Welcome the i-Base guide to HIV and your quality of life…

This booklet will help you:

  • Have accurate, up-to-date information about side effects and what to do about them.
  • Get the most out of your relationship with your doctor and other health professionals.
  • Feel more in control of your treatment.
  • Get better medical care and improved health, and
  • Achieve a better quality-of-life.

HIV treatment is now more effective and simpler to take than ever before. It involves far fewer side effects and usually fewer pills.

This is the sixth edition of this guide and we have focussed on the meds that are now most widely used.

With over 26 drugs approved and others in development, you can now aim for the best quality of life. It is not just about your CD4 count and viral load.

Negotiating healthcare

This guide has been written by people who are HIV positive. We have taken many of these treatments and experienced many of the side effects

We also understand some of the practical frustrations of being a patient.

Although you may have difficulty with one treatment, there is nearly always something you can do about it. This includes using another drug to treat the side effect, changing to another HIV drug, or, sometimes, altering the dose.

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

This may be because communication with your doctor is not as good as it could be.

  • Perhaps there was not enough time.
  • Perhaps your doctor didn’t understand exactly how you are affected.
  • Perhaps you just forget to mention a problem.
  • Perhaps you did not think or feel it was important.

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.

  • Something you think is a side effect may be a symptom of a more serious illness.
  • Newer treatments may also have become available since you first reported them.
  • You deserve the best quality of life.

Many other people can also help including nurses and pharmacists.

Outline of this guide

The first section of this booklet includes general information, including how to talk with your doctor and your rights as a patient.

The second and third sections include information on each side effect or set of symptoms or important health topics.

The fourth section focuses on issues that may or may not be directly related to HIV and side effects, but which are related to ageing. This section also includes links and references.

This guide is also online with additional text. Earlier editions have been translated into other languages. Many of these are available on the i-Base website:

www.i-Base.info

Changes to this edition

This edition includes the following changes:

  • It has been updated to include side effects of recently approved drugs.
  • Information on side effects of drugs that are now rarely used has been reduced in the print edition. This information is still available online.
  • We have expanded information about long-term health even if this is not a side effect. This includes the sections on your heart and bone health.
  • We have expanded the sections on HIV and ageing because this an essential part of living well with HIV.
  • We have included new sections on diet and exercise. These are important additions. They explain how to choose a balanced diet and how to be more active – and the impact on your health.
  • The references available online have been updated. This includes more than 380 research studies or clinical guidelines. These are listed by subject with hyperlinks to the online publications.

These include:

  • The product information for each drug.
  • Treatment guidelines (from the UK, Europe and the US).
  • Studies that focus on safety of HIV drugs.

Whenever possible we selected references that provide free full text access online.

If you have a question about anything you read here, you can call the i-Base phoneline or email a question to the online Q&A service.

Feedback and comments

We welcome feedback and comments and have developed and online survey.

surveymonkey.com/s/7CCWBW2

1 July 2012