Health Issues E-Book HIV & AIDs
Contents
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Health Issues HIV & AIDs •
Common Of HIV
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HIV facts & Statistics o
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How is HIV Transmitted o
Seamen & Vaginal Fluid
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Blood to Blood
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Mother to baby
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Ways HIV is not passed on
Signs & Symptoms o
First Stage of Infection
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HIV
Testing for HIV o
Why test
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What to expect at a testing
Treatment for HIV o
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Treatment
Post Exposure Prophylaxis (PEP) o
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Yorkshire & Humberside
PEP How and what
Health Issues
Welcome to the Health Page. We have provided some pages with information on what STI’s are and Drugs & Alcohol Abuse. We have only provided some of the items you may need, if you need any more information please go and see your local doctor or support groups near you. For any more information on any of the subjects on the drop down list please get in touch we will gladly welcome you to our office and pass you on to the right people to give you help & support. Please look after your health, this is important for everyone.
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HIV & AIDs
What is HIV & AIDS? HIV HIV stands for Human Immunodeficiency Virus. HIV infects and gradually destroys an infected person’s immune system, reducing their protection against infection and cancers. Initially, someone living with HIV may show no symptoms of HIV infection as their immune system manages to control it. However, in most cases their immune system will need help from anti-HIV drugs to keep the HIV infection under control. These drugs do not completely rid the body of HIV infection. Find out about the signs and symptoms of HIV infection and about how HIV can be treated. AIDS AIDS is short for Acquired Immune Deficiency Syndrome. AIDS is not a single disease or condition. Instead, it is a term that describes the point when a person’s immune system can no longer cope because of the damage caused by HIV and they start to get one or more specific illnesses. People do not actually die from AIDS; they die from the cancers, pneumonia or other conditions that may take hold when their immune system has been weakened by HIV. The term AIDS is now very rarely used. It is more usual to talk of late-stage or advanced HIV infection. All the information is provided by the Terrance Higgins Trust.
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Common of HIV
HIV in the UK HIV can affect anybody, but in the UK most people with HIV come from two groups:
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men who have sex with men
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people of sub-Saharan African origin.
Gay men are the group most affected by HIV in the UK. However, since 2003 more of the people newly diagnosed with HIV in the UK became infected through heterosexual sex than gay sex. The majority of these became infected with HIV when they were abroad. While these groups are high profile, it is important not to forget the other people who are living with HIV. Around 1,800 people became infected through injecting drugs. Just over 1,000 children in the country have HIV because it was passed on from their mothers, and about 700 people got infected through blood transfusions and blood products. The Health Protection Agency estimates that about 30% of the people in the UK living with HIV do not know that they have become infected. You can find out more details on the UK pages of the Facts and statistics area. HIV worldwide The Joint United Nations Programme on HIV/AIDS (UNAIDS) has estimated that there are up to 33.4 million people living with HIV in the world. Two thirds of them live in sub-Saharan Africa. In the three worst affected countries - Botswana, Swaziland and Zimbabwe - about one in three people is living with the virus. In comparison, there is no country outside Africa where more than one in 20 people is living with the virus. However, although Africa continues to be the worst-affected region, many of the countries with the highest rates of growth are outside Africa. These include India, China, Russia and most of the other former Soviet states.
HIV facts & Statistics
We check all facts and statistics every month, when new facts and statistics are made public we will ensure that we update this page. HIV is one of the fastest growing serious health conditions in the UK. There are now more people living with HIV in the UK than ever before, over a quarter of who don’t know they have the virus. The current situation Thirty years on from the start of the UK HIV epidemic, there were 91,500 people living with HIV in 2010, more people than ever before, with one in four (24%) undiagnosed and so unaware of their infection. The forecast from these figures is that as many as 100,000 people will be living with HIV by 2012.
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6,660 people were newly diagnosed with HIV in 2010, a slight increase from 2009 of 0.5% and some 15% down from the peak year of 2005. However the number of infections acquired in the UK rather than abroad continued to rise significantly at 3,640 for 2010, more than double the figure a decade previously. Half (50%) of these people were diagnosed late, after they should have begun treatment to prevent their immune system becoming damaged. Late diagnosis increases the risk of ill-health, AIDS and death and people diagnosed late were around ten times more likely to die within a year than those diagnosed before treatment was required. Gay men and black Africans are still at highest risk of having HIV, though many Africans were infected abroad rather than in the UK. Diagnoses of HIV in gay men reached 3,000 in 2010, their highest ever level, accounting for 73% of HIV infections sexually acquired in the UK. Numbers of people infected through heterosexual sex in the UK doubled (in the last decade) and continue to rise. Around 69,400 people in the UK accessed care and treatment for HIV in 2010, an increase of 6% on 2009 and more than a three times the number seen in 2000. One in five adults in care were aged 50 years or older, compared with one in nine in 2001. Just over half (51%, 35,280) of HIV-diagnosed people in 2010 were infected via heterosexual sex; 65% (22,940) of these people were black African and 21% (7,550) were white. Gay and bisexual men made up 44% (30,480) of those diagnosed. Overall 82% of those in care in 2010 received antiretroviral therapy, compared with 69% (14,100/20,400) in 2000. Since 2008, national treatment guidelines have recommended earlier treatment. 680 people with HIV died in 2010 and two-thirds of these people were diagnosed late; however this is well below the peak year of 1995 when 1,723 died. To date, 120,000 people have been diagnosed with HIV in the UK, of whom 27,000 have developed AIDS and more than 20,000 have died. Who is most affected? The two groups most affected in the UK are men who have sex with men (MSM) and people who have migrated from regions of the world where HIV is common, such as sub-Saharan Africa. Approximately 3,000 men who have sex with men were diagnosed in 2010, 45% of the total. This was the highest ever level reported and gay men are still the highest risk group for HIV within the UK. In 2010 four out of five (81%) of newly diagnosed MSM probably acquired HIV in the UK. The majority of people actually diagnosed with HIV in the UK in 2010 (50%) had been infected through heterosexual sex, 31% of those infected heterosexually were black African and the majority (68%) of these people had probably acquired HIV overseas. However, the numbers of heterosexual HIV infections that were probably acquired here in the UK have been rising steadily in the last decade- from 320 in 2001 to 1,090 in 2010, a more than threefold increase. Looking at all HIV infections acquired within the UK, this figure now exceeds those acquired abroad. UK infections have increased from 1,950 in 2001 to 3,640 in 2010, almost double. Needle exchange programmes have been very effective, and new diagnoses of HIV infection acquired through injecting drug use (160 in 2010) have remained low. It is also possible for the virus to be passed from mother to baby during pregnancy but improvements to antenatal HIV testing and treatments make this increasingly rare. In the past, some people also got HIV through blood products but in the UK this is now extremely rare. Since the introduction of testing for HIV in 1985, there have been three cases of transmission of the virus to patients through blood from donors. Geography Around two fifths (43%) of all those living with diagnosed HIV in the UK live in London. This proportion used to be much higher, but people with HIV are now living across all areas of the UK and particularly in major cities and in North West England. In the last 10 years, the biggest increases in people living with diagnosed HIV have been in the East of England, the West Midlands and the North East. Late diagnosis
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If someone is diagnosed a long time after they have been infected with HIV, it is more likely that the virus will have already seriously damaged their immune system. Someone is said to have been diagnosed late if the number of particular immune cells (CD4 cells) in their bloodstream has dropped below a certain level. Late diagnosis is one of the biggest contributing factors to illness and death for people with HIV. It is very important that HIV is diagnosed early, so people can start treatment if they need to, look after their own health and take steps to ensure they don’t pass the virus on. In 2010, an estimated 50% of adults diagnosed with HIV were diagnosed with CD4 levels below 350, indicating that their immune systems may have already been damaged by the virus. Treatment guidelines recommend that people with HIV should start taking medication when their CD4 levels get to 350 or below. 28% had severely compromised immune systems with CD4 levels below 200. UK HIV statistics HIV is one of the fastest growing serious health conditions in the UK. Here are some of the recent statistics. All data is taken from the Health Protection Agency (HPA):
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6,660 people were newly diagnosed with HIV in 2010, an increase from 2009. Half (50%) of these people were diagnosed late, after they should have begun treatment. Almost 700 people with HIV died in 2010.
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Infections acquired in the UK continue to rise significantly, at 3,640 for 2010, more than double the figure a decade ago
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3,000 gay and bisexual men were diagnosed in 2010, the highest figure to date.
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50% of new diagnoses in 2010 were among heterosexuals and 42% of these were acquired in Africa.
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69,400 people in the UK accessed care and treatment for HIV, an increase of 6% on 2009 and more than a threefold increase since 2000.
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More than 1 in 5 adults (21%) accessing HIV care in the UK is over 50, more than 4 times the figure in 2001.
Yorkshire & Humberside
Overview There are more people living with HIV than ever before in Yorkshire and The Humber. In 2010 there were an estimated 4,600 people living in Yorkshire and The Humber with HIV. 24% of these people were undiagnosed, There were 397 new HIV diagnoses in the region in 2010. This figure represents an increase of 4% on the 391 reported in 2009 and an increase of 100% from 2001. Of the 397 new diagnoses, 244 were men and 153 women. Heterosexual 55% of new diagnoses (218) occurred in people who contracted HIV through heterosexual sex. 28% (60) of these people acquired their infection in the UK and over half of these people (117) probably acquired their infection in Africa. Men who have Sex with Men At least 132 infections were acquired through sex between men, 33% of new diagnoses and an 11% rise since 2009. 77% of these men (102) contracted the virus in the UK. Age 45 people under the age of 25 were diagnosed in the region in 2010. 53 people over the age of 50 were diagnosed in 2010. This is the highest annual number seen in this age group.
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Diagnosis was most common among the 30-44 age ranges who accounted for 53% (209) of new diagnoses. Treatment and Care There were 3,494 people accessing HIV care in the region in 2010. This represents an increase of 6% on the 3,282 people who were accessing care in 2009 and more than four and a half times the 2001 total of 732. 63% (2,204) of people accessing care in Yorkshire and Humber in 2010 were heterosexual and 31% (1,069) were gay or bisexual men. Black Africans made up 47% (1,656) of the total. There were 618 people over the age of 50 accessing HIV care (18%) in the region in 2010. This represents a twelve fold increase on the 55 people over 50 who were accessing care in 2000.
How is HIV Transmitted
HIV is not passed on easily from one person to another, especially compared to other viruses. That’s because HIV is present in body fluids. So for HIV to be passed on, the body fluids of someone who is already infected have to get into an uninfected person’s body and then into their bloodstream. Main sources of infection The body fluids that contain enough HIV to infect someone are:
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seminal fluid
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vaginal fluids, including menstrual fluids
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breast milk
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blood
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the mucous found in the rectum
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pre-cum (the fluid that the penis produces for lubrication before ejaculation)
Other body fluids, like saliva, sweat or urine, do not contain enough of the virus to infect another person. So the main ways that HIV can be transmitted are:
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through sexual intercourse and other sexual activities
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from mother to baby
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from blood to blood.
Misconceptions about infection You can’t get infected with HIV through normal social contact or through many other actions thought by some people to be risky. You can find out what does not pass on HIV elsewhere on this website. For more information on the list above please see the other pages.
Seamen & Vaginal Fluid
Semen and vaginal fluid HIV is found in semen and vaginal fluid and can be passed on through vaginal, anal and oral sex. The virus can also be present in the fluid that is released from the penis to help lubricate it during sex.
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Reducing the risk Anal and vaginal sex are the most common ways for HIV to be passed from an infected person to someone who doesn’t have HIV. If you are going to have penetrative sex (which is when a man’s penis enters someone else’s body) then the most effective way of minimising the risk of HIV being passed from one person to another is to use a condom properly. A water based lubricant (never an oil based one) will reduce the risk of the condom tearing and make sex more comfortable. Because the HIV virus is found in the fluid released before ejaculation, it is also important that the penis is covered with a condom before penetration and that this doesn’t come off during sex. Relying on someone to withdraw their penis before ejaculation is not an effective way of preventing HIV infection. There have been cases where someone has become infected through oral sex with an HIV positive man, where infected fluids from their penis get into the uninfected person’s mouth. To reduce this relatively small risk you can use condoms for oral sex: some people prefer to use flavoured condoms for this.
Blood to Blood
Blood to blood Bleeding on its own isn’t enough to transmit HIV from one person to another. The blood of a person with HIV needs to get into an uninfected person’s body for them to be at risk of HIV. This sometimes used to happen during blood transfusions and affected some people who regularly required blood products, such as haemophiliacs. However, in the UK since 1985/1986, all blood donations have been screened for HIV and blood products for haemophiliacs have been treated. Another way that blood can be passed from one person to another is through shared needles. Some intravenous drug users (who take their drugs by injecting them) have become infected by sharing needles with others who have HIV. Reducing the risk The two ways that intravenous drug users can reduce the risk of HIV infection are:
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Always use fresh needles
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Never share drug equipment with anyone else.
This advice also applies to you if you inject steroids into your muscles.
Mother to Baby
Mother to baby Babies can get HIV from their mothers, but these days this doesn’t happen often if precautions are taken during the pregnancy, during the birth and in the first months of the baby’s life. So women living with HIV can still get pregnant and have a baby that doesn’t have HIV. If the woman does not have HIV but wants to get pregnant by a man who does have the virus, then this can be done safely by using a process called sperm washing. Risk factors A baby is most at risk of getting HIV from its mother during childbirth when it can come into contact with the mother’s blood. The breast milk of a woman with HIV can have the virus in it, so breastfeeding a baby can also pass it on.
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How to lower the risk of transmission It is very rare for a baby to get HIV from its mother if the following things are done:
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the mother takes anti-HIV drugs at certain times during the pregnancy
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the baby is delivered by Caesarian section
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the baby is given anti-HIV drugs for a short time after being born
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the baby is given formula milk, not breastfed.
Deciding whether to get tested Testing for HIV is offered to all pregnant women but it is a woman’s choice whether or not to take the test. If her result is positive she will be given all the possible help to stop the baby becoming infected. If a woman tests positive, no-one (including her partner, family or employer) will be told without her permission. More information We’ve produced a booklet about being pregnant and having HIV called Thinking about pregnancy. Sperm washing If you are thinking about getting pregnant and your partner has HIV then you could consider a process called sperm washing. In this process the HIV virus is removed from the sperm of a man who has HIV before it is used to artificially inseminate a woman. This means that neither the child nor the mother will get infected with HIV through the sperm.
Ways HIV is not passed on
Ways HIV is not passed on The most common way to become infected with HIV is through sexual contact. HIV is not passed on through normal social contact, including:
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through unbroken, healthy skin
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kissing
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sharing cups, plates, cutlery or linen, such as towels
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using the same toilets and swimming pools.
Caring for someone living with HIV or AIDS does not put you at risk, and neither does mouth-to-mouth resuscitation. And you can’t breathe it in or get infected by mosquitoes or other animals. Reduce the risk It is not the type of person you are, the lifestyle you follow, or where you come from in the world that puts you at risk of getting infected with HIV. It’s what you do. By changing what you do you can minimise the risk of getting infected.
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Signs & Symptoms
HIV affects the ability of your body’s immune system to fight off infection. If the HIV is left untreated, it will destroy a type of white blood cell called CD4 T-cells, which play an important role in your immune system. The number of CD4 blood cells that you have is called your CD4 count. The lower your CD4 count is, the more likely you are to show signs of illness. However, a low CD4 count is not an illness in itself. Some people remain well when their CD4 counts get lower, at least for a while. Other people with HIV may start developing symptoms before their CD4 count is lowered. What to look out for Common symptoms of HIV infection, especially as your CD4 counts get lower, include:
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unintentional weight loss
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chronic diarrhoea
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skin rashes, especially on your face, genitals or anus
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an increase in herpes ulcers or thrush infections in your mouth and genitals
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sweats, especially at night
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unusual tiredness
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nausea or loss of appetite
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swollen lymph glands in the neck, groin or armpits.
These symptoms can all be caused by conditions other than HIV, and do not mean you have AIDS. However, if you experience all or some of these symptoms persistently, it might be a good idea to get an HIV test, especially if you think you may have been at risk of HIV infection. When people first become infected with HIV most of them exhibit some mild symptoms that could be mistaken for something else.
First stage of infection – Serocoversion
First stage of infection – Seroconversion If you become infected with HIV, you are likely to develop a short-lived illness called Primary HIV Infection (PHI). This is also called Seroconversion. The symptoms of PHI usually start to appear within two weeks of infection and may continue for three to four weeks or more. The symptoms of PHI are like those of flu, and usually include:
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fever
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aches in the joints and muscles
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fatigue
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headache
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swollen glands, often in the groin
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sore throat
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rash
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nausea
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diarrhoea.
However, one thing that distinguishes PHI from flu is that you probably won’t have any congestion in your nose or chest. Not everyone experiences the same symptoms. About 10% of people experience no symptoms at all, and a small proportion of people develop a more severe illness. What to do now If you develop these symptoms and realise that you have been at risk of HIV infection recently, it might be a good idea to think about having an HIV test. There are several advantages to being tested early on in the course of HIV infection:
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You have much more time to get used to living with HIV before you have to start taking treatment permanently.
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Some doctors think that if you take a short course of HIV treatment early, you might be able to prolong the time you can stay off treatment later.
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You are more infectious during this period, and much more likely to pass HIV on to your partners, so knowing your status can help you to avoid passing HIV on to others.
What happens next After six weeks or so the PHI symptoms disappear and you will feel and appear well. What is happening is that your immune system has contained the HIV to a degree, resulting in a lower amount of HIV in your blood (this is known as your viral load). This next stage is known as Asymptomatic HIV infection, as you have no symptoms. HIV – Asymptomatic HIV infection
Asymptomatic HIV infection After the period of primary infection most people feel and look well for a number of years. They are known as asymptomatic, which means they have no symptoms. The length of time people stay asymptomatic varies tremendously. In the UK the average length of time from becoming infected to developing late stage HIV, or AIDS, is around 10 years. Some people become sick within two to three years of being infected, while a few per cent of people who were infected in the 1980s are still well, have normal CD4 counts, and don’t have to take treatment. These people are sometimes known as longterm slow progressors or non-progressors. How long will I stay asymptomatic? The time you stay asymptomatic varies for all sorts of reasons:
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You may have got infected with more than one kind of HIV at once (referred to as dual infection).
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You may have HIV that reproduces particularly fast or slowly.
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Some people have a genetic variation that means HIV finds it difficult to infect their cells.
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Your body may have mounted a particularly strong defence against HIV when you were first infected.
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You may have other infections which also damage the immune system, such as herpes or tuberculosis (TB). This is one reason why it is particularly important to stay healthy if you have HIV.
Stress, fatigue, depression and some recreational drugs can all run down the immune system, which is why it is important to stay well and happy. And poor diet also plays a part: this may be the reason why people in developing countries tend to develop AIDS faster. What is happening to my body? During this period HIV will still be actively reproducing and destroying your T-cells, and other T-cells will be trying to fight it. You may get slight symptoms such as night sweats and aching muscles to show this is happening, and some people experience weight loss. It is important to keep visiting your clinic every three to six months to have your CD4 count and viral load monitored, so your doctors and you can decide if and when to start treatment. Late stage HIV, or AIDS After a period of time, often up to 10 years after becoming infected with HIV, your immune system will become so weakened that the body becomes susceptible to serious illnesses. Once your CD4 count falls below 200, AIDS-related illnesses may appear. Many of these infections, though serious, are treatable to some degree, and others often improve if you start HIV treatment and your CD4 count goes up. Testing for HIV
f you’re thinking about having an HIV test, or simply want to know more about them for any reason, we can help. This is where you can find out about:
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what an HIV test is
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when you should get an HIV test done
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what the results mean
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where you can get HIV tests done
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how to find out more about HIV testing
What is an HIV test? You can find out if you have become infected with HIV by having a test that takes blood from your arm or from a pin prick on your finger. The test looks for signs of HIV infection in your blood. When should I get an HIV test? Signs of infection don’t show up in your blood as soon as you get HIV. It takes a few weeks. For most people their blood will show signs of infection within two months of when they got HIV. The blood of all infected people will show signs within 3 months of them getting HIV. The time between getting infected and signs of infection appearing in the blood is called “the window period”. Testing during the window period means a chance the test might not detect a recent infection. You could have HIV but it’s not yet showing in your blood. For this reason if your most recent risk of getting HIV was within the last three months you can test straight away – but you’ll be advised to test again a few weeks later so that a recent infection isn’t missed. The testing clinic will talk this over with you in more detail. If your last risk was over 3 months ago you’ll only need to test once.
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It’s best not to delay testing. Clinics will be happy to test you at any time. HIV tests now detect infections quicker, often just a few weeks after someone gets infected. If you’ve put yourself at risk within the last 72 hours you can always access PEP which can stop the infection taking hold. What do the results mean? ‘Negative’ If you test three months or more after your last risk and no signs of infection are found, then your test result is ‘negative.’ You can now be sure that you do not have HIV. A ‘negative’ test doesn’t mean you’re immune or protected from HIV. Take risks again and you could get HIV. If you test before three months have gone by since your last risk then there’s a chance that a negative result may not be accurate. This is why a second test is needed a few weeks later to be sure the first test didn’t miss a recent infection. ‘Positive’ If signs of HIV infection have been found in your blood then the test result is ‘positive’. This means you have HIV. You could now pass it on to others through unprotected sex, giving blood or, if you inject drugs, by sharing needles. If you think you may have put others at risk of getting HIV you can talk over with the clinic whether you want to tell them or let the clinic tell them. Testing ‘positive’ means you have HIV but it doesn’t mean you have AIDS or will get it. AIDS is the name for a range of illnesses people with HIV can get. Thanks to good treatment these days most people with HIV don’t go on to get that sick. HIV tests are reliable. Before someone is given a ‘positive’ result the blood is tested several times to be totally sure. Where can I get an HIV test? It’s your choice. These are some of the places that test for HIV:
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a Terrence Higgins Trust Fastest clinic (where you can get the results in 20 minutes)
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a genito-urinary medicine (GUM) clinic
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your family doctor (or GP)
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a private clinic (where you’ll have to pay)
Bear in mind that each option has advantages and disadvantages. How can I find out more? You might have more questions about testing: – we’re here if you need to ask us or if you’d like some support at any time.
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Why test? Isn’t it better not to know?
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What will happen when I go for the test?
Why test
Why test? Isn’t it better not to know?
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Treatment for HIV has become very good over the last ten years or so. These days if someone has HIV it’s never better not to know. Here’s why… Your health If you have HIV, avoiding testing doesn’t make the virus go away. But it does allow HIV to silently damage your health all the time you’re untested and untreated. Then one day, after the virus has done serious harm to your immune system, you can fall dangerously ill. The longer someone goes untested and untreated, the more chance that HIV treatment won’t work as well as it would if started sooner. But if someone tests soon enough treatment can keep them healthy. Far fewer people die now because of HIV thanks to treatment. But those who do die are often people who didn’t test sooner. Testing puts you in control. People you care about Testing can save your life and protect others too. Imagine if you had HIV but didn’t realise and then infected others without knowing. Knowing the unknown Not knowing for sure if you have HIV can mean a lot of stress over a long time. Many people think they’ll test ‘positive’ but test ‘negative’. Why worry for nothing if you turn out to be HIV negative? Testing negative would be a big relief. It could be the fresh start you’ve been looking for, a chance to make more effort to stay safe. And if you do have HIV? Knowing you’re ‘positive’ gives you the best chance of a long, healthy life thanks to treatment. Many people find testing ‘positive’ helps them look after themselves more. They can change things in their lives for the better. Whatever your result, testing puts you in control and lets you know where you stand. If you’re not a British citizen but are applying to stay in the UK, your test result will not count against you, whatever the result. What to expect at a testing
What to expect at an HIV test If you’ve decided to have a test done for HIV, you need to decide where to go:
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a genito-urinary medicine (GUM) clinic
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your GP (family doctor)
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one of our Fastest clinics
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a private clinic (where you’ll have to pay)
What happens first? At the clinic before the test you’ll be told how the test works, you can talk about any risks you’ve taken or how you might react to your result. Then a small sample of blood is taken from your arm or from a pin prick on your finger. Getting the result How quickly you get the result depends on the clinic. Some places, like our Fastest clinics, offer ‘rapid tests’ with your result ready within 20 minutes of taking the test. Other clinics offer this or a same day results service. Some may take a week to get your result back. You can call clinics to ask how long it would take to get a test result Whatever your result it will not be usually given over the phone or by letter: you will need to go back to the clinic.
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The next steps After getting your result you should have the chance to talk to someone about how you feel. Your result is confidential: no-one else will be told without your permission, including your partner if you have one, your doctor or the immigration authorities. If your result is positive you’ll be given support and help with what to do next, including seeing a doctor to talk about whether you need to think about taking HIV medication. What the results really mean Being told you have HIV does not mean you have AIDS or will get AIDS. The terms HIV and AIDS do not mean the same thing. If you are diagnosed with HIV you might have good health for many years to come. Over the years HIV can slowly make your immune system weaker, leaving you open to serious infections. But anti-HIV drugs can keep HIV under control for many people, meaning many years of good health. If you have HIV you can pass it on to others if you have sex without a condom, or practice any other unsafe sexual behaviour, or share needles for injecting drugs. You can talk at the clinic about whether to tell people you have sex with that you have HIV. But no-one will be contacted by them unless you agree. If people know you are living with HIV they may react badly towards you, at least initially. How we can help If you have questions about HIV tests, including concerns about mortgages and life insurance, you can talk to someone at THT Direct on 0808 802 1221. Or you can ring your local HIV / AIDS charity.
Treatment for HIV Combination therapy Taking a combination of three or more drugs can stop HIV from reproducing and allow your immune system to recover. It also stops HIV changing its nature, or mutating, every time it reproduces. Every copy of itself that HIV produces is slightly different. HIV copies itself extremely fast, and quite frequently a copy of HIV will be produced that is not affected by one or more drugs. This is known as a resistant virus. How combination therapy works Different drugs stop HIV reproducing in different ways and a combination of three or more are needed to be effective. The aim of treatment is to reduce the quantity of the virus to minimum possible, although it won’t completely disappear. There are now an increasing number of anti-HIV drugs for doctors to use in combination therapy. Adherence Combination therapy only works if you take the drugs you are given on time, every time. You can read more about adherence, including what to do if you miss a dose and tips to help you take your drugs correctly, on another page in this section of our website. Side-effects Many people experience short-term side-effects when they first start taking the drugs that they are prescribed, but these usually improve after a few weeks. Any long-term side-effects should be monitored by your doctor or clinic and dealt with if they occur. Acute side-effects of anti-HIV drugs are rare, but if you experience any you should see your doctor immediately.
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Treatment information
We have given a list of all treatments and advice on what to do on this page, please read it carefully. Adhering to treatment To make sure that HIV treatment works effectively it is important that the drugs are taken on time, every time. This is called 100% adherence. It can be hard to achieve 100% adherence, but studies have shown that that in order for HIV treatment to have a good chance of working, people have to take their drugs correctly 95% of the time. For some treatments the exact timing is important, whereas for others you may have some leeway. Check with your doctor to find out what applies to your treatment. Missing a dose If you do forget a dose or are late with it, then don’t panic. Just take the next one on time. But don’t take two at once. The same applies to timing: these days nearly all combinations give you several hours’ leeway, so don’t worry if you don’t take them the minute you are supposed to. However, it is important not to miss several doses in a row, for example at weekends. Having one break of several days is more likely to create drug-resistant HIV than missing the occasional single dose. Improving your adherence There are many ways that you can improve your adherence and help make sure that your HIV treatment remains effective:
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Make sure you understand exactly when to take your pills, and what they do. Studies have found that if people know how their drugs work, they take them more regularly.
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Buy an alarm watch or bleeper and set it to go off when your doses are due.
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Ask a friend or relative to remind you to take your pills.
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Keep an emergency dose in your desk at work, or in your bag if you’re away from home. Remember, though, that some pills have to be refrigerated and will eventually ‘go off’ if not kept at the right temperature.
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Use a pill-box with separate compartments that you fill up once a week.
Short-term side-effects Many people experience short-term side-effects when they first start to take anti-HIV drugs, but these usually improve after a few weeks. Short-term side-effects can include:
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fatigue and muscle aches
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nausea and vomiting
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diarrhoea
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sleep disturbance and bad dreams
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dizziness, lack of concentration and disturbed moods
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kidney pain
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liver flare-ups
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rashes
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hair loss and dry skin.
Although the side-effects can be inconvenient, most will improve as your body becomes used to the medication. If you find that the side-effects make it hard to take the anti-HIV drugs then you should talk to your HIV doctor. Acute side-effects If you experience any other side-effects when you first start taking anti-HIV drugs you should see your doctor immediately. Acute side-effects are very rare, but should be addressed if they occur. Long-term side-effects Any long-term side-effects of taking anti-HIV drugs can take a while to become apparent, but they may have implications for your health or quality of life. Your HIV clinic will monitor these, and will be able to offer help by changing your combination of drugs, by medication and perhaps even through surgery. Long-term side-effects can include:
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fat loss
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fat accumulation
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high blood lipids
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liver problems
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diabetes and insulin resistance
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peripheral neuropathy.
Other long-term effects may be anaemia and other blood disorders, osteoporosis, kidney problems and sexual dysfunction. Fat loss (Lipoatrophy) This is the loss of the fat layer under the skin that makes your limbs, buttocks and face appear wasted. Switching to a difference combination of anti-HIV drugs can help, and cosmetic remedies are available from some HIV clinics. Fat accumulation (Lipodystrophy 1) This is the accumulation of fat inside the abdomen, in the breasts in women and sometimes between the shoulderblades. Exercise is the best remedy for the abdominal fat accumulation, while fat between the shoulderblades can be surgically removed. High blood lipids (Lipodystrophy 2) Lipids is a term for any soluble fat. High levels of blood fats such as cholesterol, particularly the LDL-cholesterol associated with heart trouble, and triglycerides are found in many people taking HIV treatments. Changing your combination of anti-HIV drugs may help or lipid-lowering drugs may be prescribed by your doctor. Liver problems
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Liver problems can be caused by any HIV drug, and are much more likely in people co-infected with Hepatitis C or chronic Hepatitis B. Be nice to your liver by only drinking alcohol rarely or not at all, avoid other recreational drugs and eat a low-fat diet. You could also try complementary supplements such as milk thistle (silymarin). Diabetes and insulin resistance Insulin resistance, which is when your body’s ability to process sugar efficiently is reduced, is quite a common side-effect of HIV drugs. A low-carbohydrate diet and exercise may help, and you may be prescribed antidiabetes drugs. Peripheral neuropathy This is damage to the nerves, particularly in the feet and, to a lesser extent, in the hands and the sacral nerves serving the genital area. Physically it feels like tingling, stabbing pains or numbness in the affected areas, and if it is severe it can make it difficult to walk. It can be hard to alleviate, but there are some treatments available. Acute side-effects When you start taking anti-HIV drugs your HIV doctor will give you information and advice on any possible acute side-effects and will carefully monitor your progress. It’s rare to have any acute side-effects, but if you do experience any then you should seek immediate medical attention. Acute side-effects may include:
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hypersensitivity reactions
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Stevens-Johnson syndrome
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hyperlactataemia
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pancreatitis.
Remember: these are very rare, but if you have any concerns, speak to your doctor. Hypersensitivity reactions These are severe allergic reactions to HIV drugs that usually appear in the first six weeks or so of your therapy. In particular, two well-characterised hypersensitivity reactions are caused by the drugs abacavir and nevirapine. Abacavir The abacavir hypersensitivity reaction usually shows itself as rash, fever, diarrhoea and/or vomiting, muscle pain and sometimes chest congestion. Anyone starting on abacavir should seek immediate medical attention if these symptoms appear, but don’t stop taking the drug immediately. If you do get a hypersensitivity reaction to abacavir, your doctor should take you off the drug. It is then very dangerous ever to take abacavir again, as this will produce a much worse hypersensitivity reaction.
Nevirapine The nevirapine hypersensitivity reaction involves acute liver damage which, if left untreated, may proceed to liver failure, usually accompanied by fever. If this is going to happen, it always occurs in the first six to eight weeks of taking the drug. You might also get a rash but this does not indicate hypersensitivity in itself. Speak to your doctor immediately who should stop you taking nevirapine. Stevens-Johnson syndrome The symptoms of Stevens-Johnson syndrome are a severe rash accompanied by blistering. Your HIV therapy should be stopped immediately until this is sorted out. Hyperlactataemia
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This is an excess of lactic acid in the blood, which may develop into the life-threatening condition lactic acidosis, although this is very rare indeed. It feels like severe exhaustion with breathlessness, muscle pain and nausea. High doses of B vitamins with l-acetyl carnitine have been used successfully to treat it.
Pancreatitis This is an inflammation of the pancreas, which can cause fatigue, central abdominal pain and nausea.
Post Exposure Prophylaxis (PEP)
What is PEP? PEP stands for Post Exposure Prophylaxis, it’s a treatment that may prevent HIV infection after the virus has entered the body. Here are some things to consider when you’re thinking about PEP:
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It could stop someone getting HIV
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It involves taking anti-HIV drugs for four weeks
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It must be started as soon as possible after unsafe sex or a condom not working – and definitely within 72 hours (three days)
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There are side effects
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PEP is not guaranteed to work.
PEP is a course of anti-HIV medication that needs to be taken daily over the course of a month. The drugs have been available for HIV prevention since the early- to mid-1990s for health workers who had ‘needle-stick’ or similar injuries. More recently, PEP has been made available under strict prescribing guidelines to people who might have been exposed to HIV during sex. If you think you might have exposed yourself to HIV during sex it might be worth thinking a bit more about how HIV is transmitted. For the treatment to be effective, it needs to be started within 72 hours of exposure. It can cause severe side effects such as diarrhoea, nausea and prolonged headaches. PEP can be available from sexual health clinics and hospital accident and emergency (A&E) departments. Many people say they have had difficulty obtaining PEP from these places, especially outside metropolitan areas. You are more likely to be successful if you enquire at a sexual health clinic or A&E in a hospital where there is also a specialist HIV clinic. You must also meet the prescribing guidelines for PEP. PEP is not a cure for HIV and is not guaranteed to prevent HIV from taking hold once the virus has entered the body. Condoms and lube for sex remain the most efficient way of staying safe from HIV. PEP How & What
We have given all the information on what PEP is and how it works in the details below, please read them carefully. If you need any more information please go and see your doctor or GUM Centre. How does PEP work?
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PEP works by preventing HIV from reproducing before HIV infection can be established in a person’s body. As with other medications, it is important you take the pills as stated to maintain the right amount of the medication in your bloodstream at all times. This will mean that the medication will be as effective as possible. PEP works best when taken at the right dose, at the right time, without missing doses. How could the infection be stopped? Taking two or three anti-HIV drugs every day for four weeks might stop the HIV before it gets a permanent hold in the body. PEP is not a ‘morning after’ pill that’s taken just once – it’s one month of drugs. But if HIV’s in the body, isn’t it too late? No. After HIV gets into someone’s bloodstream it takes time (hours or a few days) before it permanently infects them. If someone acts in that short time, they stand a chance of stopping HIV before the infection takes hold. So with PEP someone won’t become HIV positive? Research seems to show PEP makes infection with HIV a lot less likely. But PEP doesn’t work every time – some people who take it still end up with HIV afterwards. It can fail because some anti-HIV drugs don’t work against some strains of HIV. And it’s more likely to fail if it’s not taken properly or soon enough. How soon? The quicker PEP is started the better – within hours. The longer the wait the more chance it won’t work. Also, some doctors won’t prescribe PEP after 48 or even 24 hours, so it is important that you don’t wait to seek PEP after you have been at risk. After 72 hours (three days) PEP usually isn’t given, because studies show it is unlikely to work by then. Are the drugs the same as the ones taken by people with HIV? Yes, it’s the same ‘combination therapy’ that’s taken by HIV positive people. I have unresolved immigration issues, can I access PEP? PEP is considered to be a life-saving emergency treatment and should be available to anyone regardless of their immigration status. Is PEP is a cure for HIV? There’s no cure for HIV. PEP can only stop an HIV infection if taken very soon after HIV has entered the body, before the infection takes hold – within the first 72 hours (three days). Once HIV infection takes hold and the infection becomes permanent then anti-HIV drugs cannot get rid of HIV from the body. This is because the virus is now in parts of the body that the drugs cannot reach. So once HIV permanently infects someone, the drugs can usually control the HIV in their body but can never get rid of it completely. Does PEP have side effects? Yes, it can cause diarrhoea, headaches, feeling sick and vomiting. Because of the side effects, many people taking PEP need time off work or study and some have to stop taking PEP. Side effects go once someone stops taking the drugs. Where does someone get PEP from? These places might give people PEP:
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Sexual Health clinics (GUM or ‘clap’ clinics)
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Hospitals (usually A&E or Accident & Emergency departments)
You must also meet the prescribing guidelines for PEP – you must see your doctor or go and see someone from your local GUM centre. If you already have HIV, try your HIV clinic if the PEP is for someone you’ve had sex with. Not all these places in every part of the country will have PEP or be able to give it, and GPs usually won’t be able to prescribe it.
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What are the chances someone will get PEP? New guidelines have been given to Sexual Health Clinics that help doctors decide if PEP should be given. A doctor will need to ask questions about what kind of sex happened, when and who with. It’s worth thinking about PEP if you or someone you had sex with didn’t use a condom (or something went wrong with the condom) and it’s not later than 72 hours (three days) since it happened. Doctors might sometimes give PEP after oral sex, depending on the circumstances. What kind of questions are asked if someone wants PEP? The questions they will ask you will be about:
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the person the unsafe sex was with (to judge the chances they had HIV or not)
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the sex involved, e.g. when it happened; was it oral, vaginal or anal sex; was semen involved?
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the viral load of the person with HIV, if known. If their viral load is undetectable, it is unlikely you will be prescribed PEP.
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having an HIV test. Before someone is given PEP they must have an HIV test to check they don’t already have HIV. They must also agree to be tested after taking PEP to see whether it has worked. PEP won’t be offered if someone refuses to be tested.
What if someone cannot get to a place that has PEP within 72 hours? Once 72 hours have passed, PEP won’t usually be offered. So if it’s not possible to get to a Sexual Health Clinic that’s open it may be worth trying a hospital Accident & Emergency department because they never close (although there’s no guarantee they’ll give PEP). If someone takes PEP, can their body become resistant to HIV drugs so that the drugs won’t work if that person later gets HIV? No, it’s the virus (HIV), not someone’s body, that can become resistant to the drugs. If PEP works it gets rid of the virus – and the virus cannot become resistant because it is not there anymore. So if someone were to get HIV later and needed drugs, it wouldn’t make any difference that they took PEP in the past. But if PEP doesn’t work and a person then ends up infected, there may be problems with the HIV in their body being resistant to some drugs, including ones used in PEP.
If someone’s taking PEP, does that make them immune to HIV while they’re on it or once they’ve stopped taking it? No. Unsafe sex while taking PEP could let more HIV into your body, making PEP much more likely not to work. If after taking PEP someone’s stayed HIV negative and then has unsafe sex again, they can become infected just like any other HIV negative person. Now there’s PEP, does it matter so much if people don’t use condoms? Here’s why PEP doesn’t change the need for condoms:
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Using a condom is more likely to stop HIV being passed on than PEP is
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Condoms don’t make you ill with nasty side effects
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You need a condom for as long as the sex lasts – but PEP lasts for four weeks
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Condoms are everywhere. PEP can be hard – sometimes impossible – to get
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You control getting hold of condoms but doctors decide whether you should get PEP, and they may say no.
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How many times can someone have PEP? Doctors decide who gets PEP and they’re unlikely to give these expensive and powerful drugs to the same person time after time. So someone who keeps having unsafe sex will usually be offered help with having safer sex and won’t be given PEP lots of times. Besides, the side-effects often put people off wanting to take PEP more than once. If you’re having trouble accessing PEP, there are a few things you can do to make things move more swiftly. Use the Chief Medical Officers recommendations In 2006 the Chief Medical Officer, Sir Liam Donaldson, wrote to all Primary Care Trusts stating the PEP should be made available as part of a wider HIV prevention strategy. You might find it useful to print it out and take it with you to show medical staff to support your case. What if there’s no PEP in your area? Not all Sexual Health clinics and Accident and Emergency departments in the UK have procedures in place to offer PEP. Why not travel to your nearest prescribing centre and try to access PEP there? If you know that PEP is not available in your area, you could do the following:
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Write to the Chief Executive of your local PCT asking them why PEP is not available locally and what steps they intend to take to change that situation.
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Write to your local MP asking them to act on your behalf to get PEP available locally.
You might want to include some of the evidence on why PEP should be available. If you haven’t taken PEP If you have decided not to take PEP, or weren’t able to get it, you may still have some concerns. If you are unsure if HIV has been passed on, the only way to know this for sure is to take an HIV test. However, you will have to wait until three months after you were at risk until it will be worthwhile testing. This is because the HIV antibodies (which is what the test actually looks for) can take up to three months to appear in your body. Also, if you have been at risk from HIV, there is a chance you have been at risk of picking up other STIs as well. These can increase the chances of HIV being passed on and many of these have no symptoms, so the only way to know for sure if you have an STI or not is by having a sexual health check-up. You can have this done confidentially at your local sexual health clinic, or you could ask the nurse to do this when you are having your HIV test. If you have ongoing concerns about HIV risk in your sex life, you might want to think ahead to minimise problems in the future. Taking PEP You may have had to make the decision to go on PEP pretty quickly, so chances are you still have a few questions about it. This section should help to address some of the last minute questions or concerns you might have about taking PEP. Missing doses If you find you have missed a dose, take it as soon as you remember it. Do not just wait and take a double dose at the time you are next due – this can be dangerous as many HIV drugs are toxic and cause side effects. Your PEP drugs should be taken as on time as possible. Many of the people for whom PEP failed to work didn’t take the medications as they were supposed to. Busy, busy, busy… There are plenty of practical ways you can make sure you remember to take your medication on time. For example, setting alarms on mobile phones, watches or computers can make sure the time doesn’t slip you by.
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Keeping the drugs where you can see them and pre-organising your doses can make it easier to remember and take your medication if you think you might (or do) have trouble. Many people find that it’s when they are away from home that they tend to miss doses more often. If you are planning a night out and aren’t sure you are going to make it home for whatever reason, take a dose of medication with you. Storage Drugs recommended for use in the UK for PEP generally don’t need special storage. They should be kept in a cool, dark, dry place at a temperature under 30°C. The place where you keep your other medicines is usually fine, as long as it isn’t in the bathroom, which is usually too damp. You should check with your doctor or hospital pharmacist to be sure. Side effects The severity of side effects of PEP can vary from person to person and you need to be prepared for them. The most common side effects include nausea/vomiting, diarrhoea, headaches and fatigue. For some people the side effects can be bad enough to stop PEP altogether. It is important you let your clinic nurse or doctor know what side effects you are experiencing. There may be a way to counter these with, for example, anti-nausea and antidiarrhoea medication. If you are finding the side effects too much to handle and are unsure that you can keep taking PEP, you should discuss this with your doctor before stopping. Most other side effects associated with anti-HIV medication, such as lipodystrophy (i.e. the redistribution of fat around the body) tend not to occur from such short courses. Recreational drugs Recreational drugs can damage your immune system, so taking them can make a difference to how effective PEP will be. As well as taking the right pills on time, staying healthy by getting enough sleep and eating properly play a big part in preventing infection. Sometimes taking recreational drugs can get in the way of this, so many people who normally use them just choose to have a month off. Your body’s reaction to some recreational drugs will be different while on PEP medication. Also, going out all night can mean that you end up away from home without your medication or just miss doses altogether Staying in touch Your doctor will probably ask you to come in regularly, perhaps even once a week, to check how you’re going and give you as much support as you need to keep on PEP. You can discuss any problems you might be having with your treatment, or beforehand if necessary. They will give you contact details at the clinic. After you have finished your course of PEP, you will need to make one more visit – 12 weeks after finishing the course. This is to see whether PEP has been successful in preventing HIV infection or not. Making preparations While you are on PEP, it may be necessary to arrange time off work or study. Many people who go on PEP often find that the side effects are so severe they are unable to work. Unfortunately, it is hard to tell how long this may continue as it varies from person to person. Also, you may need help with day-to-day activities such as shopping etc. So it may be necessary to tell someone what you are going to do, so that you may be able to get some help if things become too difficult while on your medications. After you’ve taken PEP After you’ve finished your course of PEP there are a few things left to do and consider before you’re in the clear. It might be worth thinking about steps that you can take to safeguard your sexual health more effectively in the future. HIV testing After you have finished your course of PEP, you will need to go for an HIV test to see whether it has worked. Remember that PEP isn’t guaranteed to work, although it has a very high success rate for people who take it correctly. Your doctor, nurse or pharmacist will tell you how to do this.
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You will need to wait 12 weeks after you finish your course of PEP before going back to your clinic to take your HIV test. STI testing If you have been at risk from HIV, there is a chance you have been at risk of picking up other STIs as well. Many of these have no symptoms, so the only way to know for sure if you have an STI or not is by having a sexual health check-up. You could ask the nurse to do this when you are having your HIV test. Talking to someone Both while you are taking PEP and for the 12 weeks afterwards while you are waiting for your HIV test, you may feel like you want to talk to someone. Health advisers at the clinic where you received PEP should be available to talk about any issues that might come up in this period after finishing the medication. Safer sex During this time it is important that, when you have sex, you keep having safer sex, since it will be unclear as to whether HIV is still in your body or not. Until you are sure that HIV infection has not occurred (through having an HIV test) you could risk passing HIV onto your partners if you have unprotected sex.
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