The advances in HIV treatment have been one of the biggest developments in modern medicine and innovations in medicines mean that fewer people experience intolerable side effects from their treatment today, compared with in the early days of HIV treatment.
Side effects can still occur, as with any medicine and can have a considerable effect on day-to-day life and long-term health so it is important to discuss side effects that you may be experiencing and their impact on your quality of life with a doctor.

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Quality of life in the early days

 

In the early days of HIV treatment many people suffered from excessive side effects, including changes in body shape (fat loss or fat gain), damage to the nervous system, diarrhoea and sleep problems. The side effects were so unpleasant that people would miss treatment doses, which impacted on how effective the treatment was.

These side effects not only had a physical impact, they also impacted upon the individual’s mental health and social wellbeing. These visible and emotional changes often made it difficult for people to keep their HIV status personal, if they chose to.
Whilst people living with HIV can still experience some of these treatment side effects, the aim of treatments today 
is to ensure they effectively manage the HIV virus and are tolerable to take.

Side effects can have an impact on many aspects of a person’s quality of life:

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• Work

• Family

• Social life

• Sex life

• Exercise

• Sleep

• Diet

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Goals of treatment today

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Today, the focus of effective HIV treatment is much more holistic, taking into consideration wellbeing and convenience. Ongoing treatment advances have led to a dramatic reduction in the incidence of AIDS and AIDS-related deaths, but also to fewer side effects.

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HIV management goals today include:

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• Reducing the risk of getting HIV-related diseases

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• Improving quality of life;

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• Keeping viral load as low as possible;

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• Providing treatment options that are tolerable and easy to take;

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• Restoring and preserving CD4 count;

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• Preventing HIV transmission to other people;

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• Managing the exacerbation of health problems more commonly associated with later life, such as heart disease, high blood pressure, blood fat levels and kidney and bone problems.

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Side effects associated with varioustreatment classes

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Although HIV treatment options have improved dramatically, there are still possible side effects associated with various  treatment classes. Side effects can vary, depending on the patient and the treatment regimen. However, as time has gone on the focus has been to make treatments that are tolerable for everyone. 

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Some current common side effects include, but are not limited to:

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• Nausea, bloating and diarrhoea. These side effects are associated with most classes of drug and particularly with protease inhibitors (PIs). It is important that you discuss these side effects with your doctor or nurse at every appointment.

• Mood changes, anxiety, dizziness and disturbed sleep. These are often associated with non-nucleoside reverse transcriptase inhibitors (NNRTIs). However, this has been modified in some newer treatments.

• Kidney-related side effects. These have been associated with nucleoside reverse transcriptase inhibitors (NRTIs). However, routine urine tests can be used to assess the impact.

• Liver-related side effects. These have been associated with PIs, however, most classes of drug have the potential for liver toxicity.

• Body shape change (lipodystrophy), which can include weight-loss in the arms, legs, buttocks or face and weight gain in the waist, stomach and sometimes neck. Most classes of drug have the potential for lipodystrophy.

• Cholesterol problems, including an associated risk of heart disease, heart attacks and strokes. These side effects have been associated with PIs.

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Not all possible side effects of HIV treatments are listed on the opposite page and not all the side effects apply to all treatment classes. Details of side effects associated with a particular class/medicine can be found in the patient information leaflets which accompany each medicine. Side effects should be reported to your healthcare professional.

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Talking to your doctor or healthcare professional

 

Having open and honest conversations with your healthcare team about treatment options and any subsequent side effects will help you to manage HIV well. 

To make the conversation easier it can help to prepare in advance of your appointment. Think carefully about how you are feeling and the impact  of side effects on your wellbeing.  In some cases, your doctor’s priorities will be on how best to control your  HIV and yours might be to let them know what impact they are having on your quality of life.

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Some doctors may be apprehensive about discussing side effects with their patients in case the patient over-estimates their incidence and impact and subsequently decides not to start treatment. 

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Your doctor wants you to take medication that is right for you. The following tips will help you to better manage your HIV and have open discussions about treatment options: 

 

• Keep a side effects diary and include how the side effects make you feel and what impact they have had on your life;

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• Discuss your diary with your doctor at every appointment;

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• Schedule appointments as needed to discuss side effects rather than waiting until your next routine visit;

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• Consider together if you are on the right treatment for you. For the majority of patients there are other treatment options to consider.

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