Patient education: Initial treatment of HIV (Beyond the Basics)
- John G Bartlett, MD
John G Bartlett, MD
- Editor-in-Chief — Infectious Diseases
- Section Editor — HIV; Pulmonary Infections
- Professor Emeritus
- Johns Hopkins University School of Medicine
- Paul E Sax, MD
Paul E Sax, MD
- Clinical Director, Division of Infectious Diseases
- Brigham and Women's Hospital
- Professor of Medicine
- Harvard Medical School
HIV TREATMENT OVERVIEW
Finding out that you have HIV infection can be an overwhelming experience, filled with worry about the future, concern for loved ones, and fears of dying. However, current treatment regimens have significantly improved the prognosis of HIV infection. In fact, living with HIV is similar to living with other chronic diseases, such as diabetes or high blood pressure; when HIV is closely monitored and treated, it is usually possible to have a near-normal lifespan.
This topic discusses treatment options for HIV, including general information about when to start treatment and issues to consider when starting treatment. A discussion of treatments to prevent opportunistic infections is available separately. (See "Patient education: Preventing opportunistic infections in HIV (Beyond the Basics)".)
WHO TREATS HIV?
Anyone who is diagnosed with HIV is best managed by a doctor who specializes in the care of people with HIV or AIDS. Physicians in your area usually know the best local doctors who are experts in HIV care.
WHEN TO START HIV TREATMENT
Expert groups recommend starting all people with HIV infection on treatment (called antiretroviral therapy) regardless of their T cell count (which indicates how healthy the immune system is).
●Antiretroviral therapy (ART) reduces the risk of dying as well as the risk of serious AIDS- and non-AIDS-related complications (such as cancer, premature heart disease, a decline in cognitive function, and premature aging).
●ART treatment also prevents transmission of HIV to others. Successful treatment nearly eliminates the risk of transmission to an unborn child during pregnancy or sexual transmission to an uninfected partner. (See 'Pregnancy' below and 'Sexually active individuals' below.)
The urgency to start treatment depends upon several factors, including your T cell count, age, underlying medical conditions, history of an AIDS-defining illness, risk of transmitting HIV to others, and willingness to commit to lifelong treatment. Each of these factors is discussed in detail below. (See "When to initiate antiretroviral therapy in HIV-infected patients".)
T cell count — T helper cells, also known as CD4 T cells, are white blood cells that help to organize the immune system. A low T cell count indicates that your immune system is not healthy and that there is a significant risk of developing an opportunistic infection. An opportunistic infection is one that is uncommon in people with a healthy immune system but can develop as the immune system fails.
A person with HIV infection gradually develops lower T cell counts over time as the immune system weakens. The lower the T cell count, the higher the risk of developing opportunistic infections. These infections are more likely to occur in people with T cell counts <200 cells/microL. When the T cell count drops below 200 cells/microL, the person is said to have AIDS.
Over the last several years, guidelines have evolved regarding the optimal time to start HIV therapy. Several years ago, treatment was recommended only in patients who had fewer than 350 T cells/microL or symptoms related to HIV. Subsequently, the T cell threshold was increased to 500 cells/microL. Expert groups now recommend starting patients with HIV on treatment at any T cell count.
Although ART can benefit HIV-infected individuals regardless of their T cell count or the presence of symptoms, the urgency to start treatment is based to a large extent on the T cell count. The lower the T cell count, the more urgent it is to start treatment. The normal T cell count is 500 to 1400 cells/microL. When it is below 350 cells/microL, the risk of serious infectious disease complications increases, and this risk further increases the more the T cell count drops. People with T cell counts below 200 should start treatment on a relatively urgent basis, preferably within one to two weeks of receiving the diagnosis.
On rare occasions, if the T cell count is high, treatment may be temporarily delayed (for example, if you are planning a long trip or have other medical conditions that need attention first). If you and your doctor or nurse decide to wait to start ART, be sure you are followed closely and get regular laboratory testing (every three months) to monitor for new AIDS-related problems (eg, thrush, weight loss) or a rapid decline in your T cell count, which would indicate the need to start treatment right away.
Age — Studies have shown untreated HIV-infected patients over the age of 50 develop AIDS faster, and do not survive as long after being infected with HIV, compared with younger people. In addition, patients older than 50 years have a higher risk of non-AIDS-related complications and reduced T-cell responses to ART. (See "HIV infection in older adults".)
Pregnancy — ART is recommended as soon as possible for all HIV-positive women who are pregnant, regardless of their T cell count. If you have HIV and are pregnant, taking ART can significantly decrease the risk that you will transmit HIV to your infant during pregnancy or birth. Detailed information for patients about pregnancy and HIV treatment is available separately. (See "Patient education: HIV and pregnancy (Beyond the Basics)".)
Sexually active individuals — People who are HIV-positive and sexually active with a partner(s) who is HIV-negative should start ART to decrease the risk of transmitting the infection, regardless of their T cell count. The probability of transmitting the infection correlates with the amount of virus in your blood. With "no detectable virus," the risk is very small, but may not be zero.
Safe sex (using condoms every time) also significantly reduces your risk of transmitting HIV. Another option is pre-exposure prophylaxis (PrEP); this involves giving HIV drugs to your uninfected partner until you have achieved "no detectable virus." This is something they should discuss with their own primary care providers.
Underlying medical conditions — Immediate initiation of ART is often recommended for people with certain underlying medical conditions. This includes the following conditions:
●HIV-associated nephropathy (kidney disease caused by HIV)
●HIV-associated changes in brain functioning
●Hepatitis B or hepatitis C
●Certain HIV-related infections that are likely to resolve more quickly with ART
AIDS-defining illnesses — AIDS-defining illnesses are diseases or conditions that are uncommon in people with a healthy immune system, but can develop in people with a severely weakened immune system (as a result of AIDS). Many of these illnesses are infections of various types. ART should be started by anyone who has a current or past history of one or more AIDS-defining illnesses.
Patient preference — As outlined above, the decision of when to start ART depends on the person’s individual situation. However, for most people, the benefits of initiating treatment (reducing the risk of dying or developing complications, and preventing transmission to others) outweigh the downsides (which may include side effects of the medications as well as having to take pills every day) and cost.
Some issues to consider include:
●Although the chances of becoming ill or dying from an HIV-related condition are small when your T cell count is greater than 500 cells/microL, treatment decreases the risk of developing complications, including opportunistic infections, cancers, premature heart disease, and/or brain dysfunction, which may be related to uncontrolled HIV in the body.
●Once ART is started, you will need to take it for the rest of your life. Stopping treatment has no clear benefit, and most people will develop an increased viral load and a decreased T cell count when off ART.
●Taking HIV drugs inconsistently (eg, not on time every day) can sometimes lead to drug resistance, which may eventually limit the number of drugs that work to keep your disease controlled. The likelihood of drug resistance depends upon which medicines you take and how many days or weeks of pills you miss.
If you feel that you are not able to take a daily medication, your doctor or nurse can work with you on strategies to take your medication without missing doses.
PREPARING FOR HIV TREATMENT
Before starting treatment, you will have blood tests and a complete physical examination. These tests can help to determine whether you have any underlying HIV-related infections or other illnesses. In addition, testing is recommended to determine whether your virus is resistant to any HIV medications and to ensure that the most effective anti-HIV treatments are used.
There is no one medication regimen that is "best" for all patients. The following factors are important to consider:
●How many pills will I need, and how many times per day will I take a dose? Pills that contain a combination of two or three drugs are available and can reduce the number of pills you need to take per day. Most initial treatment regimens require one to three pills per day.
●Do I need to take the medicine at a certain time or with/without food? It can be difficult for some people to take their medicines on time, depending upon work, school, or family obligations. Having to take the medicine on an empty stomach or with food can make it even more difficult to take the medicine correctly. However, many of the medicines used for HIV have no special food requirements.
●Are the medicines covered by insurance or government programs? If yes, is the co-pay affordable? If no, are there alternatives that are covered? Given that the medications will be needed indefinitely, it is important to be sure they are affordable. HIV specialists and their team members (including nurses, social workers, and other office staff) should be able to refer you to programs that help people pay for their HIV treatment.
●What are the possible short-term and long-term side effects of the medicines? It is important to be aware of the potential side effects of your HIV medicines. Your doctor or nurse should describe the most common side effects.
●Are there any potential drug interactions with my current medicines? HIV medicines can interact with other medications, which can cause the medication to be less effective or have more side effects. For example, some HIV medications increase the levels of steroids that your body gets from steroid inhalers used for asthma or allergies.
●Will this medicine affect my other illnesses (eg, hepatitis, diabetes, heart disease)? A minority of patients taking HIV medicines will develop drug-related liver inflammation. This risk is increased in patients with underlying chronic viral hepatitis. People who have hepatitis should be aware of potential medicine-related side effects, including nausea, vomiting, right upper abdominal pain, fatigue, loss of appetite, and yellowed skin or whites of the eyes. Report these problems to your doctor or nurse immediately.
●If you are female, are you considering becoming pregnant in the future? One medicine, efavirenz, is not recommended during early pregnancy due to the risks to the developing baby in the first trimester. A discussion of HIV and pregnancy is available separately. (See "Patient education: HIV and pregnancy (Beyond the Basics)".)
HOW DO HIV MEDICATIONS WORK?
Human immunodeficiency virus (HIV) is a retrovirus. Retroviruses contain several targets that are disrupted by medicines that treat HIV,
Medicines used to treat HIV are called antiretroviral drugs. These are usually given as a combination of three drugs. There are several classes of antiretroviral medicines:
●Nucleoside or nucleotide reverse transcriptase inhibitors (NRTIs)
●Integrase strand transfer inhibitors (INSTIs)
●Non-nucleoside reverse transcriptase inhibitors (NNRTIs)
●Protease inhibitors (PIs)
●Fusion inhibitors (not generally included in initial treatment)
●CCR5 antagonists (not generally included in initial treatment)
The decision about which medications to use will depend on many issues, such as whether or not you have any drug resistance to any HIV medications.
Once started, HIV treatment is lifelong unless a cure for HIV is discovered. Current HIV medications are less toxic than earlier HIV medications, and the combination regimens are easier to take. However, you must take your medicines regularly. Taking a "break" from treatment can significantly increase your risk of developing drug resistance. Be sure to tell your doctor or nurse if you need to stop because of an illness, surgery, or loss of insurance. Be certain to refill your medications on time.
Goals of therapy — The following are goals of antiretroviral treatment for HIV:
●Suppress HIV multiplication. The goal is to have no detectable virus in the blood for as long as possible. At this level, the virus is essentially "shut down."
●Improve quality of life
●Preserve future treatment options, meaning that there will be drugs available if you develop side effects or resistance to some drugs
●Restore immune function (as indicated by T cell count) (see 'T cell count' above). The goal is to have the T cell count increase by 100 to 200 cells/microL during the first few years of treatment and then remain high.
●Prevent HIV transmission to others.
●Provide a treatment regimen that suppresses HIV but is also "patient friendly" in terms of tolerance and patient preference in terms of pill numbers, pill size, and frequency of administration.
ART regimens — ART regimens typically consist of two NRTIs plus a third agent (either an INSTI, a PI, or an NNRTI). A small dose of a boosting agent may be given to "boost" the levels of certain drugs.
There are many different regimens, and each category of medication contains multiple drugs. Your doctor will work with you to determine the most appropriate regimen for you. Each medication has specific dosing instructions and side effects, and some may have interactions with other prescription, nonprescription, and herbal medications.
This section provides information about the different types of antiretroviral medicines.
Nucleoside/nucleotide reverse transcriptase inhibitors (NRTIs) — NRTIs are incorporated into the DNA of HIV, which helps to prevent the virus from copying itself. Pills that contain a combination of NRTIs are often recommended to reduce the number of pills you must take. Commonly used combination NRTIs include tenofovir disoproxil fumarate-emtricitabine and abacavir-lamivudine. A blood test is recommended before starting abacavir, to determine whether you are at risk for developing a serious allergic reaction.
Integrase strand transfer inhibitors (INSTIs) — Integrase is an enzyme that HIV requires to make copies of itself. INSTIs prevent this process from happening. Three INSTIs (raltegravir, elvitegravir, and dolutegravir) are effective in patients who are starting their first HIV regimen, as well as those patients who have been treated in the past. INSTIs are a preferred part of treatment for most patients.
Non-nucleoside reverse transcriptase inhibitors (NNRTIs) — NNRTIs inhibit the action of an enzyme, reverse transcriptase, which prevents or limits HIV from copying itself. Commonly used NNRTIs include efavirenz and rilpivirine. Both of these medications can be given as part of a combination pill that can be taken once daily.
Protease inhibitors (PIs) — Proteases are enzymes that HIV requires to copy itself. When protease inhibitors are used, HIV makes copies of itself that cannot infect new cells. This can reduce the amount of virus in the blood and increase the number of T cells. Commonly used protease inhibitors include darunavir and atazanavir. These medications should be administered in combination with another medication (ritonavir or cobicistat) to make sure that you get the right levels in your blood.
Detailed information about the side effects and best ways to take these medicines are available in a separate topic review and at the following AIDS information website (https://aidsinfo.nih.gov/education-materials/fact-sheets). (See "Patient education: Tips for taking HIV medications (Beyond the Basics)".)
WHERE TO GET MORE INFORMATION
Your healthcare provider is the best source of information for questions and concerns related to your medical problem.
This article will be updated as needed on our web site (www.uptodate.com/patients). Related topics for patients, as well as selected articles written for healthcare professionals, are also available. Some of the most relevant are listed below.
Patient level information — UpToDate offers two types of patient education materials.
The Basics — The Basics patient education pieces answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials.
Patient education: HIV/AIDS (The Basics)
Patient education: Starting treatment for HIV (The Basics)
Patient education: Tests to monitor HIV (The Basics)
Patient education: Screening for sexually transmitted infections (The Basics)
Patient education: Vaccines for adults with HIV (The Basics)
Patient education: Reducing the costs of medicines (The Basics)
Patient education: Kaposi sarcoma (The Basics)
Beyond the Basics — Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are best for patients who want in-depth information and are comfortable with some medical jargon.
Patient education: Preventing opportunistic infections in HIV (Beyond the Basics)
Patient education: HIV and pregnancy (Beyond the Basics)
Patient education: Tips for taking HIV medications (Beyond the Basics)
Patient education: Reducing the costs of medicines (Beyond the Basics)
Professional level information — Professional level articles are designed to keep doctors and other health professionals up-to-date on the latest medical findings. These articles are thorough, long, and complex, and they contain multiple references to the research on which they are based. Professional level articles are best for people who are comfortable with a lot of medical terminology and who want to read the same materials their doctors are reading.
Considerations prior to initiating antiretroviral therapy
Drug resistance testing in the clinical management of HIV infection
Factors affecting HIV progression
Modifying HIV antiretroviral therapy regimens
Patient monitoring during HIV antiretroviral therapy
Overview of prevention of opportunistic infections in HIV-infected patients
Initial evaluation of the HIV-infected adult
Selecting antiretroviral regimens for the treatment-naïve HIV-infected patient
When to initiate antiretroviral therapy in HIV-infected patients
HIV infection in older adults
Overview of antiretroviral agents used to treat HIV
Overview of antiretroviral agents used to treat HIV, section on 'Protease inhibitors (PIs)'
The following organizations also provide reliable health information.
●Centers for Disease Control and Prevention (CDC)
Toll-free: (800) 311-3435
●HIV/AIDS Treatment Information Service
Toll-free: (800) 448-0440
●AIDS Clinical Trials Information Service (ACTIS)
Toll-free: (800) 874-2572
Patient support — There are a number of online forums where patients can find information and support from other people with similar conditions.
●About.com HIV/AIDS Forum
- Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Department of Health and Human Services. Available at http://aidsinfo.nih.gov/contentfiles/lvguidelines/AdultandAdolescentGL.pdf (Accessed on May 01, 2014).
- Kitahata MM, Gange SJ, Abraham AG, et al. Effect of early versus deferred antiretroviral therapy for HIV on survival. N Engl J Med 2009; 360:1815.
All topics are updated as new information becomes available. Our peer review process typically takes one to six weeks depending on the issue.