What You Should Know About When to Start and What Meds to Use

Table of Contents

• Using This Booklet
• How Is Today Different From Earlier in the Epidemic?
• Understanding the Details of HIV Treatment
  • When to Start: Some General Issues
  • HIV Treatment Guidelines
  • When to Start: CD4 Count Ranges
  • The Possible Benefits of Starting Treatment at 350-500 CD4s
  • The Possible Risks of Starting Treatment at 350-500 CD4s
  • The START Study
  • Classes of HIV Meds
  • A Brief Overview of the Five Classes of HIV Drugs
  • Choosing Your First and Maybe Second Regimen
  • Recommended Regimens for First Line Treatment
• Your Ability to Start and Maintain
  • Keeping Up With Taking Meds
  • Side Effects
  • Drug Interactions
  • Women and HIV Treatment
  • Power of the Mind
• Getting Ready to Start HIV Treatment
  • Is Your Doctor Experienced in Treating HIV?
  • Important Questions
  • Managing Your Quality of Life
  • Checklist for Getting Started
  • Online Resources That May Help
• Personal Tracking Charts (PDF)

Using This Booklet

Getting the earliest possible treatment is generally recommended for most illnesses. Biologically, there's little reason to think that HIV is any different, except that once it's started treatment is for life. But knowing the best time to start HIV meds is the subject of a great deal of debate and theory. On one hand, the question can be a matter of personal choice. But on the other, a growing body of evidence shows it may be more beneficial to start earlier.

Some experts believe that starting treatment is appropriate immediately after finding out your HIV diagnosis. Waiting might allow the virus to progress further and do more damage to your immune system. Starting earlier may prevent losing important CD4 cells that direct immune function.

However, some doctors recommend starting later. They believe it's better to save drugs for later, when symptoms of disease or damage to the immune system have shown. In this case, treating too early may “use up” the drugs before they're most needed.

People may also have long-term side effects from the drugs before they're most needed. Since HIV drugs have not been used over several decades, their true long-term effects are unknown. Most doctors would agree that it's necessary to start meds when HIV symptoms are present, your CD4 count is falling, or your viral load is high and rising.

Whether you start earlier or wait, your willingness to commit to treatment over the long-term, as well as learning about all your options ahead of time, will influence how well you do. Unless you were diagnosed with late-stage disease, you likely have time to get informed about about when to start and what meds to use. This booklet can help. We offer this information to help support, but not replace, the relationship with your health provider.

How Is Today Different From Earlier in the Epidemic?

Treating HIV is very different today than what it was earlier in the epidemic. People are now healthier and living longer on HIV meds, and many can start with a full regimen of just one or two pills taken once or twice a day. The days of taking 30 pills a day are over for most. There are also fewer food restrictions. You have more drugs to choose from and they're generally easier to take and tolerate.

Perhaps some of the things you believe about today's medicines are not -- or are no longer -- true. Concerns still linger in the community about severe side effects and how someone may look after being on meds for awhile. Newer regimens generally have fewer and more manageable side effects, both in the short-term and over time. This doesn't mean that you won't have side effects, but in general they occur less often and are less severe. The drugs that caused the most problems are now seldom used for people starting treatment.

While body shape changes such as sunken cheeks, extended belly or enlarged breasts still occur in some people, they happen less often and to a lesser degree today. The early NRTI drugs like Videx and Zerit contributed to fat loss in the face, arms and legs (called lipoatrophy). Newer drugs generally cause less of this.

What hasn't changed is that HIV remains a serious condition. Although HIV meds cannot get rid of the virus completely, they slow the course of disease, preserve health and quality of life, and improve survival.