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.
  • Have information about age-related health issues: diet, exercise, heart disease, bone health and cancer.
  • Feel more in control of your treatment.
  • Get better medical care and improved health, and
  • Achieve a better quality-of-life.

So although everyone worries about side effects before they starting treatment, modern ART actually involves few or no side effects.

When side effects do occur, they are generally mild and short-term.

Getting the right ART is important – it is not just about your CD4 and viral load results.

Looking after your long-term health means making sure you get you the best quality of life.”

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 difficulties of being a patient.

Although you may have trouble 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 might 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 enough to mention.

Sometimes, if side effects continue for several months, you might 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 might be a symptom of a more serious illness.
  • Newer treatments may have become available that you could use.
  • 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 main 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 online version of the guide has additional text compared to the print version.

Earlier versions translated in other languages 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 was reduced in the print edition. This information is still available in this online version.
  • The references available online have been updated. This includes more than 400 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

“Antiretroviral treatment (ART) is now so effective that it is recommended for everyone living with HIV. 

So although everyone worries about side effects before they starting treatment, modern ART actually involves few or no side effects.

When side effects do occur, they are generally mild and short-term.

Getting the right ART is important – it is not just about your CD4 and viral load results. 

Looking after your long-term health means making sure you get you the best quality of life.”

 

1 April 2016