Positive Life NSW

According to Australian research, 30% of those currently taking antiretroviral (ARV) therapy experience side effects. The frequency of side effects varies extensively; some side effects are rarely seen, whereas other side effects may be very common. Side effects can also vary in severity—from very mild problems to severe and sometimes life-threatening complications.

Before HIV drugs are approved for use, pharmaceutical companies must show that any side effects the drugs cause are either mild enough, or rare enough that the benefit to the patient outweighs the potential side effects. However, side effects are still a difficulty for many people on treatments. Over half (56%) of the people who had stopped taking treatments identified side effects as a difficulty. One-quarter (25%) of those who had stopped taking treatments cited the severity of the side effects as one of the reasons for stopping. Side effects were also the cause or temporary breaks from treatments (19.6% of those who had ever taken a treatments break cited the severity of side effects as a reason for this), and also the cause of changing treatment combinations (41% had done so as a result of side effects being too severe).

Side effects often occur in the first two to eight weeks after starting a new treatment, after which time they gradually go away. These are known as induction side effects. Sometimes the side effects can continue past this initial period. They are then called chronic or persistent side effects. Other drug-related side effects only arise after taking treatments for a long period of time. These are called long-term toxicities or long-term side effects.

AFAO has produced a booklet dealing specifically with the management of side effects. It provides suggestions on how to prevent, manage, reduce or eliminate these effects through the use of medicines, complementary and supportive therapies, or other practical measures.

Writing a booklet about managing side effects with complementary therapies is a challenging task. Compared with antiretroviral therapies, complementary therapies have not been proven to be effective or safe through specific and rigorous studies. The strength of evidence in suggesting their use varies, and use of some complementary therapies may be based on anecdotal evidence or limited studies into their benefits for side effects. Further, the efficacy of such therapies can be subject to wide patient variability, just as side effects from drugs vary among individuals. Not all complementary therapies are regulated and some may not be standardised in terms of purity, dosage, effectiveness or safety.

The resource contains useful information about managing side-effects through complementary therapy, medical and drug treatments. It is organised by type of side-effect rather than by specific HIV drug (or drug class), and covers effects such as diarrhoea, headache, peripheral neuropathy, fatigue, anaemia, night sweats, skin problems, blood sugar changes, cholesterol, and liver and kidney problems. The resource then provides information on complementary and supportive therapies, medical and drug treatments, and special precautions and considerations for each side-effect. Also included is an extensive glossary of terms and information about how to find a qualified practitioner in various complementary medicine modalities.

However, many of the symptoms listed in the booklet can happen to anybody, regardless of HIV status. They could be caused by other health problems such as poor nutrition, injury, infections and even ageing. It’s important that the exact nature and cause of the side effect/s is determined. For this reason, the booklet is intended to be a guide only and the information it contains should not be considered a replacement for professional advice. People using the booklet should also consult a doctor or health care provider before commencing any treatments or complementary therapies.

Dean Murphy works as an Educator at AFAO. AFAO would like to acknowledge and thank Peter Watts of Queensland Positive People for all his work on this project.

For research statistics on treatment side effects see: HIV futures five: Life as we know it. Grierson, J., Thorpe, R. and Pitts, M. Melbourne, The Australian Research Centre in Sex, Health and Society, La Trobe University. 2006

If you would like a copy of Managing Side Effects contact the Positive Life NSW office on 9361 6011 or 1800 245 677 or email admin@positivelife.org.au