encouraged to become involved.Clinical trials, the study of new medications for the treatment of lupus, are growing in number. If you become involved in a clinical trial it is likely that you would be eligible to receive a new medication that is not yet available. These types of studies tend to be conducted at major centres, so ask your specialist how you can become involved.

Keeping informed about lupus research6

How to support researchEven if you decide not to participate in research into lupus, you can still offer fi nancial support. Locally, you can support consumer research, programs and activities in several ways. You can donate to Arthritis Victoria, or to your local State or Territory arthritis offi ce.

25


Useful resources

Information from websitesThe web can be a useful source of information. However, you should be aware that not all information is accurate or reliable, and some treatments and practices available overseas may not be accessible or approved in Australia.Visit the reputable websites listed below for further information on lupus and related topics.Lupus Foundation of Americawww.lupus.orgCommonwealth Government’s Health Insitewww.healthinsite.gov.auBetter Health Channel www.betterhealth.vic.gov.auNational Health and Medical Research Councilwww.nhmrc.gov.auDepartment of Health and Ageing www.health.gov.auThe Cochrane Librarywww.thecochranelibrary.com

Arthritis VictoriaArthritis Victoria provides a range of programs and services to promote health and wellbeing and to assist people living with chronic musculoskeletal conditions to manage their condition.

Arthritis Victoria provides the following training, programs, information and services: Information services– Information sheets and booklets– Website– Telephone information service– Library Self help and support groups Physical activity programs Community programs Self-management programs.

For information about Arthritis Victoria’s programs and services, visit www.arthritisvic.org.au, or phone 03 8531 8000 or 1800 011 041 (toll free for country callers).

Specialist informationThe following associations and organisations can help with information, for example fi nding a specialist and information on medications.

Australian Rheumatology Association02 9256 5458www.rheumatology.org.auContact the Australian Rheumatology Association for medication information sheets, for details of the closest specialist to you, and to fi nd out more about working with your specialist.

Medicines Line & National Prescribing Service1300 888 763www.nps.org.auCall the Medicines Line for independent information about prescription, over-the-counter and natural medicines.beyondblue: the national depression initiative1300 22 4636www.beyondblue.org.auInformation on depression, anxiety and related alcohol and drug problems, available treatments and where to get help. All beyondblue fact sheets and materials can be obtained free of charge from the beyondblue website or via the beyondblue info line.

Allied healthTo fi nd a particular allied health professional or for more information, contact the following associations or organisations.

Australian Association of Social Workers03 9388 1399www.aasw.asn.au

Australian Physiotherapy Association03 9092 0888www.physiotherapy.asn.au

Australian Psychological Society03 8662 3300www.psychology.org.au

Dietitians Association of Australia02 6163 5200www.daa.asn.au

Exercise & Sports Science Australia07 3856 5622www.essa.org.au

Independent Living Centre03 9362 6111www.ilcaustralia.orgThe Independent Living Centre provides an extensive range of assistive technology for daily living. Products are on display and demonstrations and advice can be obtained from occupational therapists or physiotherapists with specialist knowledge in assistive technology and access.

Occupational Therapy Australia Victoria03 9481 6866www.otausvic.com.au

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Arthritis Victoria incorporating Osteoporosis Victoria263 – 265 Kooyong Road Elsternwick Vic 3185PO Box 130 Caulfi eld South Vic 3162Phone 03 8531 8000Toll free 1800 011 041Facsimile 03 9530 0228Email [email protected] www.arthritisvic.org.auABN 26 811 336 442© Arthritis Victoria 2010

Print publicationThis work is copyright. You may use material from this publication without altering it for personal or non-commercial use only. You may not store, amend or reproduce material for any other use or by any process without obtaining prior written permission. Requests and enquiries concerning copyright should be addressed in writing to: Manager Communications, Arthritis Victoria, PO Box 130, Caulfi eld South Vic 3162.ISBN: 978-0-9578714-2-7

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