Download information - Lanarkshire Sexual Health

Produced in association with Terrence Higgins Trust Scotland
This edition published October 2008
Introduction
What is the LHAHC?
Will my information be kept confidential?
Coping with my diagnosis
HIV and your immune system
What is HIV?
Diagram: HIV life cycle
Stages of HIV infection
A bit more about AIDS
What is HIV going to do to me?
Will I pass on my infection to partner or friends?
Post Exposure Prophylaxis (PEP)
What about previous partners?
Monitoring your HIV in the clinic
CD4 counts
HIV viral load
Haematology; biochemistry; microbiology and virology
Other tests: viral resistance; therapeutic drug level monitoring
How do I get to know about my test results?
A short guide to staying healthy
General; exercise; stopping smoking
Weight; blood pressure; blood lipids
Healthy diet
Drugs and alcohol; sleep; stress
Sexual health; sexually transmitted infections
Mental health
Are there any things I cannot do, or should avoid?
Work
Driving; tatoos and body piercing
Animals; unfiltered water
People with chickenpox; raw meat, eggs, seafood
Vaccinations
Antibiotic prophylaxis: Septrin and other drugs
Co-infection with hepatitis B and / or hepatitis C
HIV treatment - The principles
Diagram: HIV life cycle and sites of action of drugs in CD4 cell
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Combination therapy
Which drugs are currently available in the UK?
Adherence and viral resistance
Main advantages and disadvantages of treatment
Table: HIV diagnoses and AIDS deaths in Scotland
What are the main side effects of treatment?
Lipodystrophy
What about food and drug interactions
What about ‘alternative’ therapies?
HIV treatment – your therapy
When should I start treatment?
Which regime should I choose?
What will starting treatment be like?
Does it matter if I miss a few tablets now and then?
Table: Adherence and treatment success
Help with adherence
What should I do if I miss a dose of my medication?
What if I think I am having treatment side effects?
What about drug interactions?
Can I have some more information?
My current drugs
Pregnancy, childbirth and breastfeeding
Should I plan a family while living with HIV?
Other issues for women: periods; cervical dysplasia
and cervical screening
Contraception; STIs and pelvic inflammatory disease;
viral load and other blood test results
Insurance and mortgages
HIV and travel
Sources of further information
Contacting us: counselling, general advice; medical problems
Contacting us: weekdays; weekends and out-of-hours
Pharmacy advice; Patient Advice and Liaison Service (PALS)
Useful telephone numbers
Acknowledgements
Space for names and numbers
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Introduction
The Folder is intended as a brief guide to HIV and its
treatment. It is for people who have been diagnosed HIV
positive and who are attending the Lanarkshire HIV, AIDS and
Hepatitis Centre (LHAHC).
HIV infection and its treatment are complicated areas and
new advances are being made all the time. This brief guide
cannot therefore cover all the questions that you may have in
relation to your HIV infection and its treatment.
However, we do hope that The Folder answers some of your
more important questions and allows you to keep some useful
information (including telephone numbers etc) in a
convenient place.
2
What is the Lanarkshire HIV, AIDS and Hepatitis Centre
(LHAHC)?
The LHAHC is Lanarkshire’s centre for the treatment and care
of people infected with HIV or other blood-borne viruses
(BBVs) such as Hepatitis B (HBV) or Hepatitis C (HCV).
As it’s not uncommon for people to be infected with more
than one virus, it makes sense to have a centre that combines
the prevention and treatment aspects of all three. The LHAHC
provides a confidential service offering support and treatment
from a variety of professionals including consultants,
specialist nurses, pharmacists and dieticians.
3
Will my information be kept confidential?
Yes - the need for confidentiality is an issue that we are well
aware of. We always offer fully confidential HIV and
Hepatitis testing.
Like similar units in the UK most of our tests are performed
on a ‘named patient’ basis but anonymous testing is also
available if requested. If your test result indicates you are
HIV positive, you will be referred to the clinical team for
further assessment. We will then need to keep medical
records, but these will also remain fully confidential. These
case-notes are stored within the LHAHC rather than the main
medical records department.
We encourage all patients with HIV or other blood borne
viruses to let their GP know about their diagnosis, and to
allow us to correspond with their GP. However, if you’d
prefer us not to, we will respect this.
4
Coping with your diagnosis
Receiving an HIV positive test result can be devastating.
Whilst some people may have believed they have had HIV for
a while before having a test, for many others the diagnosis
will come as a complete surprise. For some, the initial
reaction is to assume ‘my life is over’, but it is not. HIV can
be managed effectively with powerful drugs; it is treatable
but not curable. The effectiveness of these new treatments
has caused a huge drop in AIDS cases (see ‘What is HIV’ page
6) and in HIV-related deaths.
Although you should not assume the worst when you are
diagnosed with HIV, you probably still will. Frustration, anger,
a sense of unfairness, depression, anxiety, guilt and a lack of
will to ‘carry on’ are all common emotions. Like coping with
the death of someone you are close to, these emotions will
gradually start to get easier with time.
However, you are likely to require a lot of support to help you
through the initial phase. Circumstances vary, but most
people are able to choose at least one or two close friends or
relatives whom they can trust enough to turn to for support.
You’re not alone; staff at the LHAHC are here to help you
through this phase.
5
Please don’t hesitate to contact us outside arranged
appointments if you need somebody to talk to. This includes
asking your doctor, nurse or pharmacist to explain anything
you don’t understand, and asking for written information if
you still have questions or uncertainties.
HIV and your immune system
What is HIV?
HIV is short for Human Immunodeficiency Virus. It damages
the body’s defences (called the immune system). HIV is the
virus that can lead to AIDS.
Viruses are tiny organisms that cause disease. HIV infects a
type of white blood cell known as a CD4+ cell (or helper T
cell) and makes copies of itself in these cells. CD4+ cells
co-ordinate the body’s immune response to an infection. By
infecting and destroying CD4+ cells, HIV gets control of the
body’s immune system and instead of fighting disease, it
spreads it.
An infected CD4+ cell becomes an HIV factory that makes
more and more copies of itself that infect more and more
CD4+ cells so HIV slowly damages your immune system so
much that it is unable to fight off not just HIV, but any other
infection.
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HIV Life Cycle
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The four stages of HIV infection
Primary HIV infection (PHI). Also known as ‘seroconversion’
Most people who become infected with HIV do not
immediately notice that they have been infected. The
immune system begins to respond to HIV by producing HIV
antibodies. Some people have a short illness after infection
(sore throat, a fever, a rash or rarely a more serious illness)
and this is known as seroconversion illness or primary HIV
infection (PHI).
Asymptomatic infection. Also known as ‘Stage A’
Initially, any damage caused by HIV may have no outward
effect. This period is called asymptomatic infection (infection
without symptoms) which may last for many years.
Symptomatic infection. Also known as ‘Stage B’
Studies have shown that as time passes, damage to your
immune system will gradually become more significant.
Problems such as oral thrush or recurrent cold sores may
occur.
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Advanced disease (AIDS). Also known as ‘Stage C’ or
advanced HIV
Advanced disease (AIDS) is the stage at which serious damage
has been done to the immune system. Since people can often
recover from this damage when they receive effective HIV
treatment, the clinical / medical difference between having
HIV and having AIDS is less important now than it once was.
Nevertheless, advanced HIV should be avoided if at all
possible. We try to prevent advanced HIV from occurring by
diagnosing HIV as early as possible and trying to ensure that
HIV treatment is commenced before this stage develops.
A bit more about AIDS
AIDS stands for Acquired Immune Deficiency Syndrome.
People don’t catch AIDS, but they catch HIV, which can lead
to AIDS. A person is said to have AIDS when their immune
system is so badly damaged by HIV that it can no longer fight
off a range of diseases that it could normally cope with.
The illnesses that affect people with AIDS are various unusual
infections or certain forms of cancer. These unusual
infections are called ‘opportunistic infections’ because HIV
weakens the immune system giving them the opportunity to
take hold. If an opportunistic infection is diagnosed and
treated then followed by HIV treatment, immune systems
generally still recover well.
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What is HIV going to do to me?
In the short-term, probably very little. If you are otherwise
well then the most important immediate issue is to find ways
to cope with the stress and anxiety of your diagnosis and to
get on with the rest of your life.
The damage to your immune system is rarely severe enough
to be too much of a problem soon after infection. Indeed, in
early infection the immune system is very active in fighting
the HIV virus itself. However, as the months and years pass,
the virus causes increasingly severe damage to the immune
system. If left untreated, this will eventually result in
symptomatic HIV infection (‘Stage B’) and finally advanced
HIV infection (‘Stage C’ or AIDS) as described earlier. The rate
at which this immune decline occurs varies from one person
to another. It will be monitored at the clinic.
Fortunately, we now have the ability to make a major impact
on how HIV works against the immune system by starting
anti-HIV drugs (‘anti retroviral therapy’) before dangerously
severe immune damage can happen. So even if you do have
fairly advanced disease at the time of diagnosis, the
treatments now available are still powerful enough to
markedly improve the function of your immune system.
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Will I pass the infection onto my partner or friends?
Simple contact (touching, sharing cups, kissing) will not pass
the virus on. However, unprotected sex (including oral sex),
breastfeeding and sharing equipment for injecting drug use
are all high risk for transmission of HIV to others. Sharing
items such as toothbrushes and razors, which could become
contaminated with blood, are also potential risks.
It is important that you take all appropriate measures to
ensure that you do not pass HIV on to anybody else – indeed,
you could now face criminal charges if you do not. For more
information, speak to your consultant or contact Terrence
Higgins Trust (contact details on page 74).
Condoms (or femidoms) are the only way to ensure you do
not pass your infection on to your partner(s) through sex.
Different types of free condoms and lubricant are always
available at the LHAHC - the clinic staff are happy to discuss
the different types, and how to use them correctly.
Post Exposure Prophylaxis (PEP)
PEP is a treatment that may prevent a person becoming
infected with HIV after the virus has got into their body. It
must be started within 72 hours after unsafe sex or a
condom not working. It means taking anti-HIV drugs for 4
weeks, and it’s not guaranteed to work. PEP is available from
sexual health clinics (GUM), hospital A&E departments or
your HIV clinic. Please ask for more information.
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What about previous partners?
HIV is not a ‘notifiable disease’ and there is no legal
obligation for us to contact any previous partners. However,
we would strongly encourage you to contact any previous
sexual partners as far as possible. You can do this either
yourself or anonymously through the LHAHC, so that
everyone who has potentially been at risk of infection can be
offered a test.
We would never contact anyone without your permission –
unless you were putting him / her at risk (this has never
happened yet). There is rarely a great rush about the decision
to test previous partners – it can usually wait for some weeks
and be sorted out when you have managed to get to grips
with your own concerns in relation to your HIV diagnosis.
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Monitoring your HIV in the clinic
When you are first diagnosed, you may well have to make
quite frequent visits to us. This would generally be for
support, unless there are any particular medical problems.
After this, you would typically come to the clinic for review
every 3-4 months. The 3-4 monthly clinic interval also
applies to patients who are stable on their HIV treatment,
although a few extra visits may be needed around the time of
starting or changing treatment.
When you attend the clinic you will see a doctor (usually a
consultant) and one of the nursing staff. A pharmacist is also
available, and we can arrange for dieticians and other health
staff to see you depending on your needs.
We will monitor your clinical status and perform blood tests
at your clinic visits. Some of the important blood tests that
we typically perform are listed on the next few pages.
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CD4 counts
The CD4+ count is a measure of the concentration of CD4+ or
‘helper T cells’ present in your blood.
It gives a sign as to how well your immune system is working.
In general terms, the higher the CD4+ count, the better your
immune system is working.
The CD4+ count is a good guide as to when we need to start
thinking about prophylactic (protective) antibiotics, when HIV
treatment may need to be started, and when existing HIV
treatment may need to be changed.
Please remember that individual readings may vary
considerably for various reasons – for example a simple illness
such as a common cold can drop your count substantially. In
fact the count can go up and down in response to infections,
stress, exercise and time of day. So don’t get too hung up on
individual CD4+ counts: it is the overall CD4+ count trend
that is important.
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HIV viral load
Your viral load is a measure of the amount of HIV present in
your blood. The more HIV in your blood, the higher the viral
load. The result is given as the number of ‘copies’ of HIV per
cubic centimetre of blood.
The goal of anti-HIV therapy is to reduce viral load levels so
that they are undetectable. Even if your viral load does
become undetectable, this does not mean that the virus has
been eradicated from your body, but rather that its level has
been greatly reduced.
Achieving an ‘undetectable’ level gives the virus the least
chance of becoming resistant to the drugs you are taking, and
therefore gives your drug regime the best chance of long term
success. Your bloods are usually sent to the regional virus
laboratory in Glasgow where HIV viral load tests are
performed. Results usually take two to three weeks to come
back.
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Haematology
This is just a check of your haemoglobin (to make sure you’re
not anaemic), white cell count and platelet count. Living
with HIV, or your HIV medication, can affect these.
Biochemistry
This includes tests such as liver and kidney function tests, as
well as blood lipid (cholesterol and triglyceride) tests. The
latter are particularly important when you are on treatment
as HIV therapy can cause raised lipids. Blood lipids should
really be measured first thing in the morning before
breakfast. In practice, we often find that we have to do
‘random’ lipid estimates due to the timing of our clinic and
your own commitments. If the random lipids are raised,
however, we will generally ask you to come back for a
‘fasting’ lipid estimation (where you don’t eat before the tests
are done.
Microbiology and virology
We do various other checks on blood samples routinely for
other infections such as hepatitis B, hepatitis C,
cytomegalovirus, toxoplasmosis and syphilis. Urine samples
may also be tested for urinary tract infections, including
chlamydia and gonorrhoea.
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Other tests
Viral resistance tests
In some situations, such as suspected treatment failure due to
the results of a ‘viral load’ test, we may send a sample to a
specialist laboratory for tests to determine the resistance
pattern of your HIV. These results often take several weeks or
more to come back – and are not always easy to interpret
when they do.
Therapeutic drug level monitoring (TDM)
The correct dose of an HIV drug is not always easy to
determine. Different people’s bodies handle HIV drugs in
different ways, and the effects of HIV drugs can also make
matters more complicated. It may therefore be necessary to
measure the levels of drug in your blood. These tests are then
sent to a laboratory in Liverpool for analysis. Again, results
typically take a while to come back.
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How do I get to know about my test results?
We have a policy of not sending out test results to either
patients or their GPs. This policy is principally aimed at
reducing the chances of breaching your confidentiality (eg if
the letter goes to the wrong address or the wrong person
opens the letter).
We will contact you if something needs to be done in
response to your test results before your next appointment
(during which we will, of course, go through the results with
you), and you can generally assume that no news is good
news.
If you do want to get your results before your next
appointment then you can drop in or call the LHAHC.
Naturally, you will be asked for some form of identification
on the telephone.
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A short guide to staying healthy
General
Just because you are HIV positive doesn’t mean you can
afford to ignore the usual advice about healthy lifestyles –
you actually need to give your body the best possible
opportunity to stay healthy for many years to come.
Important issues include:
Exercise
Regular physical exercise has beneficial effects on blood
pressure and reduces the risk of heart disease. You will
probably also find that it helps with stress, sleeping
difficulties and mood problems. Exercise may also have a role
in combating lipodystrophy (see ‘What is lipodystrophy’ page
46).
Smoking cessation
Often difficult, but important. Stopping smoking will reduce
the risk of heart disease and other illnesses: particularly
important if you are on certain HIV treatments that may
cause a rise in cholesterol. If you wish, we can arrange for
you to see our smoking cessation coordinator.
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Weight control
Whilst some patients with HIV may have problems with
excessive weight loss, excessive weight gain is more common
these days. This is relevant in respect of heart disease and
other diseases such as diabetes. Central to weight control are
a sensible diet and regular physical exercise.
Blood pressure control
It is important to control blood pressure to lower the risk of
heart disease and other problems. Exercise, weight control,
avoiding salt and taking regular physical exercise all help to
control blood pressure. Blood pressure medicines are also
sometimes required. We will monitor your blood pressure
when you attend clinic.
Blood lipids (cholesterol and triglycerides)
Lanarkshire has a poor record when it comes to heart disease.
Unfortunately some drugs used in treating HIV can have an
adverse effect on cholesterol which causes heart disease. A
low fat diet and regular exercise are important. Drugs that
lower cholesterol may also be needed, particularly if you are
on HIV treatment. We will monitor your cholesterol levels in
clinic and can arrange appointments with a dietician if
needed.
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Healthy diet
A lot is written about diet – and much of it is confusing and
conflicting. In essence, a healthy diet is one that is not
excessive in terms of either calories or in any specific part of
the diet, particularly saturated fats.
Fried foods are usually rich in both saturated fats and
calories, so grilled or boiled foods are healthier. Furthermore,
you should ensure that your diet provides the essential
vitamins and minerals that your body needs. Fresh fruit and
vegetables are good sources of these.
If you are taking HIV medication, you may have to time your
meals with your medication times as some HIV drugs have to
be taken on an empty stomach, whilst others must be taken
on a full stomach. If you wish to see a dietician, we can
arrange this for you.
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Drugs and alcohol
Drugs and alcohol may be harmful to your body, particularly
if taken to excess. Some recreational drugs may adversely
affect your HIV treatment and there seem to be real risks in
taking ecstasy, ketamine, GHB, speed or crystal meth at the
same time as protease inhibitors. For more information,
contact Terrence Higgins Trust Scotland.
Sleep
Sleep is an important aspect of healthy living. Try to ensure
that you get an average of at least 8 hours per night.
Stress
Think about ways in which you can try to reduce the stressful
aspects of your life. This is often easier said than done – but
still worth a try. To help combat stress, a number of
organisations in Lanarkshire offer free complementary
therapies. Please ask the LHAHC staff for further information.
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Sexual Health
You should have a full sexual health screen at the time of
your HIV diagnosis. It is obviously crucial to practice ‘safer
sex’ (ie condoms / femidoms at all times – including oral sex)
once you have been diagnosed with HIV, to prevent passing
on HIV to others. Condoms will also greatly reduce your risk
of other sexually transmitted infections (STIs). Nevertheless,
it is sensible to have regular sexual health check-ups. We can
screen you for illnesses such as syphilis and chlamydia, and
also arrange a genitourinary medicine (GUM) appointment for
you. (Please also see ‘Other HIV issues for women’ page 64.)
Sexually transmitted infections (STIs)
There has been a sharp rise in the number of sexually
transmitted infections such as gonorrhoea, chlamydia and
syphilis in the UK in recent years. Other potential delights
include genital herpes, genital warts and pelvic inflammatory
disease. Thrush (Candida) infection is common in both men
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and women with HIV infection, but is not regarded as an STI
as such because it is really just an overgrowth of yeasts that
occur naturally in / on your body. You should tell us (or go
directly to a genitourinary medicine clinic [GUM clinic]) if you
have any of the following symptoms:
. Pain passing water
. Discharge from the penis, vagina or anus
. Pelvic pain or pain during intercourse
. Ulcers on your genitalia, anus or inside your mouth
. ‘Cold sores’ on your genitals or buttocks
. Genital warts
It is important to note that infections can be present without
producing any of the symptoms above, so this is why we
advise you to have a complete check-up for sexually
transmitted infections as part of your initial medical
assessment for HIV. Regular check-ups are advisable if your
sex life potentially puts you at ongoing risk of infections.
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Prevention is always better than cure. The use of barrier
contraceptives (condoms or femidoms) will greatly reduce the
risk of STI transmission – as well as reducing the risk of
transmitting HIV of course. There are good reasons to use
condoms even if you know that both you and your partner
have HIV: besides reducing the risk of transmitting
drug-resistant HIV, condoms will help prevent transmission of
the traditional STIs (as well as hepatitis B, hepatitis C and
cytomegalovirus).
Mental health
Coping with an HIV positive diagnosis is very tough. You are
likely to require a considerable amount of support before you
even start to come to terms with your diagnosis. Sometimes,
matters may deteriorate further despite counselling and it is
not uncommon for people to require a course of
anti-depressants. Help from the psychology or psychiatry
teams can also be very helpful in some situations. We can
arrange the appropriate referrals, if necessary.
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Are there any things that I cannot do or should avoid?
In general, there are few specific ‘don’ts’. You should aim to
get a balance between taking sensible precautions and not
letting HIV dominate your life. A few specific issues should
be raised. Many of these apply in particular to people with
advanced HIV where there is substantial damage to the
immune system. Relevant issues include:
Work
If you are a healthcare worker you will be subject to strict
guidelines regarding what you can and cannot do. Guidelines
on ‘exposure prone procedures’ have been published (you
should discuss this with your consultant occupational health
physician). Depending on your job, and the state of your
health, there may also be restrictions to non-healthcare
workers. This can be discussed with staff at the LHAHC.
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Driving
In general, there is not a problem with a standard driving
licence unless you have taken seizures or have visual
impairment or similar. There are restrictions on holding a
class 2 licence (HGV licence) if you have advanced HIV. You
will need to discuss this with the DVLA if you wish to keep
your class 2 entitlements.
Travel See ‘HIV and travel’ page 67.
Tattoos and body piercing
If you are considering having a tattoo or body piercing it
would be advisable to inform the tattoo artist or piercer of
your HIV status, to allow them to take extra precautions
against accidental HIV transmission.
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Animals
Cats, particularly kittens, may be infected with toxoplasmosis.
They can pass the eggs in their faeces (poo) that can in turn
infect you. Although such infection is usually asymptomatic
(no signs of infection), toxoplasmosis can ‘reactivate’ and can
cause serious disease in people with advanced HIV. Avoiding
cats and cat litter is sensible. Farm animals such as lambs
frequently carry cryptosporidiosis which can cause severe,
prolonged diarrhoea in people with advanced HIV disease.
Avoid farm animals, and wash your hands very carefully after
touching any animal.
Unfiltered water
Again, this relates to the risk of cryptosporidiosis in people
with advanced HIV disease. There are differing views about
boiling / filtering suspect water prior to use - if in doubt,
drink bottled water or boil it before use.
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People with chickenpox
Avoid in general, and avoid like the plague if you have never
had chickenpox yourself! If you are exposed to someone with
chickenpox, and cannot recall having had chickenpox
yourself, then contact us as soon as possible: you are likely to
need vaccination.
Raw meat, raw eggs and raw seafood
These are potential sources of various infections, including
toxoplasmosis, hepatitis A and gastrointestinal infections
(tummy bugs). It’s advisable to avoid them.
Vaccinations
It is sensible to ensure that you have had all of the usual
childhood vaccinations. There are some further vaccinations
that are generally recommended for people infected with HIV.
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Vaccine
Details
Influenza (flu) vaccine
Given every year in the autumn.
The LHAHC or your GP can give
you this.
Helps prevent infection with the
common pneumonia bug, the
Pneumococcus. Works best if
CD4>200 and/or on HAART.
You can get this vaccine from us
or from your GP. May need
booster after 5-10 years.
3 or 4 doses give long term
protection. We would normally
provide this. Boosters may be
required.
Recommended for some, but not
all, people with HIV. 2 doses
provide protection for 10 years.
Pneumococcal vaccine
Hepatitis B (HBV) vaccine
Hepatitis A (HAV) vaccine
Please note that you will need to avoid certain ‘live’ vaccines
such as the BCG vaccine (for tuberculosis) and certain ‘live’
travel vaccines (see ‘HIV and travel’ page 67).
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Antibiotic prophylaxis: Septrin (co-trimoxazole) and other
drugs
If you have been living with HIV for some time, your immune
system may already have suffered substantial damage.
If you were unwell at the time that your HIV diagnosis was
made, for example with pneumonia, then the main immediate
priority would have been to treat the pneumonia (rather than
the HIV virus).
If you were well at the time of diagnosis, but your blood tests
still indicated that you were at high risk of infection, we
would generally recommend that you start on low-dose
antibiotics as ‘prophylaxis’ (prevention) against becoming
unwell. In general, this will only apply if your CD4+ count is
less than 250 (apart from TB prophylaxis). Once you start HIV
treatment, and your CD4 count stays above 200 for a period
of six months, you may well be able to stop these
prophylactic antibiotics.
The most common form of prophylaxis is against
Pneumocystis pneumonia (PCP) using Septrin or Dapsone, but
other forms of prophylaxis are detailed on the next page.
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Disease
CD4+ count
where the
disease occurs
Antibiotics used for
prophylaxis
(prevention)
Pneumocystis
Jiroveci
Pneumonia (PCP)
Less than 200,
or history of
oral thrush
Septrin
(co-trimoxazole);
dapsone +/pyrimethamine;
nebulized pentamidine
Toxoplasma gondii
Less than 100
and evidence of
past exposure
Septrin;
dapsone +
pyrimethamine
Mycobacterium
avium-complex
(MAC)
Less than 50
Azithromycin;
clarithromycin;
rifabutin
Tuberculosis (TB)
Not determined
by CD4 count
Isoniazid +/rifampicin
Cryptococcus
neoformans
Less than 50
Fluconazole:
itraconazole
Cytomegalovirus
Less than 50
and evidence of
past exposure
Valganciclovir
32
Co-infection with hepatitis B and / or hepatitis C
The assessment and treatment of hepatitis is quite a big area
in itself. What follows is really just a brief overview. We will
be happy to discuss these issues in more detail if they are
relevant to you.
Hepatitis B (HBV)
This is a virus that can be passed on in similar ways to HIV:
through unprotected sex, sharing injecting equipment, blood
transfusions and from mother to child. HBV infection can
cause an acute illness in which jaundice (yellowing of the
skin and eyes) is the prominent feature. Usually HBV
infection will go away by itself, but it can also result in a
long-term ‘chronic’ infection in which significant liver
damage may develop over a number of years.
The good news about HBV is that it’s easy to protect yourself
against it by immunisation – a course of 3-4 doses is all it
takes.
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Hepatitis C (HCV)
HCV is transmitted in a similar way to HBV. HCV can be
transmitted sexually particularly if you are HIV positive. HCV
is usually a silent virus (no symptoms). Often people don’t
know they have it until they are tested. 80% of people who
have HCV will go on to have long-term infection. This can, in
some cases, progress to severe liver damage and cirrhosis over
time.
What happens if I am co-infected?
If you are unlucky and are co-infected with HIV and HBV
and / or HCV then the first thing you need to do is to
minimise any ongoing damage to your liver, so keeping your
alcohol intake to a minimum is essential. You may also be
more prone to liver-related side effects from HIV drugs, so we
will need to monitor you carefully for this.
The question of treatment for hepatitis, as well as for HIV, is a
rather complex area but treatments are available for both
HBV and HCV although a cure is not guaranteed.
34
HIV treatment – the principles
HIV therapy with a combination of drugs is known as HAART:
Highly Active Anti-Retroviral Therapy or ART/ARV: AntiRetroviral Therapy. It is called ‘Anti-Retroviral’ as the HIV
virus belongs to a family of viruses known as ‘retroviruses’.
.
HIV drugs are generally classed according to the way they
stop the virus. HIV needs certain key enzymes to be able to
reproduce. There are six main types of drugs used to combat
HIV:
Nucleoside analogue reverse transcriptase inhibitors
(NRTIs), which target an HIV protein called ‘reverse
transcriptase’
. Non-nucleoside reverse transcriptase inhibitors
(NNRTIs), which also target ‘reverse transcriptase’
. Nucleotide analogue reverse transcriptase inhibitors
(NtRTIs), which also target ‘reverse transcriptase’
. Protease inhibitors (PIs), which target protein called
‘protease’
. Entry inhibitors (these include ‘fusion inhibitors’ and
. Integrase inhibitors are a new class of drugs that
‘CCR5 antagonists’), which target the point when HIV
gains entry to the CD4+ cells.
target a protein called integrase.
35
HIV lifecycle and sites of action of drugs in CD4 cell
Key to drugs
FI
RTI
PI
Fusion Inhibitors
Reverse Transcriptase Inhibitors
(NRTIs and NNRTIs)
Protease Inhibitors
36
Combination therapy
Combination therapy (or HAART) generally involves using 3 or
more drugs together which add to the power of the regime
(suppressing HIV and restoring the immune system more
effectively) as well as reducing the chances of viral resistance
developing (please see ‘Adherence and Viral Resistance’ page
41). HAART aims to suppress the HIV to undetectable
levels in the blood.
Quite a wide variety of combination regimes are in use. There
are some wrong ways of combining the HIV drugs, but no
single right way: treatment is individualised to suit individual
patients and their particular lifestyle and medical history.
Some typical examples of initial combination regimes would
be:
. 2 NRTIs / NtRTIs plus 1 PI
. 2 NRTIs / NtRTIs plus 1 NNRTI
The PI Ritonavir requires a special mention, as it is usually
given in small doses, to ‘boost’ the drug levels of another PI
rather than as an HIV drug in its own right.
37
Which drugs are currently available in the UK?
The good news is that there are now lots of drugs available
for HIV therapy. Furthermore, this area is changing quite
rapidly as new drugs come out.
The tables on the following pages list the current drugs (as at
March 2008). Please note that all drugs will have both a
generic name and a trade name, and that various
abbreviations are in common use. Also, some are available
where 2 or 3 drugs have been included in 1 tablet.
38
Drug class
Nucleoside / nucleotide
reverse transcriptase
inhibitors (NRTIs)
Generic name
Trade name Abbrev
Zidovudine
Retrovir
ZDV; AZT
Didanosine
Videx
ddl
Emtricitabine
Emvitra
FTC
Lamivudine
Epivir
3-TC
Stavudine
Zerit
d4T
Abacavir
Ziagen
ABC
Tenofovir
Viread
TDF
Zidovudine + lamivudine
Combivir
Zidovudine + lamivudine
+ abacavir
Lamivudine + abacavir
Trizivir
Kivexa
Emtricitabine + tenofovir Truvada
Efavirenz + emtricitabine Atripla
+ tenofovir
39
Drug class
Generic name
Trade name Abbrev
Non-nucleoside reverse
transcriptase inhibitors
(NNRTIs)
Nevirapine
Efavirenz
Viramune
Sustiva
Etravirine
Intelence
Saquinavir
Invirase
Ritonavir
Norvir
Indinavir
Crixivan
Nelfinavir
Viracept
Lopinavir + ritonavir
Kaletra
Atazanavir
Reyataz
Tipranavir
Aptivus
Darunavir
Prezista
Fosamprenavir
Telzir
Fusion Inhibitors
Enfuvirtide
Fuzeon
CCR5 inhibitors
Maraviroc
Celsentri
Integrase Inhibitors
Raltegravir
Isentress
Protease inhibitors (PIs)
40
TMC125
T-20
.
.
.
Adherence and Viral Resistance
Adherence means ‘sticking with it’, and taking your
medication:
at the right times
at the right dose
strictly following any advice about food and drink
It’s important to make sure that enough of the anti-HIV
medicines are in your blood all the time to do their job
properly. Missed or late doses could mean there are reduced
levels of the drugs in your blood. This could allow the virus to
make more copies of itself, increasing your viral load.
If the virus makes copies of itself when there is a small
amount of the drug in your body, your HIV may develop
resistance to the drugs you are taking and others like them.
Drug resistant HIV could lead to the treatment not working,
you getting ill and / or having fewer treatment options in the
future.
Skipping even just a few doses will increase the risk of your
treatments failing you. This is why we will continue to nag
you to the point that we irritate you about the importance of
strict adherence to your drug regime.
41
What are the main advantages and disadvantages of treatment?
The main advantage of HAART is that it works! Indeed, it works
incredibly well: AIDS cases and deaths have dropped dramatically
across the world in countries that can afford to provide HAART to
people living with HIV.
HIV diagnoses and AIDS deaths in Scotland
600
number of people
500
400
300
200
100
0
HIV diagnoses
AIDS deaths
1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007
169 182 168 156 154 171 250 258 364 407 346 446
84
45
27
23
30
17
30
26
6
15
11
7
42
. The need to take medication regularly every day – you
cannot afford to miss any tablets
. Drug
side effects
. Potential
food restrictions
. Possible drug
interaction issues when used with other
. drugs
HIV may become resistant to the drugs after a while
However, no drug treatments are without their disadvantages
and this is certainly true with regard to HIV therapy. The
downsides of HAART include:
What are the main side effects of treatment?
Reading lists of potential drug side effects is a scary business.
If you studied all the potential side effects of many ‘safe’
over-the–counter medications such as Ibuprofen (or even
Aspirin) in detail, you might be forgiven for deciding never to
take a pill to relieve your headaches ever again! It is
therefore important to keep things in perspective - many
people experience few or no significant problems on starting
43
HIV treatment, and when people do get side effects these are
often fairly minor and settle after a few weeks.
Having said that, there is no denying that potentially serious
side effects can occur with HAART and people starting
treatment find the issue of side effects quite worrying. To
prepare you for any side effects you may experience, we have
listed some of the potential side effects.
The side effects that may occur depend on the actual drugs
that you are taking - please see ‘My current drugs’ page 61
for further information, or read the actual product literature
for a full review. We will of course monitor you for possible
side effects when you attend clinic.
44
Possible side effect
Comment
Nausea and diarrhoea
Common on starting treatment. Usually improves
after a week or two, although some drugs (eg
nelfinavir) may cause persistent loose stools
Can occur with all drugs, but particularly with the
NNRTIs
A form of allergic reaction. A particular concern
with the drug abacavir. However, we can now do
a special blood test to detect those who are most
at risk of this side effect
Drugs such as didanosine can occasionally cause
pancreatitis (inflammation of the pancreas gland
which results in upper abdominal pain and
vomiting)
Mood alteration (usually transient but sometimes
severe) and vivid dreams are common with
efavirenz. Some drugs (particularly some of the
NRTI drugs) may occasionally cause damage to
nerves in the arms and legs: pins and needles is
the usual first symptom
Can occur with all HIV drugs, particularly if there
is an underlying liver problem (eg alcohol or
hepatitis), but this is a particular problem with
nevirapine
Usually mild but can occasionally be severe.
Zidovudine (AZT) can cause this problem.
Non-specific rash
Hypersensitivity
reaction
Pancreatitis
Neurological effects
and mood
disturbance
Liver function test
abnormalities
Reduction in red cell
count (anaemia) and
white cell count
Raised blood lipids
(cholesterol and
triglycerides)
More common with some drugs (eg ritonavir) than
others. Needs to be monitored. Lipid lowering
therapy may be required. May occur alone or in
association with lipodystrophy
45
Possible side effect
Comment
Lipodystrophy
Abnormal body fat distribution or lipodystrophy is
discussed further under ‘What is lipodystrophy?’
Actual diabetes may occasionally occur
A potential side effect of the drug indinavir
This is something that also needs to be monitored
for, particularly if you are taking tenofovir
Raised blood sugar
Kidney stones
Kidney function
impairment
What is lipodystrophy?
Lipodystrophy is a term used to describe changes in body fat
distribution that may occur in people who receive HAART for
HIV infection. It can mean losing some fat from the face,
legs, arms or buttocks, or gaining fat elsewhere - usually
around your middle. These body fat distribution changes are
often linked to changes in blood lipids (cholesterol and
triglyceride) and sometimes with elevations in blood glucose
levels.
If we eat too much and put on weight, the fat will be just
below the skin - this is known as ‘subcutaneous’ fat. But the
fat gain from lipodystrophy is often ‘visceral’ fat, which
means it is deeper inside the body, around organs such as the
bowel or the liver. It can make the belly feel hard and taut.
46
It seems that some, but not all, anti-HIV drugs cause
lipodystrophy. Although our knowledge is still incomplete, it
makes sense to avoid those drugs that are associated with
problems. Problems with fat loss and fat gain have been
particularly noticed with two drugs from the NRTI (Nucleoside
or ‘nuke’) class of drugs:
d4T (brand name Zerit) – a major issue with this drug.
AZT (brand name Retrovir, also found in Combivir and Trizivir)
– may also cause lipodystrophy in some cases.
There may be more of a risk of fat loss and gain when these
drugs are combined with drugs from the protease inhibitor
(PI) class. But doctors are not sure of this and research is
continuing.
What happens if lipodystrophy does develop?
There is no single answer to this question. Regular exercise is
important, as is changing your diet and stopping smoking.
Treatment for elevated blood lipids and / or blood sugar levels
is also important. Often, but not always, it may be
appropriate to change to another drug regime. Various forms
of specific drug therapy to prevent the alteration of
fat-metabolism are under evaluation but there is no proof
that this works yet.
47
For many people, fat loss from the face is the most distressing
problem with lipodystrophy, as it affects the way we see
ourselves and others see us. ‘NuFill’ is a product that is
injected into the cheeks. It stimulates growth in the skin and
reconstructs the normal thickness and shape of the face. For
more information on ‘NuFill’, or other medical treatments for
lipodystrophy, please speak to your consultant or one of the
nursing staff.
What about food and drug interactions?
Food may alter the way many drugs are absorbed into the
body. Food may increase, decrease or have no effect on drug
absorption depending on the drug in question. It is important
to be clear about whether a drug needs to be taken on an
empty stomach or with food.
48
What about ‘alternative’ therapies?
The subject of ‘alternative’ therapy for HIV is a large and
rather confusing one. We don’t have the space in this folder
to go into this area in detail but many people consider these
types of treatment to be helpful.
We are generally in favour of certain therapies, such as
massage and aromatherapy. However, with regards to herbal
medications we would just sound a note of caution - do not
assume that just because a drug is ‘herbal’ it is necessarily
good for you - or even safe!
Some herbal medications (such as St John’s Wort and Milk
Thistle) can potentially have very serious interactions with
conventional anti-HIV drugs. Please speak to your consultant
or nursing staff if you are thinking of taking any alternative
therapies.
49
HIV treatment – your therapy
When should I start treatment?
Surprisingly enough, nobody really knows when the best time
to start treatment is: ‘not too early, but before it is too late’ is
the general principle. The guidelines have been evolving and
changing over recent years but we would recommend starting
HAART:
.
.
For people with symptomatic HIV disease (Stage B) or
AIDS (stage C)
For people with asymptomatic HIV infection and a CD4
count in the range 200-350. A rapidly falling CD4
count or a higher viral load would favour treatment
earlier rather than later.
Some people find starting therapy a difficult commitment to
make. Before starting combination therapy you should give
yourself time to talk though all your options. As well as your
doctor, you could speak to other people living with HIV and
workers at local HIV organisations. If there’s a friend or
family member who’s supportive, they may also help you
make your mind up.
50
There is rarely a great urgency to start therapy, so if you don’t
feel ready then delaying matters for a few weeks or even
months is usually possible. We would much prefer a delay in
starting treatment to a situation where you are on therapy
but you do not take all of your medication reliably.
Which regime should I choose?
This is another difficult question to answer. The most
suitable regime for you is likely to depend on a number of
different factors which the clinic staff will discuss with you,
including:
. The stage of your infection
. Whether or not you have experienced or suspected
virus
. drug-resistant
The ‘strength’ of the regime
. The
ease with which the regime can be taken – eg the
of tablets per day or the size of the tablets
. number
Any particular other medical problems that you have
. Any
medications that you need to take
. Yourother
. Your lifestyle
preferences
. Our preferences
51
In general, drug regimes have been getting easier to take over
the last few years. As far as possible we would aim to get
you started on a once or twice-daily regime, rather than 3
times per day. The total number of tablets that you take each
day will depend on the specific regime that you are
prescribed. 2–7 tablets a day would be typical for a first
regime these days.
What will starting treatment be like?
The first couple of weeks of treatment can be difficult
although this is certainly not always the case.
Firstly, you may not be used to taking medication as part of
your usual daily routine. Remembering to take your
medication regularly and on time, possibly with associated
food restrictions, is quite challenging for many people.
52
Secondly, the side effects of treatment are often at their
worst during the first couple of weeks. Nausea and diarrhoea
are common, but typically these settle with time (we can
provide you with anti-sickness and anti-diarrhoea
medications for this initial period if you need them). Various
other side effects can sometimes also occur during the first
few weeks.
Longer-term side effects can also occur. We will give you
further information about any particular concerns relating to
the specific drugs that you have been prescribed (see ‘My
current drugs’ page 61). If you still have further questions,
then ask us and / or refer to the product literature that comes
with your medication). Examples of potential side effects
would include possible hypersensitivity reactions with
abacavir, neuropsychiatric reactions with efavirenz and liver
abnormalities with nevirapine.
Despite all of these potential difficulties, many people have
virtually no side effects at all on starting therapy and are
surprised at how easy it is to take HIV medication. When
problems do arise, they are usually ‘teething difficulties’
which can be overcome quite easily.
53
However, if you do have ongoing problems and it becomes
clear that the regime that you are taking is really not
agreeing with you, or if any major side effects should arise,
then there is of course the option of changing to a different
regime.
We would strongly encourage you to ring up and tell us that
you are having difficulties with your medication rather than
just stopping it yourself or, worst of all, starting to take it just
now and again, when you feel up to it!
Does it matter if I miss a few tablets now and then?
A clear-cut answer from us at last: YES, YES, YES, YES!!!!!
It most certainly does matter - it matters a lot. Your
anti-retroviral drugs are only suppressing the virus, not
wiping it out. If you miss doses, the virus will no longer be
suppressed. This can lead to the virus becoming resistant to
your medication and treatment no longer working. The key to
long-term successful treatment is simple, if boring: TAKE ALL
OF YOUR MEDICATION AS PRESCRIBED ALL OF THE TIME.
The importance of strict adherence to therapy is illustrated on
the next page. This shows that the rate of treatment
failure increases dramatically when less than 95% of the
prescribed therapy is actually taken. You should aim for
100%.
54
Adherence and treatment success
100%
88%
90%
% patients with treatment success
80%
70%
60%
50%
45%
40%
30%
20%
29%
33%
70-80%
80-90%
18%
10%
0
>70%
90-95%
treatment adherence level (%)
55
>95%
Help with adherence
We hope that by explaining to you in detail why strict
adherence is so important for long-term treatment success
we will motivate you to aim for the 100% target. However,
taking medication regularly and without fail is difficult for
most people – we won’t pretend that it’s not.
Any barriers to adherence will depend to a certain extent on
your personal circumstances – for example your job. We will
discuss these issues with you in detail prior to you starting
therapy. We will also provide you with a written aid to help
you plan your medication and meal times, working around
any potential difficulties associated with your work and social
life as far as possible.
If you experience problems once you have started treatment,
then we are always here to support you. Memory aids such as
pillboxes can be helpful for some people.
It does help to think ahead to where problems with adherence
may arise. Times where you are not in your usual daily
routine are often the most dangerous ones: weekends,
holidays and working away from home can all be difficult
times for adherence. Try to plan ahead for these and always
ensure that you have an adequate supply of medication with
you!
56
What should I do if I do miss a dose of my medication?
As you will have gathered by now, missing doses of
medication regularly is something that you MUST AVOID as
far as possible to avoid drug resistance developing. However,
if you do miss a dose of medication you should follow the
advice below:
If you miss a single dose by a few hours then just take the
missed dose as soon as you can. Take your next dose at the
normal time.
If you have completely forgotten to take your medication and
only realise this when you come to take the next dose, there
is no additional benefit in taking a double dose.
What should I do if I think I am having treatment side
effects?
Give us a call. If you ring the secretaries at the LHAHC, they
will then contact one of the clinical team for advice and get
back to you. Often, the advice will be to come for an urgent
appointment so that we can go over matters in more detail.
(See ‘Who should I contact if I need help?’ page 71)
57
In general, we would ask you not to stop your medication
until you have spoken to, or seen us. This is because for
certain medicines we cannot restart therapy that has been
stopped as new side effects can occur (ie abacavir
hypersensitivity reactions). It is therefore important to make
a correct diagnosis before stopping any medication – we
wouldn’t wish to ‘lose’ an important drug just because you
have had an unrelated problem.
What about drug interactions?
Many HIV drugs have possible drug interactions, some of
which could potentially be very serious indeed. It is
important not to start any new medication (either prescribed
or over-the-counter) until this has been discussed with
somebody with experience of HIV drugs.
Viagra is on the list of drugs with significant interactions.
Please also note that HIV drugs can interact dangerously with
so-called recreational drugs such as diazepam, ecstasy, speed,
pethidine and methadone. They also interact (again,
potentially dangerously) with several herbal preparations,
including St Johns Wort, Milk Thistle (‘Silimarin’ or ‘Silibum’)
and Echinacea. Some safe drugs for common ailments are
listed on the next page.
58
Problem
Drug class
Safe drugs
Pain
Analgesics
Hay fever; itch
Anti-histamines
Aspirin, ibuprofen,
paracetamol
Cetirizine
Migraine
Anti-migraine
Sumtriptan
Anxiety
Anxiolytic
Oxazepam, Lorazepam
Sleep problems
Hypnotic
Temazepam
Nausea / vomiting
Anti-emetic
Heartburn / ulcers
Proton pump inhibitor
High blood lipids
Lipid lowering agents
Thrush
Antifungal
Metoclopramide,
domperidone
Seek advice – depends on
your HAART regime
Pravastatin, fenofibrate,
clofibrate
Fluconazole
Cold sores / herpes
Antiviral
Aciclovir
Please note that the list of unsafe drugs is much longer than
the ‘safe’ list above, although many drugs that do not appear
on the list above may be quite safe with certain HIV drugs; so
if in doubt ask us.
59
Can I have some more information regarding the drugs
that I am taking please?
Yes you can – we have enclosed a sheet containing the
essential information regarding each of the drugs that you
are taking on the next page. More detailed information is
provided in the product information that comes with the
medication (inside the box). For further information, your
best bet is probably to ask Kathleen MacArthur, our specialist
pharmacist - if she doesn’t know the answer to your question
then she will certainly know where to find the answer!
60
My current drugs
Please insert the sheets provided regarding the drugs that you
are currently taking here.
61
Pregnancy, childbirth and breastfeeding
The risk of a pregnant woman passing HIV on to her child is in
the region of 15–25 %. However, careful management can
reduce this risk of transmission reduced to less than 3%.
Infection can occur before birth by transmission through the
placenta, but more commonly occurs at the time of birth
itself or subsequently though breastfeeding.
To reduce the risk to as low a level as possible, a combined
strategy using anti-retroviral therapy for the pregnant
mother, caesarean section delivery (in most cases), antiretroviral therapy for the baby and avoidance of breastfeeding
is used.
The exact details of the best approach for reducing the risk of
transmission from mother to baby will depend on a number of
things - particularly the stage of HIV illness in the mother.
The need to give the mother effective treatment may need to
be balanced against a need to minimise the risk of potential
drug side effects in the baby. Concern about the possible
effects of HIV drugs on the baby means that pregnancy is the
only situation where HIV drugs are still sometimes given
alone, or perhaps using just 2 drugs, rather than the use of 3
drugs as in HAART. This concern about side effects applies
particularly in early pregnancy and to certain drugs more
than others.
62
Should I plan to have a family if I am living with HIV?
This is a difficult question - more and more women living
with HIV are now having children and the overall experience
is positive. The risk of HIV transmission can certainly be
reduced greatly by medical management. However, there is
much more to consider than simply whether or not the child
will be HIV-infected or suffer side effects from HIV drugs:
your own current and future health, and that of your partner
are important considerations.
If you are a woman living with HIV and feel that you wish to
plan for a baby then we would strongly urge you to discuss
this with us before you get pregnant. The question about
which – if any – HIV drugs you should be taking at the time
that you get pregnant needs careful consideration. If you are
a man living with HIV, but with an HIV-negative female
partner, then a technique called ‘sperm-washing’ may be an
option – but this is a very specialised technique (we cannot
offer this in Lanarkshire currently).
63
Other HIV issues for women
There are a number of particular issues relevant to women
living with HIV that should be mentioned.
Periods
Menstrual irregularity in general is probably more common if
you are living with HIV. If you are living with advanced HIV
disease, then your periods may stop altogether for a while
(‘amenorrhoea’) – this also occurs in many other serious
illnesses. We can arrange for you to see a gynaecologist if
you are having problems with your periods. Do remember
that menstrual blood is a ‘high risk’ body fluid with regards to
its potential to transmit HIV.
Cervical dysplasia and cervical screening
Abnormal cervical smear results (cervical dysplasia) are more
common in women living with HIV. These abnormalities can
progress to the pre-cancerous condition of ‘cervical
intraepithelial neoplasia’ (CIN). If CIN is not detected and
dealt with (usually by colposcopy and laser treatment),
cervical cancer may eventually occur. It is therefore
recommended that women living with HIV have a cervical
smear every year (rather than the usual 3-yearly smears). As
far as possible, we would encourage you to have your smears
performed via your GP practice in the usual way. However, if
you are unhappy about this then speak to us - we can sort
out an alternative arrangement.
64
Contraception
Be aware that the oral contraceptive pill (The Pill) interacts
with many HIV medications so that they may not work
properly. Furthermore, it will not protect against the
transmission of HIV from an HIV positive to an HIV negative
partner, or the transmission of resistant HIV strains where
both partners are HIV positive, as well as viral hepatitis or
other sexually transmitted infections (eg gonorrhoea,
chlamydia, syphilis, warts). Barrier contraception – condoms
or femidoms – are therefore crucial. We can provide you with
a variety of free condoms or femidoms – as many as you need!
Sexually transmitted infections and pelvic inflammatory
disease
Infections such as chlamydia are more commonly
asymptomatic in women than in men (see ‘Sexually
transmitted infections’ page 23). These infections are known
to cause pelvic inflammatory disease.
Viral load and other blood test results
There may be difference in the relationship between HIV viral
load, CD4 counts and disease stage between men and women.
However, at present there is no suggestion that these
differences are important enough to mean that we have to
interpret test results differently in men and women.
65
Insurance and mortgages
The association of British Insurers has recommended that
insurance companies should not seek information about
negative HIV test results any longer. Nobody should therefore
be penalised for having had an HIV test where the test result
has come back negative. Unfortunately, if you have tested
positive for HIV then this will have implications for many
forms of insurance as well as other financial products such as
mortgages.
Companies differ in their approach. Some companies may not
offer insurance and certain financial products to people living
with HIV at all. Other companies will still offer policies, but
you may have to fulfil certain criteria. You will probably also
find that the premium is weighted (ie more expensive) if you
are living with HIV. If you have any questions in this area
then ask us for help – we should be able to help you to
identify HIV-friendly companies. Alternatively you can call
THT Direct on 0845 12 21 200 for advice.
66
HIV and Travel
Many people living with HIV travel extensively, for work or
pleasure, but there are a number of issues that you need to
consider. If you are planning to travel outside Western
Europe, or if your travel plans are not that exotic but you
have fairly advanced HIV disease, then it would be sensible to
book yourself in for a Travel Clinic appointment (Wednesday
afternoons). Please have a word with us two or three months
before your planned departure date and before spending large
amounts of money on your tickets! The main issues in
relation to travel are set out below:
Considerations
Will you be
allowed
entry into the
country?
Comment
A number of countries have a policy of not allowing
entry to visitors who are known to be HIV positive. If
you are planning to settle or work abroad, the rules are
often even stricter, with many countries insisting on a
negative HIV test result before granting a permit.
Are you fit
enough
to travel?
This is something that you should discuss with us.
Medical insurance is likely to be invalid if you travel
when you are not considered medically fit.
What would
happen
if you were to
become unwell?
If you are intending to visit remote areas in developing
countries it is unlikely that the health-care facilities
available will be as good as those in the UK. You should
consider this seriously when making your travel plans –
particularly if you have advanced HIV infection.
67
Considerations
Comment
Some policies might not cover you for HIV- related
Travel insurance health problems: always check. We should be able
to help you to identify a company that will provide
cover (although maybe at an increased cost) – as
long as your travel plans are not too wild and your
health is OK at the time of booking.
Most vaccines are ‘killed’ or inactivated and pose no
threat
in HIV infection. However, ‘live’ vaccines
Vaccinations
(BCG, MMR, oral polio, oral typhoid [Ty21a] and
yellow fever vaccines) are a problem for patients
with HIV – particularly if you have a low CD4 count
/ symptomatic disease. Be aware that a yellow fever
vaccination certificate is compulsory for entry into a
number of countries – although a certificate of
exemption from yellow fever vaccination on medical
grounds may be accepted.
Chloroquine and proguanil are generally ok (caution
Malaria
is needed with ritonavir) as is doxycycline.
prophylaxis
Mefloquine does potentially interact with PIs, but
can probably be given safely with boosted PIs and
NNRTIs. However, atovaquone (in malarone) and
quinine need to be used with caution.
Food and water-borne infections are always an issue
Avoiding
for travellers – even more so if you have HIV. Avoid
gastro-intestinal tap water – boiled water and bottled beverages
infections
(especially fizzy ones) are usually safe. Also, avoid
swallowing the water that you are swimming in.
Raw or undercooked foods (including fruits and
vegetables) are a risk: steaming hot foods and fruits
that you have peeled yourself should be safe. If you
are going to a very remote area, then you should
consider taking a supply of antibiotics with you.
Many parts of the world have high rates of
tuberculosis. People living with HIV are particularly
Other
vulnerable to certain fungal infections and protozoal
infections which occur in certain parts of the world.
68
Sources of further information on HIV related issues
There is no shortage of advice on HIV related issues. Indeed,
we could argue that there is too much advice out there separating the good advice from the rubbish can be difficult!
Here is our list of useful resources:
Source
Name
National AIDS
Internet Manual
(NAM) /
British HIV
Association
(BHIVA) site
Terrence
Higgins Trust
The Body
Lanarkshire
sexual health
website
Comment
Website
Telephone
Very useful – loads
aidsmap.com 020 7627
of HIV information
3200
and up-to-date news
(quite detailed and
complex at times)
Lots of useful
information on HIVrelated issues as well
as downloadable
booklets
American website
with lots of
information on HIV
Useful for
information on STIs
and broader aspects
of sex and sexuality
69
tht.org.uk
thebody.com
lanarkshire
sexualhealth
.org
0845 1221
200
Source
Name
Comment
Written
NAM booklet
series
Very good, but
somewhat complex
at times. We can
supply, and clarify if
necessary
A little booklet with
a lot of useful advice.
Produced by +ve
publications. We
can give you a copy
A Rough
Guide to HIV
+ve
Other
A magazine that has
HIV and hepatitis
information. We
supply this free
Website
020 7627
3200
plusve.org
Terrence
Higgins Trust
Scotland
Provides information
and practical support tht.org.uk
covering a range of
sexual health and
HIV related issues,
including Welfare
Rights
Princess
Royal Trust
for Carers
Support, alternative
therapies and advice
for people affected
by HIV including
families and friends
70
Telephone
01895
637 273
0141
332 3838
01698
755 550
Who should I contact if I need help?
Counselling, support and general advice
If you want to see somebody for general advice and / or
counselling – or just feel that you need to chat to somebody
– then call the LHAHC and make an appointment to see one
of the specialist nurses (you will often be able to speak to one
of them at the time that you ring) or you can call Terrence
Higgins Trust Scotland.
Medical problems
If you are concerned about a medical problem and you are
registered with a GP, then it is appropriate to see him / her
first regarding minor ailments – particularly if they are clearly
not related to your HIV infection. If your GP is concerned,
he / she will call one of the consultants at Monklands
Hospital.
If you are concerned about a medical problem and you are
not registered with a GP, or there is some other reason that
you cannot or do not wish to contact your GP, then it is
always possible to contact us directly at LHAHC. Remember
that there is a consultant on call at all times with specialist
HIV knowledge and experience. For medical advice, the best
plan is as follows: (see next page)
71
Weekdays (9am – 5pm)
Call one of the secretaries at LHAHC, explain the problem and
leave your telephone number. They will contact a specialist
nurse, doctor or pharmacist, as appropriate, and somebody
will get back to you with advice. Be aware that the advice
may be that we cannot assess things accurately over the
telephone and we may therefore ask you to come to the unit
for urgent review!
Weekends and out-of-hours
Emergency assessment via the infectious diseases unit (ward
2) is the best option, rather than going through the A&E
department. Please ring the ward initially and ask to speak to
the nurse in charge. Explain your problem and leave your
telephone number. The nurse will then seek advice from
medical staff (usually the on-call consultant) and we will get
back to you with advice. Again, the advice may well be to
come up to the ward.
If for some reason all of the above mechanisms should fail
(there is no reason that they should, however), then your best
bet is to ring the switchboard at Monklands Hospital and ask
to be put through to the on-call junior doctor for
infectious diseases or the on-call consultant for infectious
diseases.
72
Pharmacy advice
If your need is for pharmacy advice rather than medical
advice (eg regarding whether a prescription is ready or
similar), then you can telephone the pharmacy department at
Monklands directly. Ask to speak to Kathleen MacArthur, or
leave a message if she is not available.
Patient Advice and Liaison Service (PALS)
PALS is available every Thursday from 9.30am - 4.30pm. It
provides an opportunity to come into the clinic and discuss
any problems (either health or social) with a nurse from the
LHAHC, and get support. We recommend that you phone in
advance to make an appointment.
73
Useful telephone numbers
Lanarkshire HIV, AIDS and Hepatitis Centre (LHAHC)
Monday - Friday 9am - 5pm
01236 712246
All other times (24 hour answering service) 01236 712247
Infectious Diseases Unit (Ward 2)
01236 712239
Monklands Hospital Switchboard
01236 748748
Monklands Pharmacy Department
Monday - Friday 8.30am – 5pm 01236 748748 (Ext 2559)
Monklands GUM department
07768 921 673
Terrence Higgins Trust Scotland
0141 332 3838
THT Direct - HIV and sexual health helpline 0845 12 21 200
Monday - Friday 10am - 10pm / weekends 12noon - 6pm
Princess Royal Trust Lanarkshire Carers Centre 01236 755550
74
Acknowledgements
Grateful thanks to the Medical Foundation for AIDS and
Sexual Health for their kind permission for the use of ‘HIV life
cycle’ image from ‘HIV in primary care’, revised 2005.
Drawings by Alison Mitchell (copyright).
All text copyright NHS Lanarkshire and Terrence Higgins Trust
Scotland.
A big thank you to everyone involved in developing this
resource: Dr Nick Kennedy, Liz McCann, Chris Kimber,
Katrina Mitchell and Alison Mitchell.
75
Please use the table below to note the names and phone
numbers of people you see at the LHAHC.
76