Introduction
HIV treatment is now more effective and simpler to take than it has ever been. It now involves far fewer side effects.
This is the fifth edition of this guide. One of the most important changes for this version has been to remove at least ten pages relating to side effects of older drugs.
With over 25 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 some 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 also problems of ageing. This section also includes links and references.
Earlier editions have been translated into other languages. Many of these are available on this website.
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.
Changes to this edition
This edition includes the following changes:
- It has been updated to include side effects of the latest drugs.
- Information on side effects of drugs that are now rarely used has been reduced in the print edition. This information is now only in the online version. This includes more detailed information on T-20, lactic acidosis, indinavir, d4T and abacavir hypersensitivity reaction. Please go online or call i-Base if you would like this sent to you by post.
- We have expanded information on long-term complications. These may not be side effects but they are essential in getting your best quality of life. For example, the sections on bone and heart problems.
- We have included a new section on HIV and ageing because this an essential part of living well with HIV.
- The guide includes comprehensive references online. There are hyperlinks to over 250 documents organised by subject. These include: the product information for each drug; UK, European and US treatment and management guidelines; and related studies that focus on safety and tolerability of drugs. Whenever possible we selected references that provide free full text access online.
Feedback and comments
We welcome feedback and comments and have developed and online survey.