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Deciding when to start treatment for HIV

• You have options
• Treatment will slow down the disease
• When to start treatment
• More information on deciding when to start treatment for HIV

You have options

If you have HIV, find a doctor you can trust who treats HIV-positive women. If you need help finding one, call your state AIDS hotline or the CDC National AIDS hotline at 800-CDC-INFO (232-4636). This hotline will either point you to a specific doctor or to resources in your area where you can get health care, like a clinic. Your doctor will talk to you about your health. You also will get a physical exam. If you found out about your positive result over the phone from a mail-in testing company, follow up with a doctor to talk about your result.

Just because you are HIV-positive doesn't mean that you will need HIV treatment right now. However, new research shows that starting treatment early may lower your chances of passing HIV to your partner. You and your doctor will decide the best time to start treatment. When to start depends on:

• Your overall health and health history
• The amount of HIV in your blood (viral load)
• How well your immune system is working (CD4 count)
• Your readiness to stick to treatment

Once you start taking anti-HIV drugs, you will need to continue taking them for the rest of your life. Keep in mind: It is important to see your doctor often — even before you start treatment — so you stay as healthy as possible.

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Treatment will slow down the disease

At some point, you will need medicine to slow down the disease and help keep you healthy. Many medicines are used to treat HIV/AIDS. They fall into six classes:

• Nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs) (also called "nukes") – Drugs in this class prevent HIV from making copies of itself.
• Non-nucleoside reverse transcriptase inhibitors (NNRTIs) (also called "non-nukes") – Drugs in this class prevent HIV from making copies of itself.
• Protease inhibitors (PIs) – Drugs in this class block a protein that HIV makes, which also stops HIV from making copies of itself and infecting healthy cells.
• Entry inhibitors – Drugs in this class work outside of the cell to keep HIV from getting into and infecting healthy cells.
• Fusion inhibitors – Drugs in this class work outside of the cell to keep HIV from getting into and infecting healthy cells.
• Integrase inhibitors – Drugs in this class work inside of the cell to keep HIV, which is already inside a cell, from getting started growing.

Because each HIV drug can't work by itself, patients must take a combination of three or more drugs from different classes. When this combination of drugs is taken, it's called "highly active antiretroviral therapy" or HAART. Sometimes, it is also called a "cocktail." When taken properly, HAART helps people with HIV live longer and have fewer infections. The drugs work by lowering the amount of HIV in the blood. They improve your body's ability to fight infections.

There is no single "best" treatment plan. Your doctor will help you decide which combination of medicines is right for you. The names of HIV drugs can be confusing. Many HIV drugs have both a brand name and a generic name. Some also go by a shortened name. For example, Retrovir is the brand name of the NRTI zidovudine (the generic name). This drug also goes by "AZT" or "ZDV." Talk to your doctor if you are unsure which drugs are part of your treatment. Ask your clinic or doctor's office to give you a written list of your medications. The list should include dosages and times to take the medicines. You should keep this list with you at all times.

Many medications and other things can interact with HIV drugs. These interactions can hurt you or make the HIV medicines weaker. So you should tell your doctor if you are using any other prescribed medications. Also, tell your doctor if you are using any recreational drugs, alcohol, herbal remedies, or over-the-counter medicines. Make sure to tell your doctor if you are taking birth control pills or other birth control that contains hormones, such as Depo-Provera (the birth control shot). Some HIV drugs affect how much of the birth control stays in your system. Also, some birth control can make your HIV medicine not work as well. Tell your doctor if you are pregnant or planning to become pregnant. That will affect what treatment is best for you and your baby.

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When to start treatment

Regular checkups will help your doctor monitor your health. Your checkups will likely include a physical exam and lab tests. Tests will check your CD4 count, viral load, and may see if your HIV strain is resistant to any HIV drugs. This information will help your doctor recommend a time to start treatment and come up with a plan. While there is ongoing debate and research about the best time to start, generally, you should start treatment if:

• You have severe symptoms of HIV infection or have been diagnosed with AIDS.
• You have had an AIDS-defining illness.
• Your CD4 count is 350 cells per cubic millimeter or less. Your CD4 count is a measure of your immune system's strength. Treatment should be started before HIV has done too much damage to your immune system. Your doctor may recommend that you start treatment when your CD4 drops below 500. Some experts recommend starting at even earlier stages of HIV disease, when CD4 counts are above 500. Ask your doctor about the benefits and risks of starting treatment at an earlier stage of HIV disease. Make sure to also ask about the importance of sticking to treatment.
• You are pregnant. For treatment guidelines for pregnant women with HIV, see the Pregnancy section.
• You have HIV-related kidney disease.
• You are being treated for hepatitis B or hepatitis C.

Once you start treatment, you may need to continue taking HIV medicines for the rest of your life. So other things you will need to think about before starting treatment include:

• Readiness to stick with treatment. You will need to take all of the drugs exactly how your doctor tells you to. You can't miss any doses. That can result in the virus becoming resistant to the medications. Once this happens, the drugs will not work as well or at all. Resistance to the drug you are taking can also cause resistance to other drugs that you may not be taking. This decreases the number of drugs that are available for you to use to fight your HIV infection. Since one drug isn't strong enough to fight HIV alone, you will have to take several drugs every day. Whether you must take multiple pills or just one pill a day, you must be ready to take all your medicines as directed and stick with it.
• Managing side effects. You will likely have some side effects from the drugs. Some of these are harder to live with than others. Be sure to tell your doctor about any side effects you are having. Only stop taking your HIV medicine because of side effects if your doctor tells you to stop.

There are still a number of things about treatment of HIV that we do not know. This is particularly true for women. Research and clinical trials of what medicines to use and when to start are seeking to answer those questions.

When you begin to discuss treatment options with your doctor, ask about clinical trials. Your doctor can tell you if there are any that would be open to you and how to enroll if you want to participate.

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More information on deciding when to start treatment for HIV

Explore other publications and websites

• Antiretroviral Drugs Used in the Treatment of HIV Infection — This publication lists antiretroviral drugs by brand name and provides their generic name, manufacturer, and FDA approval date.
  http://www.fda.gov/ForConsumers/byAudience/ForPatientAdvocates/HIVandAIDSActivities/ucm118915.htm
• Guidelines for the Use of Antiretroviral Agents in HIV-1-Infected Adults and Adolescents — This report provides treatment guidelines for adult and adolescent HIV. It includes information on when to start antiretroviral treatment, what medications to start with, what medications not to use, and how to manage treatment.
  http://aidsinfo.nih.gov/contentfiles/AdultandAdolescentGL.pdf
• HIV and Its Treatment: What You Should Know — This publication provides information about HIV treatment for people recently diagnosed with HIV. It discusses when to start treatment, the importance of adhering to your treatment, and what to do if regimens fail. Treatment during pregnancy is also discussed.
  http://aidsinfo.nih.gov/contentfiles/HIVandItsTreatment_cbrochure_en.pdf
• Making Decisions About Therapies (Copyright © Project Inform) — This publication talks about what to consider before starting HIV therapy. It discusses how to choose a doctor, why you should learn about all the different treatment options, and when to start therapy.
  http://www.projectinform.org/publications/decisions/
• Strategies for HIV Therapy (Copyright © Project Inform) — This publication discusses how HIV therapy works and offers information for people who are trying to decide when to start HIV medications.
  http://www.projectinform.org/publications/avs/
• Treatment After Exposure to HIV (Copyright © AIDSInfoNet) — This publication discusses how treatment can be given to people who have recently been exposed to HIV so they do not become infected. It also discusses the possible side effects of the treatment.
  http://www.aidsinfonet.org/fact_sheets/view/156?lang=eng

Connect with other organizations

• AIDS InfoNet
  http://www.aidsinfonet.org/index.php
• AIDS.gov
  http://www.aids.gov/
• AIDSinfo
  http://aidsinfo.nih.gov/
• Division of Acquired Immunodeficiency Syndrome, NIAID, NIH, HHS
  http://www.niaid.nih.gov/about/organization/daids/Pages/default.aspx
• HIV/AIDS Programs, HRSA, HHS
  http://hab.hrsa.gov/
• Women Alive
  http://www.women-alive.org

Content last updated July 1, 2011.

Resources last updated July 1, 2011.

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