Leading a Positive Life after Diagnosis

Understanding your diagnosis:

Human Immunodeficiency Virus (HIV) is a virus that attacks the immune system by destroying white blood cells called CD4 T cells. CD4 T cells are cells that help fight infection. Initially the immune system tries to compensate by making new white blood cells but eventually it becomes overwhelmed. When the CD4 T cells fall below a critical level Acquired Immunodeficiency Syndrome (AIDS) occurs leaving the body vulnerable to infection which can be life-threatening. Although there is no cure for HIV at present, current treatments work by suppressing the virus and lengthening the time to which AIDS occurs. HIV is no longer the death sentence it was in the 1980s and many patients with HIV are now living into their sixties and older thanks to the availability of better treatment regimes.

How it may affect your health:

Some people do not experience any symptoms when they are first infected with HIV- one of the reasons why so many go undiagnosed. Others may experience a flu-like illness such as headache, rash, sore throat, aching muscles and joints. This is known as seroconversion illness and occurs two to six weeks following contraction of HIV. During this period the virus is replicating and destroying the CD4 T cells. The symptoms occur as a result of your immune system producing antibodies to the virus and usually last about a month.

Following seroconversion, which many mistake for a bad flu, HIV infection becomes latent (hidden). During this stage HIV is still present in your body and you are still infectious however your immune system keeps the virus in check so that you experience no symptoms. Further illness does not typically occur until CD4 counts fall below 200 cells/mm3. Without treatment it takes on average ten years for HIV-related illness and eventually AIDS to manifest.

AIDS occurs when the immune system is so weak that it can no longer fight off infection. So-called opportunistic infections (because they take this opportunity to infect when your immune defences are low) may occur. AIDS can also leave you susceptible to certain types of cancer. It is important to remember, however, that these AIDS-defining illnesses are uncommon in people on treatment for HIV.

How does treatment work?

Since its introduction in 1996, HAART has revolutionised how we treat HIV. It stands for Highly Active Antiretroviral Therapy and typically consists of a combination of three drugs. These may be combined into one or two tablets which you will be required to take once or twice a day. There are various different types of medication available and exactly which drugs your doctor will prescribe for you will depend on your medical history, your CD4 count/viral load and whether or not you have shown resistance to previous treatments. The medication in simplistic terms works to reduce the amount of virus in your body and allow your immune system to recover.

When to start treatment:

Only very rarely is HAART commenced in the early-stages of HIV infection. For the most part, patients are HIV positive for a number of years prior to commencing treatment. What dictates when you commence treatment is your CD4 count. As mentioned earlier, AIDS-related illnesses do not occur until CD4 counts are less than 200 cells/mm3. The latest research, however, shows that there is a benefit in starting treatment before it gets to this stage and the British HIV Association now recommends that treatment is started when CD4 counts fall to under 350 cells/mm3. In some people HAART may be commenced before CD4 counts drop to this level particularly if they are showing signs of AIDS, have hepatitis (a viral infection of the liver) or heart disease.

Your HIV specialist will discuss when the right time is to commence HAART for you, taking into consideration the pros and cons of commencing treatment.
Whenever treatment is started the most important thing is that you remember to take your medication every time it is due. This is important in ensuring the best possible outcome for you.

Understanding CD4 counts and Viral Load:

“CD4 count” basically refers to the number of CD4 T cells present in your body. The more CD4 T cells the better your immune system is at fighting infection. Prior to becoming HIV-positive you will have had CD4 counts of greater than 500 cells/mm3. CD4 counts fall sharply in the initial stages of HIV infection and then rise again as the immune system replaces the CD4 cells destroyed by the virus. However eventually the immune system cannot keep up and CD4 levels start to decline. This makes them a useful marker for how your immune system is being affected by the virus.

“Viral Load” refers to the amount of HIV virus present in your body. A high viral load refers to levels of between 5000 and 10,000 copies per ml. A low viral load is usually between 200 and 500 copies per ml of the virus and indicates that the virus is not actively replicating and therefore the risk of disease progression (i.e. becoming sick in the foreseeable future) is low.

CD4 counts and Viral Load are not just useful indicators of when to start HAART but are also followed in order to show how well the medication is working at suppressing the virus. Ideally, with treatment, your CD4 counts should rise and viral load should fall (the aim is to get viral load below 50). If this does not happen your doctor may consider changing the type of HAART you are on.
CD4 counts and viral load are usually measured every 3-6 months and this is done by a blood test.

Side-effects of treatment:

Although many people experience no side-effects, some of the common side-effects of HAART include: diarrhoea, nausea and vomiting, fatigue, nightmares, headache, lipodystrophy.
Specific side-effects may depend on which drugs you are on and in some cases, particularly in problems with tummy upset, may subside after a short period of time.

Lipodystrophy refers to the redistribution of body fat and results in the classical sunken cheeks appearance in patients taking HIV medication. Although, in itself it is not life-threatening, it can cause distressing cosmetic issues for those affected. Fortunately, these days, it is amenable to treatment. Satisfactory results have been obtained from facial implants for facial wasting and from liposuction for build-up of fat elsewhere in the body. Changing the type of HIV medication you are taking may also help to halt the process of lipodystrophy.
There are more serious side-effects which can occur with HAART but fortunately these are uncommon.

Access to Specialist Care:

The Genitourinary Medicine (GUM) clinic at the Royal Victoria Hospital is the Regional centre for HIV care for Northern Ireland. At the clinic a number of different specialists work together to manage your illness; this includes offering support and advice. This service is available to both newly diagnosed patients and also those who are already being treated elsewhere. A GP referral is not necessary and you can just ring up to make an appointment.
The clinic is situated on Level 3 of the Outpatients Centre on the Royal Hospitals site, Falls Road entrance. To arrange an appointment: Tel 02890 634050.