Introduction

This is the fourth edition of a booklet that was first produced in 2001.

Over 65,000 copies have been distributed in the UK and it has been translated into over 20 languages including Spanish, Italian, Chinese, Bulgarian, Portuguese, Hindi, Nepali, Romanian and Russian.

We now focus on the most commonly used and recommended treatments, including new and recently approved drugs.

• The first section of this guide includes general information, including recording side effects, communication with your doctor and your rights as a patient.
• The second section includes specific information on each side effect or set of symptoms. We have included the range of approaches for managing each side effect, including regular medications and alternative treatments where appropriate. We have also included information related to HIV and long-term health – for example heart disease and bone health – even though these are less likely to be a side effect of HIV drugs.
• Finally, there is a short list of recommendations for further reading. These links will help you find addional information and will help you keep up-to-date with future research.

This booklet will help you get the most out of your relationship with your doctor and other health professionals.

It should help you get better medical care and improved health. It should help you feel more in control of your treatment, and, most importantly, to get a better quality of life.

It has been written by people who are HIV-positive. We have been on many of these treatments and had many of the side effects.Wehave also learnt to negotiate our own health care in the NHS with hospitals and clinics.

Managing side effects is something that you need to be active about.

Every drug will cause some side effects in some people. But not everyone will get the same side effects with the same drugs. Although you may have difficulty with one treatment, there is nearly always something you can do about it: by altering the dose, changing to another drug, or using another drug to treat the side effect.

However, many people do not receive as much help in managing side effects as they need.

This may be because of poor communication when you see your doctor. This may be because there is not enough time, or perhaps your doctor doesn’t understand exactly how you are affected. Sometimes you may just forget to mention a problem. Ways of improving this communication are included throughout this booklet.

Sometimes, if side effects continue for several months, you may think it is easier not to mention them at all or to just put up with them. This is not a good approach as they may be symptoms of a more serious illness. Newer treatments may also have become available since you first reported them, which you may not know about.