Ahead of Time: A practical guide to growing older with HIV - WA AIDS Council
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Ahead of Time: A practical guide to growing older with HIV Family Travel Faith Future
Contents
Pages 4 - 15 Pages 16 - 61 Pages 62 - 89 Pages 88 - 103
Introduction 4 Medical Challenges of HIV 16 Managing Social Change 62 A Checklist for 88
The Immune System 19 lood Sugar, Insulin
B Sex 64 Aged Care Assessment
healthy living
Growing Older 6 Resistance and Diabetes 47 Teams (ACAT) 77 with HIV
Cardiovascular Health 24 Your Home 70
with HIV Cancer Screening 34
Living with diabetes
Being Alone -
Extended Aged Care
and HIV 49
But Not Lonely 71
at Home (EACH) 78 Support Services 92
Body Shape Changes 35
The Basics 14 Menopause 52
Friendship, Families
Extended Aged Care at Contact Details
Changes to Bones 38 Home Dementia (EACH D) 79
Mental Health and Pets 73
of HIV Liver Health 41 - Dementia and Residencial Care Services 80
Disclaimer: The appearance of
Finances and planning individuals in this publication does not
Cognitive Problems 56
Kidney Health 44 for your future 75 aking decisions
M necessarily indicate their sexuality or
Gastrointestinal Health 58 for the future 80 their HIV status.
ome Help and
H
Dental Health 59 Supported Accommodation 75 Taking control 87 Acknowledgement of photographers:
Cameron Mills (www.cammills.com),
Disclosure 60
John McRae (www.johnmcrae.com),
Cameron Muir Productions
(www.cmp.au.com)
2 3
Introduction
Introduction
The impact of HIV on our bodies and on the immune Ageing is a process that is natural for everyone—it’s the
system as we get older is greatly affected by ageing. HIV process of growing older. The process of ageing includes
affects each of us differently. Some people progress to a reduction in strength, endurance, speed of reaction,
symptoms very quickly, while others live for 20-plus years agility, metabolism, sexual activity and hearing acuity. The
without any signs of immune suppression or symptoms. bones become more brittle, the skin drier and less elastic
What is this book about? Each of us ages differently as well. How well we age and and the teeth may shed. Ageing is associated with, or
how the ageing of our bodies’ impacts upon our health is responsible for, the ever-increasing susceptibility to disease
unique to each of us. Therefore, HIV infection—coupled and death that accompanies advancing age. There has
with natural ageing—creates added challenges for been increasing discussion and great debate about what
maintaining good health. age this increased susceptibility begins, and whether this is
very different for people who live with HIV.
Process Impact Strength Body Debate Natural Health
4 5
Growing Older with HIV
Growing Older Ageing is not a disease,
it’s natural
with HIV Although challenging, we can adapt to the changes and strive
to get the most out of life. When HIV is in the picture as well,
there are additional social and medical challenges to consider.
Managing change—in our bodies and in our approach to life—
can help us work through problems and live a
healthier, happier and more fulfilling life.
Challenge Strive Adapt Change Confront
6 7
“I stepped back, took a long hard look at my life
Growing Older with HIV
and realised that although I wasn’t doing too bad
for someone my age, I wasn’t as young as I used to
be either.
I wasn’t enjoying partying like I used to and I
could no longer keep up. The hangovers were
getting worse, I wasn’t having as much fun, I was
losing weight and I was going to the doctor more
often. I realised things had changed...
Now I’m thinking more about what I want from
life, I look after myself better, I’m making new
friends and I’m having a different kind of fun.
Life is good!”
8 9
When protease inhibitors (PIs) first became available
The information • That Lypodystrophy (redistribution of body fat) is
What this book
Growing Older with HIV
Growing Older with HIV
in 1996, things radically changed for people with HIV. clinically significant because it is associated with the
Combination therapy revolutionised antiretroviral (ARV)
treatment and HIV is now increasingly considered for in this booklet is presence of several risk factors for cardiovascular
disease such as diabetes, hypertension (high blood does not do:
many people a chronic, but manageable condition. The
ability to achieve and maintain higher levels of health—
designed to help you pressure), elevated total cholesterol (blood fats), and
elevated triglycerides (fatty acids)
The book is deliberately limited in its scope, and you are
likely to find it does not answer all your questions about
previously thought to be unobtainable—has allowed many
to resume their lives, and live into older age.
understand: • That Aboriginal, Torres Strait Islanders, Pacific Islanders growing older with HIV. Because information about HIV is
becoming much more complex and comprehensive, it is
and Maori people are at higher risk of developing
• The similarities between ageing and the courses of virtually impossible for any single resource to cover all the
Growing older can present challenges to us all, regardless diabetes and cardiovascular disease at an earlier age
HIV infection and Acquired Immunodeficiency Disease issues about ageing with HIV for all positive people. Some
of HIV status. But living with HIV and taking treatment can
(AIDS) suggest that HIV infection compresses the • That middle-aged women, who are HIV positive, have issues are currently being investigated or research is being
bring additional challenges. We will be the first generation
ageing process, perhaps accelerating co-morbidities risk factors for cardiovascular disease related both to undertaken to establish best practice.
of people with HIV to grow older. There’s still a lot more
(other illnesses) and frailty the menopausal transition and to the HIV infection
research to be done on ageing and HIV to guide our These issues are well-covered by a range of existing
journey, so in the meantime we need to be vigilant about • How age-related conditions, such as liver disease, • That age is different from the length of time a person publications which are available through AIDS councils
our individual physical and emotional health needs. kidney disease, cancer, menopause, cognitive lives with HIV. For example, a 60 year old who is and other organisations or online at www.afao.org.au.
function (thinking and understanding), bone mineral newly diagnosed may have very different experiences Towards the back of this booklet, there is a list of AIDS
Ageing might be confronting to some, but there are
density (BMD), cardiovascular disease (CVD), and and levels of health than a 60 year old who has been councils and PLHIV organisations where you can access
compensations: with age comes maturity, acceptance,
lipid and glucose metabolism (process by which food diagnosed for 20 years—this person’s experience and counsellors and treatments officers.
understanding and a greater respect for health and
is converted into energy) may be aggravated and/ level of health may also be very different depending
life. With more life experiences we can have better This booklet does not replace your doctor. It is designed
or accelerated by HIV infection itself and by HIV on whether they have commenced treatments or not.
coping skills, resilience, and a more robust sense of self. to give you an overview and help explain issues related to
treatments—referred to as Highly Active Antiretroviral P lanning ahead, consulting with your doctor and staying
Recognising these benefits while accepting and adapting HIV and ageing. It is essential that you see a skilled and
Treatments (HAART); and as Antiretrovirals (ARVs) in control of your health in the best way you can, is a
to the challenges can help us to achieve a happier and experienced doctor to manage your health.
healthier future. practical way forward.
10 11
Growing Older with HIV
Don’t try to read this booklet from cover-to-cover
like a novel. You may feel overloaded, and some
information is repeated in different sections, where
it relates to specific issues.
Use the contents page and the colour index to skip
straight to the sections that are relevant to you.
12 13
The Basics of HIV
The Basics of HIV There are a number of changes which have led to
improvements in HIV treatments:
Over the past twenty-five years, there have been a number of changes in the ways HIV infection • We have a clearer understanding of how HIV works • The use of genotyping and phenotyping assays
is understood and managed. These changes have led to great improvements in treatment and inside the body (most commonly referred to as resistance testing)
management of HIV infection and have greatly increased the range of options available. measure the likelihood of resistance to antiretroviral
• The use of the viral load test measuring the amount of
drugs and provide an indication of which drugs and
Since the advent of Highly Active Anti-Retroviral Treatment (HAART) involving combinations of HIV circulating in your blood is now standard practice
combinations of drugs are working
antiretroviral drugs (ARVs), deaths from AIDS have dramatically declined, and people with HIV in Australia, Europe and North America. The results of
taking treatments now have a much longer life expectancy. this test can help in making treatment decisions. It can • We have a clearer idea of the short- and long-term
also show how well the treatments you are taking are side effects sometimes experienced by people using
working against HIV these drugs, and how best to manage most of them.
Improve Options Body Resistance Measure Treatment
14 15
Medical Challenges of HIV
Medical
Challenges of HIV
Difference Attitude Support Diet Direction Moderate
16 17
This chapter covers some Even though you receive your HIV care from a HIV
The Immune System What can you do?
Medical Challenges of HIV
Medical Challenges of HIV
specialist or clinic, it is still important to have a general
of the health related issues practitioner (GP) or family doctor for health needs Ageing on its own inevitably results in a gradual decline in
Know about HIV
that aren’t related to HIV. Many GPs also offer services
faced by people with HIV as that may not be available at your HIV clinic, but which you
the functioning of the immune system.
treatments and when
People who first get HIV when they are older (say over 60)
they grow older. It features may need from time to time, such as support if you need
nursing at home, mental health nursing, physiotherapy or
will, without treatment, progress to AIDS much faster on to start taking them
what some people have done podiatry.
average than someone who gets HIV, say, in their 20s.
Improvements in treatments for HIV have been
IV is often described as having the impact of ‘rapidly
H accompanied with an increased life expectancy for
to make a real difference in As you get older you may need to coordinate your
various health care needs and your doctor, PLHIV or
ageing’ the immune system; although this effect is far people living with HIV. Prior to the advent of effective
their lives AIDS organisations may be able to assist you to plan and
more pronounced in untreated HIV infection. At this stage,
the ongoing impact of HIV on the immune system—even
treatments in the 1990s life expectancy for people with
HIV was an average of just over 10 years from the time
organise this.
Improvements in HIV therapy are helping people with in treated HIV infection—is not yet fully understood and is of infection. Studies soon after the advent of effective
HIV live longer and more active lives. But living with HIV Keep your doctor informed about symptoms you may still being researched. treatments suggested that life expectancy for people with
and taking HIV medications can add to the challenges be experiencing, as well as possible interactions caused HIV infected before they were 40 was now somewhere
of maintaining good health. Antiretroviral tolerability by other drugs, including any natural or complementary between 8—15 years less than people without HIV
decreases with age. If you are starting therapy when you therapies you are taking. infection. Recent studies with even more improved
are older you may be more likely to experience side effects Healthy habits and regular health maintenance will lead to treatments show that the life expectancy of many
and laboratory abnormalities with antiretroviral drugs less illness and a better quality of life. people with HIV is now becoming quite close to the life
(ARVs). However, taking responsibility for your health can expectancy of people without HIV.
prevent conditions from becoming more serious.
Maintenance Responsibility Improvements Transition
18 19Follow the recommended Some other tips to Know about therapeutic drug
Medical Challenges of HIV
Medical Challenges of HIV
dosing instructions help with your pills interactions and inform your doctor
Those people who are likely to have close to a normal life • If you miss a dose then don’t double up about all the drugs you are taking
expectancy are those who get diagnosed early, get the
• If you find you often get well into the day and can’t Prescription drugs, over-the-counter drugs and
best treatments before their immune system is damaged
remember if you’ve taken your pills or not, then get a complementary/natural therapies can all interact with HIV
and are able to follow the recommended dosing for their
pill box (dosette box) from your doctor which allows treatments, and may affect how well both the HIV drugs and
treatments without interruption for the rest of their lives.
you to put your pills in an allocated slot for each day of other treatments work. This includes the contraceptive pill
Following the recommended dosing instructions means: the week—so you can go and check whether you’ve and implants for women, with some HIV medications making
taken them or not the pill less effective as a contraceptive.
• taking the full dose of each drug as prescribed
• Keep a backup or emergency supply of pills at the
• taking them at regular intervals as prescribed (if you
places you regularly spend a lot of time and keep
have to take your pills once a day it is often good
them in a safe place, for example your workplace,
to associate taking them with a daily event such as
partner’s place, or a place you go to on weekends
reading the morning paper or having breakfast).
• If there is going to be an interruption to your usual
routine—plan ahead—to make sure you can still take
your pills.
Reactive Plan Ahead Habit Reminder
20 21Avoid any long treatments breaks — Know about recreational can further suppress your immune system and may slow Complete the checklist for healthy
Medical Challenges of HIV
Medical Challenges of HIV
down your recovery from infections.
even missing one to two doses has drug interactions ageing at the end of this booklet
In addition to the drugs, the partying lifestyle, itself, can
been shown to increase the chance Recreational or party drugs can harm your health and the weaken your immune system. Staying up for long periods and have a discussion with your
effects can be harmful for both the short and longer term.
of resistance of time, not eating enough, or not eating the right foods HIV doctor and other specialists
The use of ecstasy, crystal/ice and other types of can damage the immune system of any person, even if
For a period of time when ARVs first became available
they are in great health.
you are seeing
methamphetamines may cause dangerous, even fatal
there were doubts about how long these treatments
interactions with some types of HIV treatments, as the There is a lot of research that shows things like smoking,
would remain effective against HIV—and some of the Methamphetamines and ecstasy can also make eating
HIV drugs slow down the body’s elimination of having a lot of stress in your life, not getting enough
earlier drugs were associated with serious side effects. difficult, which can be a problem for people who need to
recreational drugs. exercise, not getting enough sleep, depression, and being
take treatments with food.
However, we now know that ARVs can work for the socially isolated are bad for your health. One of the body’s
Some drugs interact with HIV treatments, leading to Heavy alcohol use can also have potentially serious
long term and that there are a lot more treatment systems that may be affected is your immune system.
treatments that don’t work as well or have worse consequences for people taking HIV medications and may
options available should side effects become a problem Following the tips for healthy living is not just good for
side effects. affect how well you adhere to your HIV medications.
for one drug. your overall health, but is probably good for your immune
Using ecstasy, crystal/ice and other types of system as well.
It also used to be common for people with HIV to take
methamphetamines and other party drugs is likely to
a break from their treatments. We are now more certain
further suppress your immune system, making it more
that staying on treatments all of the time is more likely to
difficult for your body to fight off disease. Heavy drinking
produce the best long-term outcome.
Best Outcome Checkups Health Interaction
22 23Speak to your doctor about You should also speak to your doctor about vaccinations Changes in blood lipids (fats) are associated with both There are many risk factors for cardiovascular disease.
Medical Challenges of HIV
Medical Challenges of HIV
that you may want to avoid. For example, if you are HIV infection and ARV treatments and with increased risk They include:
getting vaccinated against: planning on travelling, you should speak to your doctor of cardiovascular disease. Both HIV infection and ARV • smoking (tobacco and marijuana)
• hepatitis A about the vaccinations that you can safely have and leave treatment can change the cholesterol levels in your blood
• excessive alcohol consumption
plenty of time to get them. and increase the risk of cardiovascular disease.
• hepatitis B • amphetamine use
• bacterial pneumonias
Cardiovascular Low density lipoprotein (LDL) is also known as bad
cholesterol because it can add to the build up of plaque • high blood pressure
Health
• influenza (Flu)—a yearly vaccine. in your arteries and increase your risk of getting coronary • poor diet
These infections can cause more difficulties with heart disease.
• insufficient physical activity
adherence to HIV treatments, as well as contribute to the Cardiovascular disease (CVD) refers to a group of diseases High density lipoprotein (HDL) is also known as
rapid progression of the infection in people with HIV, so it and illnesses of the heart and blood vessels and includes: • obesity and abdominal fat accumulation
good cholesterol because it helps to protect you against
is important to speak with your doctor about the range of (as measured by waist circumference and your
• coronary artery disease (narrowing of the arteries that coronary heart disease.
vaccinations that are now available. BMI [body mass index])
supply blood to the heart, which can lead to chest As people with HIV live longer, cardiovascular disease is
You can also speak to your doctor about information pain [angina] or heart attacks) • blood lipid abnormalities, for example,
becoming an increasingly significant problem for people
on other vaccinations available, such as vaccines for the • high total cholesterol (> 5.2 mmol/L)
• cerebrovascular disease (strokes and other problems with HIV. It is now perhaps one of the most common
human papillomavirus (HPV); the virus that may cause • high LDL (>4 mmol/L)
with blood vessels in the brain) causes of death for people with HIV.
genital warts, cervical cancer and anal/penile cancer • low HDL ( 2.0 mmol/L)
(although this may not be effective if you have already
the HIV virus itself, and thus reduce HIV viral load to
been exposed to HPV). • peripheral vascular disease (blocked blood vessels in • impaired glucose metabolism
undetectable levels. However, as awareness of the
the legs).
increasing problem of cardiovascular disease has grown, • insulin resistance
many doctors now describe an important secondary • diabetes (fasting glucose >7 mmol/L).
goal in HIV management is to try to reduce the risk of
cardiovascular disease in people with HIV.
24 25The risk factors identified above however are ones that
What can you do?
Medical Challenges of HIV
Medical Challenges of HIV
you can change through appropriate treatment or by
making lifestyle changes.
i) Attitudes and understanding
However, risk factors that you can’t change include:
People with HIV generally understand the need to take
• older age (>45 for males and >55 for females)
HIV treatments to prevent advanced HIV disease. As
• male gender (women tend to lose any protection from awareness of the link between HIV and cardiovascular
CVD once they become post-menopausal) disease grows, we now need to have as much awareness
about the need to reduce our risk of getting cardiovascular
• being HIV positive
disease.
• family history of CVD.
Understand that now is the best time to act!—not
Some ARV treatments are associated with changes delaying lifestyle changes until you have symptoms or until
to blood lipids (fats) and some of the older HIV drugs you are at high risk.
increased the risk of diabetes—both of which increase the
It is never too soon to start dealing with risk factors—the
risk of cardiovascular disease.
sooner you do, the more you are reducing the risk of
Studies show that HIV measurably adds to cardiovascular developing cardiovascular disease. For example:
risk if you also have other risk factors present, but without
• stopping smoking results in large decreases in your risk
these other risk factors being present the impact of HIV on
factors within the first year
increased risk is far less noticeable.
• if you are overweight, each kilogram you lose will
This is why increasing attention in the care and treatment
immediately reduce your blood pressure.
of all people with HIV also focuses on preventing
cardiovascular disease.
26 27ii) The menu of things you Stop smoking. • you can talk to your GP for support and suggestions as • choose healthier fats:
Medical Challenges of HIV
Medical Challenges of HIV
well. She or he can advise you of new and emerging - less than 10% of calories should come from
can (or may need to) do If you smoke then stopping smoking is the single most
pharmaceutical therapies and treatments that could saturated fats such as beef, beef fat, veal, lamb,
important thing you can do to reduce your risk of
Regular monitoring. make quitting even easier pork, lard, poultry fat, butter, cream, milk, cheeses
cardiovascular disease. There isn’t any debate about it
and other dairy products made from whole or 2
not being easy! Quitting smoking can be one of the most • for the cost of a local call from anywhere in Australia,
As part of regular monitoring you should be getting your percent full-cream milk, coconut milk, coconut oil,
difficult, yet rewarding things a person can do: the Quitline, contactable on 131 848 or 137 848,
blood pressure taken and your blood lipids and blood palm oil and palm kernel oil and cocoa butter
provides advice and assistance to smokers who want
glucose levels done periodically (usually bloods are taken • most smokers’ say they would like to quit, and many
to kick the habit. The Quitline can help smokers plan - most fats in your diet should come from sources
after overnight fasting). have tried at least once. Some are successful the first
their attempt, give advice on different techniques, of polyunsaturated and monounsaturated fats,
Both your lipids and glucose levels should be measured time, but many other people try a number of times
provide information on the availability of stop smoking such as fish, nuts, seeds and vegetable oils
before starting or changing anti-HIV treatments. If you before they finally give up for good
programs and supply written material on how to quit. (e.g. salmon, trout, herring, avocados, olives,
aren’t aware that these tests are available, ask your doctor • if you are thinking of stopping smoking, or have and walnuts; and liquid vegetable oils such
about them. Reduce alcohol intake.
made the decision to stop, it is important to choose a as soybean, corn, safflower, canola, olive and
You might also want to initiate a discussion about your method that suits you and your lifestyle Excessive alcohol use is known to be associated with sunflower).
cardiovascular risk with your doctor. • bear in mind that research has shown that high blood pressure. There are also studies however, that • try to limit sugary, fatty and salty take-away meals
combination approaches offer the best long term indicate that a small glass of alcohol each day may reduce and snacks
success rates. So for example, you might decide to your risk of heart disease.
• drink mainly water.
cut down your smoking gradually; however, if you
A diet that’s good for your heart.
cut down AND use nicotine replacement therapy (e.g. Detailed dietary information is available from the Heart
nicotine patches, tablets, gum etc.) then you are more The main features of a diet that is good for your heart are: Foundation www.heartfoundation.org.au and HIV doctors
likely to succeed than if you only use the cutting can refer you to an experienced HIV dietician.
• eat a variety of foods
down method
• include vegetables, wholegrains, fruit, nuts and seeds
every day
28 29Maintain a healthy weight. high risk. Your doctors can give you advice about getting a classes of lipid lowering drugs that decrease total Get hypertension (high blood pressure)
Medical Challenges of HIV
Medical Challenges of HIV
pedometer to count your number of steps. and LDL cholesterol levels and lowers cardiovascular treated appropriately.
Weight loss tends to reduce your levels of LDL and VLDL
disease risk:
(the “bad” fats) and raise your levels of HDL (the “good” If walking is a problem for you there may be low impact Exercise and diet modification may be attempted first
fats). Weight loss also reduces blood pressure. exercise classes you can access close to where you live, - Statins: are used to reduce total and LDL when mild hypertension is observed. If the hypertension
such as aqua aerobics. cholesterol levels in HIV positive patients persists or is severe, then treatment will usually be
Increase your physical activity. (artovastatin and pravastatin are preferred recommended.
Get elevated lipid (blood fat) levels
Aerobic exercise also lowers LDL and VLDL levels and because they interact less with ARVs than
treated where appropriate. There are a number of different classes of drugs that may
increases HDL levels. It can also help lower your blood other statins).
be used in combination. Some are not recommended
pressure. Exercise—even at a moderate level—improves There are different options that may be tried to lower your - Fibrates: can be used to decrease triglyceride because of known interactions with ARV treatments. It is
your cardiovascular health. Note that exercise such as lipid levels if you are concerned that they are high: levels and when used with statins, they may have important that whoever is prescribing these medication
weight lifting, which is anaerobic does not have the same • where your HIV treatment regime includes protease an additional effect (gemfibrozil, and fenofibrate). knows about all the drugs you are on.
benefit. inhibitors or other drugs that have been shown to These lipid-lowering drugs may interact with ARV Sometimes, after getting your blood pressure under
The recommended levels of exercise is 30 minutes of be associated with higher levels of blood fats, it may treatments, so it is important that whoever is prescribing control and putting in place the necessary exercise
moderate activity per day (2.5 hrs per week) on five or be possible to change your treatment regime. This, them knows about all of the medications you are currently programs and having lost weight, it may be possible to
more days of the week. accompanied with dietary modification and exercise, taking. (There are initial small studies showing some reduce the dose of anti-hypertensive drugs or stop taking
may be tried first benefit from these drugs in people with HIV, but longer
Another way to monitor your activity is to walk 10,000 them altogether.
steps a day if you are at low to moderate risk of • if this first step doesn’t work, or if your lipid levels larger studies are still being done).
cardiovascular disease, and 15,000 steps a day if you are at are very high, there are a number of different
Access Exercise Treatment
30 31Due to your increased cardiovascular disease risk, iii) The process of changing How often have we heard excuses? Smokers on average
Medical Challenges of HIV
Medical Challenges of HIV
the overall goal may be to change, but not stop, do not weigh less than non-smokers. Sure, on average
your HIV treatments. You don’t have to change every risk factor now: do some people initially put on weight when they stop
it in steps. smoking, but in the longer term, they are in fact likely to
There is still debate and controversy about the exact
weigh less than if they hadn’t stopped smoking. Stopping
HIV treatment guidelines for older people who are at We’ve all done those new years’ resolutions about a new
smoking is the most important thing you can do.
significant increased risk of CVD. Some large studies have healthy life starting on January the 2nd. Trying to make a
shown that protease inhibitors (PIs) are associated with an dozen changes at the same time isn’t usually a successful You don’t have to do this without help.
increased risk of cardiovascular disease when other risk strategy. Make a priority list—work out what’s achievable
and realistic. Think about the process of deciding to go on
factors are also present.
treatments and then taking your treatments every day.
However, there are also studies showing that untreated The first step is often picking a date. You had a doctor helping you and a lot of information
HIV infection is significantly associated with increased resources available. It was a decision you were making for
There’s often a process we go through in our minds
cardiovascular risk (i.e. HIV and the body’s response to it the rest of your life.
about making changes. We know we should, but we
on their own lead to increased risk).
keep delaying it until tomorrow. Sometimes an important The decisions you make about reducing your risk of
There are also studies that show a break from your process is picking a date further away—and saying on this cardiovascular disease are becoming just as important,
treatments is associated with an increased risk of events date I’ll start to do X—and working yourself up to begin and there are often a host of programs, services,
that are bad for your health. At the moment the strong implementing a change on that day. organisations, groups and health practitioners that are
consensus is that the benefit of staying on treatments— available to help you.
which are modified for your cardiovascular risk—far Work out what’s most important.
All the evidence suggests that working with others to
outweighs stopping or not starting treatments because
implement lifestyle changes has more chance of long-term
of the cardiovascular risk associated with some anti-HIV
treatments.
‘But if I stop smoking success than doing it on your own.
I’ll put on weight’.
32 33Cancer Screening What can you do? People with HIV are also at significantly increased risk
Body Shape Changes
Medical Challenges of HIV
Medical Challenges of HIV
of heart disease, with HIV infection and ARV treatments
People with untreated HIV can be at higher risk of a wide already contributing to this increased risk. HIV-positive Historically, HIV disease has been associated with changes
range of infection-related cancer types. The ageing of the
Cancer prevention is possible smokers are also at increased risk of different kinds to body shape.
population with HIV means that even in treated patients, Maintenance of optimal immune function through HIV of cancers.
Prior to HIV treatments being widely available, people with
cancer may soon become one of the leading causes of treatment will prevent many HIV-associated cancers.
If you smoke, then quitting is the single most advanced disease often developed what was called ‘HIV
morbidity (illness) and mortality (death) in people with How high we should aim in terms of CD4 cell counts
effective way to improve your health. wasting syndrome’ which was associated with a rapidly
HIV. Recent research shows that immune deficiency is is an unknown factor at this stage, but will hopefully
ageing appearance and the loss of subcutaneous fat—
the probable explanation for the increased cancer risk; be answered by currently planned studies of the early Screening for the early detection of cancer is the same as
most visible in the face. Plastic surgeons suggest that the
suggesting a broader than previously appreciated role for treatment of HIV infection. it is for the general population, except for:
loss of this subcutaneous fat in the face plays the biggest
the immune system in the prevention of cancers related to • men who have sex with men (those over 40 role in the normal ageing of the face.
infections Smoking cessation— should talk to their doctor about getting an anal
In the late 1990s a number of people on treatments
For men who have sex with men, cellular changes in the the other top priority cancer check)
developed a syndrome known as ‘lypodystrophy
genitals and anus, including those caused by the human Smoking can weaken your overall immune system— • women with HIV should get a pap smear every year. syndrome’. This syndrome was particularly associated with
papillomavirus (HPV)—the virus that causes warts— placing people with HIV who smoke at greater likelihood
Speak to your doctor for more information about these lipoatrophy (the loss of fat in the face and the limbs). This
sometimes leads to anal cancer. This is more common of getting some opportunistic infections and AIDS-
and other types of cancer you may be at higher risk pronounced lipoatrophy was shown to be particularly
in HIV-positive men and especially those with a low defining illnesses in patients with a low CD4 count.
of, and about whether a vaccination for HPV would be associated with some of the treatments used to treat
CD4 count.
Smokers who are HIV positive are much more likely to effective for you. HIV, particularly d4T (stavudine) and less commonly AZT
For women, abnormalities in cervical cells, including those develop many of the conditions linked to smoking than (zidovudine) and ddI (didanosine).
caused by HPV, and cervical cancer can occur regardless those that are HIV negative, with most of these conditions HIV treatments that are most associated with lipoatrophy
of HIV status. They are more common in women with HIV, rarely occurring among non-smokers. of the face and limbs are now rarely used. As a result
and can be more invasive.
the more severe effects of lipoatrophy are rarely seen in
people who commenced treatment this century.
34 35What can you do? Cosmetic treatments
Medical Challenges of HIV
Medical Challenges of HIV
Some cosmetic treatments became available and
Regularly have your health accessible well after lipoatrophy became a problem
for people with HIV. Check with your doctor or local
monitored with your GP PLHIV association to see if you may now be eligible for
As we become older the number of minor and major subsidised cosmetic treatment for lipoatrophy.
illnesses we are at risk for increases. Having HIV both adds
to the number of illnesses and to the risk of getting some A good diet and regular exercise
illnesses. That is why regular monitoring is important—
You’ll see recommendations for a good diet and
and many aspects of how you metabolise fats will be
regular exercise in every good living guide. People
monitored for. Sudden visible changes in fat metabolism
with HIV probably have more reasons to follow these
are now less likely to be related to HIV treatments but to
recommendations—but unfortunately changing your diet
some other underlying cause.
or regular exercise can’t replace the lost fat. Exercise can
however build body mass in some areas where fat loss
Change treatments — has occurred.
don’t stop treatments
If treatments may be contributing to lipoatrophy there
are usually many other HIV treatment options available.
Current medical advice recommends against taking any
breaks from HIV treatments.
36 37Changes to Bones For Australians, the main source of vitamin D is from
What you can do? Get appropriate screening of your
Medical Challenges of HIV
Medical Challenges of HIV
exposure to sunlight. Vitamin D3 is formed by the action
Loss of bone mineral density (osteopenia), which can of sunlight (UV light) on the skin. A deficiency of vitamin D bone mineral density (BMD)
lead to more fragile and brittle bones (osteoporosis) is a can contribute to osteoporosis because without it, calcium Prevention is better than cure If your doctor considers you to be at increased risk of
common condition associated with ageing. Osteoporosis is will not be fully absorbed by your body. osteopenia or osteoporosis, he/she will recommend you
Ways that you can decrease the risk of bone mineral
most common in post-menopausal women. Lifestyle risk factors for osteopenia include: density loss includes: have an x-ray (called a DEXA scan) to assess your BMD.
This will usually be recommended if:
People with HIV may be at increased risk for osteopenia • smoking • making sure you have adequate levels of calcium
and osteoporosis because: in your diet: Low fat dairy products and leafy green • you have the lifestyle risk factors described above
• excessive alcohol
• the lifestyle risk factors are more prevalent amongst vegetables are good sources of calcium. Calcium and • your medications include drugs that may increase
• a very low body weight vitamin D supplements are also available the risk of bone mineral density loss (some protease
people with HIV
• low levels of physical activity • regular weight-bearing exercise: Walking, jogging, inhibitors are considered to increase the risk)
• some antiretroviral medications are associated with
increased risk • lack of calcium and vitamin D in the diet regular dancing and a host of other physical activities • you are a post-menopausal woman with HIV
help to strengthen bones
• HIV itself may cause metabolic changes that decrease • low levels of oestrogen or testosterone. • you are over 65.
bone mineral density (BMD). • stop smoking, and avoiding excessive alcohol; both
If you have these lifestyle risk factors and are concerned
accelerate bone loss
Vitamin D is essential for bone health, because it helps: about their long term implications, you may want to
• to get enough sunlight to produce vitamin D, a initiate a discussion with your doctor about having a
• increase the absorption of calcium and phosphorous
person needs to expose their hands, face and arms screening test of your bone mineral density.
from the stomach
(around 15% of body surface) to sunlight for about
• regulate the amount of calcium in the blood 6–8 minutes, 4–6 times per week (before 10am or
after 2pm in summer, for moderately fair people).
• strengthen the skeleton.
38 39Take more active steps, including Liver Health There are a number of reasons why people with HIV may
Medical Challenges of HIV
Medical Challenges of HIV
be more likely to experience liver damage. These include:
appropriate treatment, if you are The liver is one of the most important and largest organs • increased use of both prescription and over-the-
diagnosed with low BMD in your body. It has been described as the body’s ‘chemical counter medications, that can cause liver damage
If you have low BMD then you are considered to be at processing plant’. It plays a key role in food metabolism (especially paracetamol)
increased risk of bone fractures (osteoporosis). In this case, and digestion, in producing immune system proteins and
• increased incidence of hepatitis B and C
treatments that may be recommended for you include: importantly for people with HIV, in the breaking down of
prescription and other drugs, and alcohol. • increased levels of alcohol and other drug use.
• dietary supplements of calcium and vitamin D
Older age (even without HIV) is associated with decreased Symptoms of liver damage include:
• prescription drugs used to prevent and treat
liver function. • pain in upper right abdomen or generalised
osteoporosis.
A healthy liver is important to process medicines abdominal pain
If you have osteoporosis and active symptoms (e.g. pain)
effectively, so if your liver has been damaged by drinking • fatigue
then devices such as canes or even a walker can reduce
too much alcohol, you are more likely to experience
the risk of falls and diminish pain. If pain is a problem, • nausea
side effects from HIV medications (especially if you have
then exercise classes like aqua-aerobics may be available
hepatitis). • dark urine
as an alternative to walking.
The blood fat increases caused by some HIV medications • clay colored stool (faeces)
can also be made worse by heavy drinking.
• jaundice (yellowing of the skin and white part of
the eyes).
Supplements Recommendations Mediation
40 41What you can do? • If you have hepatitis or high levels of blood fats, you Monitor your liver’s health
Medical Challenges of HIV
Medical Challenges of HIV
may have to cut down or stop drinking alcohol
You can have decreased liver function without any
• If you have liver disease, avoid high doses of vitamin A
Look after your liver by: symptoms. Liver function tests (LFTs) are part of regular
and high doses of iron. Some herbal therapies are liver monitoring for people with HIV and results of LFTs in
• Getting vaccinated against hepatitis A and B toxic and some interact with HIV treatments in ways people with HIV are often outside of what is considered
• Get appropriate treatment if you have hepatitis B that are toxic to the liver. the ‘normal’ range. Such results do not necessarily mean
or hepatitis C. There are now treatments available Having HIV and hepatitis B or C can accelerate the you have, or are going to have, a huge problem with
which are having increasing success rates, and when progress of both infections and make both more difficult your liver. Your doctor will know when the LFT levels are
treatment is successful it substantially reduces the risk to treat. Hepatitis B is mainly spread through sex without something to be more concerned about.
of longer term liver damage a condom—particularly rough sex that draws blood, but
• Eating a healthy diet with lots of fruit and vegetables can also be spread through sharing injecting equipment. Let your HIV or Hepatitis doctor
• Avoid taking more than 4 grams of paracetamol in any
Hepatitis C is mainly spread through sharing injecting know about all of the drugs you
equipment, but is rarely spread through sex.
24 hour period are on
• During sex, wash hands and toys and change
• Avoiding high fat food (deep-fried foods, fatty meats, As we get older it is often the case that we are on more
condoms and gloves between partners
processed vegetable oils etc.) and more drugs for various conditions, therefore the
• If injecting, do not share any equipment, including chances of having drug interactions increases.
spoons and tourniquets.
42 43Kidney Health Urinary infection, can also lead to kidney infection and The different types of urinary tract infection can include:
What you can do?
Medical Challenges of HIV
Medical Challenges of HIV
kidney disease, particularly if it keeps recurring or is left • urethritis—infection of the urethra
Kidney function gradually declines as you get older, but untreated.
• cystitis—infection of the bladder
this rarely causes serious problems. You can decrease the risk of
Urinary Tract Infections (UTIs) • pyelonephritis—infection of the kidneys.
getting kidney disease by:
Diabetes (high sugar levels) and hypertension (high blood
Urine is normally sterile, which means it doesn’t Some of the symptoms of urinary tract infection include:
pressure) are the most common causes of chronic kidney
Living a healthy life style.
disease. The rates of both of these conditions are usually contain any bacteria, fungus or viruses (micro organisms • wanting to urinate more often, if only a few
significantly higher in people with HIV, and as a result, or germs). drops (urgency) All the usual things reduce the risk of kidney disease:
as people with HIV get older, chronic kidney disease may Urinary tract infections (UTIs) are caused by these micro- • burning pain or a ‘scalding’ sensation on urination • not smoking
become more common. organisms, which infect the urinary system by entering
• a feeling that the bladder is still full after urination • a healthy diet
Some HIV treatments have been linked to kidney disease: through the urethra or, rarely, from the bloodstream.
The most common culprit is a bacterium common to the • pain above the pubic bone • staying fit
• that link has been confirmed with indinavir—a drug
digestive tract called E. coli (Escherichia coli)—which is • blood in the urine. • keeping a good body weight
now rarely used
usually spread to the urethra from the anus.
• Tenofovir has the very rare side effect of Fanconi Kidney infections are serious. • drinking lots of water—at least 6–8 glasses a day is
Other micro-organisms, such as Mycoplasma and If infection reaches the kidneys, prompt medical attention recommended by kidney health organisations.
syndrome, a disorder of the kidney tubes in which
chlamydia can cause urethritis in both men and women. is needed. In addition to the general symptoms, a person
certain substances normally absorbed into the Getting blood pressure tested and high blood
These micro-organisms are sexually transmitted so, when with a kidney infection can also experience:
bloodstream by the kidneys are released into the urine pressure treated.
these infections are detected, both partners need medical
instead. • chills
treatment to avoid re-infection.
As well as lifestyle changes, there are many successful
Kidney disease has often been called a ‘silent disease’ • fever
drug treatments for hypertension. Some anti-hypertensive
because there are often few symptoms until the disease
• loin (lower abdominal) pain medications also reduce any progression of kidney disease.
is severe.
• pain in the back.
44 45Minimising your risk of getting diabetes and • avoiding spermicidal products, particularly with a
Blood Sugar, longer due to improved treatments, the incidence of type
Medical Challenges of HIV
Medical Challenges of HIV
controlling blood glucose if you have diabetes. diaphragm contraceptive device II diabetes amongst people with HIV has significantly risen.
Your doctor is often able to diagnose pre-diabetes. If it • avoiding constipation where possible Insulin Resistance Independent of ageing, people with HIV are at increased
risk of type II diabetes. Factors associated with this risk are:
and Diabetes
is diagnosed, it is sort of like the last stop café: both a • practice good hygiene
warning and a great chance to make the lifestyle changes • being on the protease inhibitor class of drugs for
• going to the toilet as soon as you feel the urge to
you need to make in order to avoid progressing to treatment of HIV
urinate, rather than holding on Normally blood glucose is distributed to your body’s tissues
diabetes and all of the complications which follow from
under the control of insulin. Glucose is then used as ‘fuel’ • a higher prevalence of some of the risk factors for
diabetes. • emptying your bladder after sex.
to meet the energy required by your body. In some cases, diabetes amongst people with HIV.
Try to avoid urinary tract infections (UTIs), Getting kidney function monitored. this process is disturbed and more insulin is needed for
It has not been demonstrated that HIV itself and its
which can lead to kidney infection. the tissues to take up glucose from the blood. The tissues
Because kidney disease often doesn’t have symptoms, it associated changes to the body directly result in increased
are said to be ‘resistant’ to insulin, leading to a condition
Urinary tract infections do occur in men, but are much needs to be monitored on a regular basis—particularly if risk of diabetes.
called insulin resistance; which is more common with
more common in women, and may lead to kidney disease you have risk factors for kidney disease. increased abdominal fat, buffalo hump and in HIV-positive Preventing diabetes is important for people with HIV
if they keep recurring—especially if they are not treated. It is beyond the scope of this resource to provide detailed people on treatments. because it leads to increased risk of cardiovascular disease
Some suggestions for avoiding UTIs in men and women information on the treatment of advanced kidney disease. (for which people with HIV are already at increased risk)
Insulin resistance can lead to diabetes, a condition where
include: More detailed information can be found at Kidney Health and in the longer term is associated with the development
blood glucose becomes quite high.
• drinking lots of water and other fluids to flush the Australia www.kidney.org.au. of a number of diabetes-related conditions.
The incidence of type II, or mature onset, diabetes
urinary system
increases with age. As a result, as people with HIV live
• treat vaginal infections quickly (such as Thrush or
Trichomonas)
46 47What can you do? • indigenous, asian, indian background Know and implement the essential What can you do?
Medical Challenges of HIV
Medical Challenges of HIV
• blood fat changes (low levels of HDL or high levels of elements to preventing pre-diabetes
triglycerides).
Have your risk of diabetes regularly progressing to diabetes Diet, exercise, and
Your doctor will assess your risk by a history and by regular
monitored by your GP in conjunction Follow a healthy diet: for diabetes prevention this means smoking cessation
glucose tolerance tests.
with your HIV doctor reduced fat intake and eating a wide range of high fibre • Exercise at moderate-intensity exercise for 2.5 hours
Factors associated with increased risk of diabetes are: If you get diagnosed with foods that have a low ‘glycemic index’ (see www.healthinsite. per week (if approved by their clinician). Both aerobic
gov.au/topics/Glycaemic_Index for further information). and strength training activities are beneficial
• use of protease inhibitors “pre-diabetes” then it is time to act
A pre-diabetes diagnosis is the perfect time to seek help • Strive to maintain a healthy weight with a diet that
• severe changes to body fat distribution Pre-diabetes is where you have an impaired glucose
from an experienced dietitian to develop a meal plan that limits saturated fats, concentrated sweets, and
tolerance test result, the levels are higher than normal but
• hepatitis C infection will work for you. alcohol. Individualised nutritional plans can be made in
not high enough to be diagnosed as diabetes.
Exercise regularly: either 30 minutes of moderate intensity conjunction with a registered dietician
• age >45 years
• without intervention or change, pre-diabetes will
exercise (brisk walking) at least five days per week, or three • Smoking cessation is crucial to reduce the risk of
• being overweight (Body Mass Index >25 kg/m²) eventually become diabetes
to four 20-minute sessions of vigorous exercise a week. diabetic complications, especially cardiovascular disease.
• having a waist measurement > 94cm for men & > • by acting now you can prevent or significantly delay
80cm for women pre-diabetes becoming diabetes Living with Monitoring blood glucose levels
•
•
physical inactivity
a close relative who has diabetes
• a diagnosis of pre-diabetes may also lead to your
doctor recommending you change your HIV Diabetes & HIV • Diabetics on insulin therapy are typically advised to
check their blood glucose at least three times a day.
medications. While diabetes treatment involves physicians, nurses, Blood glucose should be between 4 and 7 mM/L
• a previously diagnosed metabolic disturbance before meals and no more than 7.8mM/L one to two
dieticians, and other health care professionals, self-care
• a history of vascular disease is crucial for managing diabetes. Good self-care includes hours after meals
diet, exercise, monitoring, and medications.
48 49• Home blood glucose monitoring may also help • Yearly blood and urine tests to check kidney function
Additional yeast attachment and growth, and also interfere with
Medical Challenges of HIV
Medical Challenges of HIV
diabetics who are not on insulin therapy achieve are recommended, and eye exams to evaluate immune responses in the host.
their blood sugar goals, but the optimal frequency of
monitoring is not known
diabetic retinopathy and simple clinical tests for nerve
damage (especially in the lower limbs) should also be Considerations First-line treatment typically involves creams or ointments
that are applied directly to the affected areas. Oral
• Home blood glucose monitoring should be used in
conjunction with the haemoglobin A1C test (glycated
performed annually
• Monitor for symptoms of hyperglycemia (high blood
for Diabetic Women treatments are also available but may have interactions
with oral medications for diabetes; consultation with
haemoglobin), which measures the average blood sugar) which include feeling tired; blurred vision; Blood glucose control and the a primary care provider is advised. Whether an oral or
glucose over the past 10–12 weeks. The goal for frequent urination; excessive thirst; and unintentional topical medication is chosen, treatment must include
diabetics is an A1C lower than 7%; however this may weight loss
menstrual cycle achieving optimal blood glucose control.
need to be higher for some people including children Some diabetic women have decreased insulin sensitivity
• Monitor for symptoms of hypoglycemia (low blood
and the elderly. Your doctor or diabetes educator can around the time of menstruation, which may lead to
sugar) which include weakness; trembling or shaking;
help you decide on a target that is both appropriate difficulty with glucose control; more intensive monitoring
sweating; light headedness; headache; dizziness; lack
and realistic for your individual circumstances may be needed.
of concentration/behaviour change; tearful/crying;
• In addition to blood glucose monitoring, diabetics irritability; hunger; numbness around the lips and
should have regular cholesterol and blood pressure fingers
Management of yeast infections
checks. Yeast infections are very common, with about three-
• Because diabetes increases the risk of foot infections
quarters of all women having one at least once in their
and ulcers, diabetics are advised to check their feet
Monitoring for diabetes daily for any signs of injury or infection. (The primary
lives. Symptoms include vaginal itching and thick, white
vaginal discharge.
complications care provider should also examine a diabetic client’s
feet at every visit.) Feet should be carefully washed Diabetes, especially poorly controlled diabetes, is a risk
• May include an electrocardiogram (ECG) or a stress
and dried daily, and socks and supportive footwear are factor for yeast infections; i.e. high glucose levels promote
test to check for cardiovascular complications, based
highly recommended. Trimming toenails straight across
on individual risk factors and symptoms
the tops of the nails can help prevent infections.
50 51Menopause unclear whether this difference is due to HIV, or because As menopause completes there are several changes
Medical Challenges of HIV
Medical Challenges of HIV
the other factors associated with earlier menopause (such that occur:
Menopause is often called the “change of life” and as drug use or lower body weight) is more common in
• skin changes (becomes more firm and drier)
usually happens in women between 38 and 58 years of women with HIV. Further, there was a small proportion of
women with HIV in these studies who did not menstruate • cognitive changes (thinking and understanding)
age. It is a slow and gradual process that can occur over
three to five years while the ovaries slowly stop producing for over 12 months but still had fully functioning ovaries. • hair changes (it becomes thinner and more brittle)
estrogen. This beginning phase is called peri-menopause, Women with HIV more commonly have irregularities • you are at increased risk of bone loss (osteoporosis)
where periods become less frequent and some other in their menstrual cycle that may be mistaken for and cardiovascular disease.
menopausal signs can appear. menopause. Further, the symptoms of menopause are
Menopause is considered complete when you have not often hard to distinguish between other symptoms
menstruated for 12 months. This marks the end of your associated with long term HIV infection.
fertility and is accompanied by significant hormonal Common symptoms of menopause include:
changes.
• hot flushes and night sweats
P rior to the advent of effective anti-HIV treatments,
• crawling or itching sensations under the skin
women with HIV reported getting menopause at an
earlier age, and having a greater incidence and severity of • vaginal dryness and thinning of the vaginal walls
associated symptoms. • reduced libido (sex drive)
Since treatments, there is less difference in the experience • urinary frequency or accidental urination
of menopause between HIV and non-HIV infected
women, although some studies show the average age • tiredness & fatigue
of menopause remains younger in women with HIV. It is • insomnia (difficulty sleeping)
• mood changes (irritability, forgetfulness, depression).
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