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Treatment Decisions for HIV

for Veterans and the Public

Treatment Decisions for HIV: Entire Section

Treatment Decisions

HIV is a virus that can multiply quickly in your body and damage your immune system. Your immune system is what allows your body to fight off infections and cancers. Without treatment, HIV can make your immune system very weak. When it is weakened, you will have a hard time staying well.

Even though we do not yet have a cure for HIV, there are many different drugs that can shut down the HIV virus, greatly slow down the damage it does, and allow the immune system to recover. Effective treatment allows most people to live long and healthy lives, and essentially prevents transmission of HIV to sex partners.

It is important to talk through treatment decisions with your provider.

This lesson provides information on:

  • Starting therapy
  • What drugs to take
  • Whether to continue therapy

Starting therapy

HIV drugs are essential in keeping people healthy over the years. Effective treatment stops or slows the progression of HIV and has important benefits, even for persons whose immune systems appear to be functioning well. HIV drugs are recommended for ALL people with HIV infection. Starting treatment as soon as possible after someone is diagnosed with HIV is better than delaying, so long as you are ready to start.

Studies show that starting treatment early is the most effective way to prevent long-term consequences of HIV. And, treatment that suppresses the HIV virus can prevent transmission (spread) of HIV to sex partners (or injection drug use partners); for pregnant women, it can prevent infection of the baby in the womb or at birth.

There a few things to know about as you think about starting treatment. First, the current drug regimens usually are very simple (between 1 and 3 pills per day), and they work very well, so long as you take them every day. Second, it's really important to take the medicines correctly every day or the virus may become resistant to the drugs. That means the virus may change in a way that makes the drugs no longer work. The most common cause of drug resistance is not taking medications correctly every day. So, people need to be ready to commit to taking the medications every day (we call this "adherence"). And third, HIV medicines, like any other drugs, may cause side effects in some people. But people who take the newer HIV drugs usually do not have any problems with them. If you do have side effects, let your providers know so that they can work with you to solve this problem.

So, as we said earlier, treatment is recommended for all people with HIV. Experts generally advise starting treatment soon after you are diagnosed with HIV, and your provider may even offer you treatment on the same day you receive your diagnosis. Here are some things your provider may consider in advising you about when to start:

  • Symptoms of HIV disease (also called your clinical status, or how well you feel)
  • Your CD4 count and HIV viral load
  • Whether you have certain other medical conditions that may be helped by HIV treatment
  • Whether you can and will stick to your treatment plan (adherence)
  • Whether you have sex partner(s) who are HIV-negative and may be at risk of becoming infected through you
  • Whether you are pregnant or wish to become pregnant soon

We will look at each of these more closely.

Symptoms (clinical status)

"Clinical status" refers to how well you are doing in general, including how well you feel. Your provider will look at whether you have symptoms of HIV disease. These symptoms are signs that HIV is weakening your immune system, and include things such as weight loss, chronic fevers, and opportunistic infections. (Opportunistic infections--also called OIs--are infections that can happen in someone with a damaged immune system.)

CD4 count and viral load

Even though you may not feel it, when you have HIV, the virus and your immune system are at war with each other. The virus is trying to multiply as fast as it can, and your body is trying to stop it. Two tests, the CD4 count and the HIV viral load, help you and your provider know how strong your immune system is, and whether it is keeping HIV under control.

CD4 cells play a major role in helping your immune system work properly. HIV causes disease by killing off CD4 cells. It does this by infecting the cells and turning them into virus factories. The CD4 count tells us how many CD4 cells you have. The higher the number, the better.

The HIV viral load test indicates how much of the HIV virus is present in your blood, and how fast it is multiplying. The higher the viral load, the faster HIV is infecting and killing your CD4 cells. The lower the viral load, the better.

Your provider will look at these two things carefully. People whose CD4 count is low, and people whose viral load is high, are more likely to get sick sooner than people with a high CD4 count and low viral load.

CD4 count and viral load tests usually are done before treatment is started and then regularly while someone is on treatment. As we said earlier, HIV medicines are recommended for everyone, no matter how high or low their CD4 count is. And HIV treatment is especially urgent if your CD4 count is lower, or if you have symptoms. For more information about CD4 count and viral load, go to Understanding Laboratory Tests.

Whether you have certain other medical conditions that may be helped by HIV treatment

Starting HIV drugs may be particularly important for people with certain other medical conditions. For example, your provider will recommend HIV treatment if you are pregnant or plan to become pregnant, if you have kidney disease that is caused by HIV, or if you have hepatitis B or hepatitis C.

Whether you can and will stick to your treatment plan (adherence)

Before you start medications for HIV, it is very important to make a strong commitment to sticking to a drug treatment plan (or regimen). With an HIV drug regimen, you need to take medicines every day!

In order for the drugs to work and keep working, you must carefully follow the directions for taking them. If you're not sure you can do this, you might need help in finding ways to stick to the plan.

If you are wondering whether you should start taking treatment for HIV, talk with your provider as soon as possible. Depending on your specific needs, your provider can come up with a personal treatment plan for you.

Risk of transmitting HIV: to sex partners or during pregnancy

HIV treatment has been shown to greatly reduce the risk of transmitting HIV to uninfected sex partners. In fact, if you take your medicines every day and your HIV treatment is working well, there is almost no risk of transmitting HIV to a sex partner. Thus, if you have a sex partner who is HIV negative, you may consider starting HIV treatment both to protect and improve your own health and to prevent transmission to your partners. Similarly, if you are pregnant or intend to become pregnant, it is important to start HIV treatment right away both to protect your own health and to reduce the risk of passing HIV to the baby during pregnancy or at the time of birth.

Deciding what drugs to take

Your provider will talk with you and together you will come up with a personal treatment plan. You may find it easier to understand your plan if you learn about the different drugs available and what they do.

Print out these questions to ask your health care provider when you start to discuss particular drugs.

What kinds of drugs are available?

HIV drugs are also called antiretroviral drugs or antiretrovirals (ARVs). A whole treatment regimen is called antiretroviral therapy, or ART. The ARVs work because they attack the HIV virus directly--they cripple the ability of the virus to make copies of itself. Usually an ART regimen consists of 3 different medicines from at least 2 classes (types) of drugs. This is because it takes a powerful combination of medicines to suppress the HIV virus.

There are 5 main classes of HIV drugs:

  • Nucleoside Reverse Transcriptase Inhibitors (NRTIs or "nukes")
  • Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs or "non-nukes")
  • Integrase Inhibitors
  • Protease Inhibitors (PIs)
  • Entry Inhibitors

Each group attacks HIV in its own way and helps your body fight the infection. Most of these drugs come as tablets or capsules. Several of these drugs may be combined into one tablet to make it easier to take your medications. These are known as fixed-dose combinations or single tablet regimens.

The following is a short description of how each group of drugs works.

Nucleoside Reverse Transcriptase Inhibitors (nucleoside analogues, NRTIs or nukes)

When the HIV virus enters a healthy cell, it attempts to make copies of itself. It does this by using an enzyme called reverse transcriptase. The NRTIs work because they block that enzyme. Without reverse transcriptase, HIV can't make new virus copies of itself.

Non-nucleoside Reverse Transcriptase Inhibitors (NNRTIs, non-nukes, or non-nucleosides)

These drugs also prevent HIV from using reverse transcriptase to make copies of itself, but in a different way.

Protease Inhibitors (PIs)

(pronounced "pro-tee-ase")

Once HIV has infected a cell and made copies of itself, it uses an enzyme called protease to process itself correctly so it can be released from the cell to infect other cells. These medicines work by blocking protease.

Integrase Inhibitors

This class of anti-HIV drugs works by blocking an enzyme (HIV integrase) that the virus needs in order to insert copies of itself into human DNA.

Chemokine Coreceptor Antagonists (CCR5)

To infect a cell, HIV must bind to two types of molecules on the cell's surface. One of these is called a chemokine coreceptor. Drugs known as chemokine coreceptor antagonists block the virus from binding to the coreceptor.

Entry Inhibitors

The entry inhibitors that are currently available work in different ways, by preventing HIV from entering the CD4 T cell, blocking HIV from binding to the CD4 receptor, or blocking HIV from binding to a coreceptor.

Multi-class drug combinations

There are a number of combination tablets that include drugs from two different groups in a complete HIV drug regimen. A patient prescribed one of these combinations typically takes only one tablet, once a day. You and your provider can decide whether these drug combinations are right for you.

Which drugs should you take?

Now that you have learned a little about the types of drugs that are available and how they work, you may be wondering how your provider will know which treatment you should take.

HIV drugs are used in combination with one another in order to get the best results. The goal is to get the viral load as low as possible (to levels that are undetectable by standard laboratory tests) for as long as possible.

HIV drugs do different things to the virus — they attack it in different ways — so using combinations works better than using just one by itself. Combinations usually include three antiretroviral drugs. Except in very special circumstances, anti-HIV drugs should never be used one or two at a time. Using only one or two drugs at a time can fail to control the viral load and let the virus adapt (or become resistant) to the drug. Once the virus adapts to a drug, the drug won't work as well against the virus, and maybe it won't work at all.

There is no one combination of HIV drugs that works best for everyone. Each combination has its pluses and minuses.

So, how will your provider know which combination to choose? You and your provider can consider the options, keeping certain things in mind, such as possible side effects, the number of pills you'll need to take, and how the drugs interact with each other and with other medications you may take.

Print out these questions to ask your health care provider so that you will be ready to discuss combination therapy.

Combination therapy

So, how will your health provider know which combination to choose? You and your VA provider can consider the options, keeping certain things in mind, such as possible side effects, the number of pills you'll need to take, and how the drugs interact with each other and with other medications you may take.

Print out these questions to ask your health care provider if you are considering combination therapy.

Sticking to Your Medicines (Adherence)

"Adherence" refers to how well you stay on your treatment plan--whether you take your medications exactly as your provider tells you.

If you follow your provider's instructions, the HIV drugs will work well to lower the amount of virus in your blood. Taking your drugs correctly increases your likelihood of success.

But, if you miss doses, or don't follow a regular schedule, your treatment may not work, and the HIV virus may become resistant to the medicines.

Before you start a treatment plan, you should:

  • Get your provider to write everything down for you: names of the drugs, what they look like, how to take them (for example, with food or not, with other medications or not), and how often to take them. This way, you'll have something to look at in case you forget what you're supposed to do.
  • With your provider's help, develop a plan that works for you.

Pop question: True or false. Missing doses and not following a regular schedule can lessen the effect of your HIV medication.

Answer: TRUE. Missing doses and not following a regular schedule can lessen the effect of your HIV medication. It is very important that you stay on your treatment plan and follow your provider's instructions for taking your medicine.

Questions to ask about each drug

One of the most important things you can do to make sure you take your medicine correctly is to talk with your medical provider about your lifestyle, such as your sleeping and eating schedule. If your provider prescribes a drug, be sure and ask the following questions (and make sure you understand the answers):

  • What dose of the drug should be taken? How many pills does this mean?
  • How often should the drug be taken?
  • Does it matter if it is taken with food, or on an empty stomach?
  • Does the drug have to be kept in a refrigerator?
  • What are the possible side effects of the drug?
  • What should be done to deal with the side effects?
  • How severe do side effects have to be before a provider is called?

During every medical visit you should talk about whether you are having trouble staying on your treatment plan. Studies show that people who take their medicine in the right way get the best results: their viral loads stay down, their CD4 counts stay up, and they feel healthier.

Tips for staying on your treatment plan

Before you start a treatment plan, you should:

  • Get your health care provider to write everything down for you: names of the drugs, what they look like, how to take them (for example, with food or not, with other medications or not), and how often to take them. This way, you'll have something to look at in case you forget what you're supposed to do.
  • With your provider's help, develop a plan that works for you.

Other challenges you might have while on HIV therapy

Now that you've thought about adherence and some of the other factors you should consider before starting HIV drug therapy, let's look at some of the other things you will need to know once you are taking the medicine. These involve drug interactions and drug side effects.

What are drug interactions?

Your HIV medications can be affected by other medicines, including other prescription drugs you are taking and drugs you buy over the counter at a pharmacy. Even herbal therapies, nutritional supplements, and some things found in common foods can affect your HIV medicines.

When one drug affects how another drug behaves, this is called a drug-drug interaction. For example, some drugs become less effective or cause side effects when they are taken with certain other drugs.

When something in food affects how a drug behaves, it is called a drug-food interaction. For example, grapefruit juice, taken at the same time as certain drugs, can boost the amount of these drugs in your bloodstream to an undesirable level. Everyone taking HIV drugs needs to be very careful about these interactions. Luckily, many of these interactions are well known to your provider and can be managed.

Your provider can give you a list of drugs and foods to avoid, depending on what treatment you are taking. Ask for this information for each drug that you are taking.

Also, be sure that you tell your provider about every single medication, drug, supplement, and herb you are taking--whether you got them by prescription or not.

How do you deal with side effects?

Some side effects can be hard to deal with. One way to cope with them is to know what to watch out for and have a plan to deal with problems that come up.

That's why you need to talk to your provider about the risk of side effects from different drugs, before you start therapy.

At the beginning of any treatment, you go through a period of adjustment--a time when your body has to get used to the new drugs you're taking. Sometimes you'll have headaches, an upset stomach, fatigue, or aches and pains. These side effects may go away after a few days or a few weeks.

If you notice any unusual or severe reactions after starting or changing a drug, report the side effects to your provider immediately.

More information is available in the Side Effects Guide.

How do you know if the drugs are working?

After you've started taking drugs for HIV, your provider will look at how much HIV virus is in your bloodstream (your viral load) to see how well the drug therapy is working. If the drugs are working, your viral load goes down. You will have less of the virus in your bloodstream. A very important goal of treatment is to reduce the viral load to below the level that can be counted by laboratory tests, and to keep it there. This sometimes is called an "undetectable" level of HIV.

Other ways you and your provider can see if the drugs are working are:

  • Your CD4 count. This number should stay the same or go up if your drugs are working.
  • Your health checkups. Your treatment should help keep you healthy and help you fight off infections and diseases.

Should you ever take a 'holiday' from the drugs?

Taking a "drug holiday" from your HIV treatments for reasons other than a severe reaction to medications may be harmful to your health. Having said that, your provider may suggest that you temporarily stop your antiretroviral drugs for certain specific reasons. Be sure to talk with your provider about this issue if you have questions about it. How you stop taking your HIV drugs safely can be a complicated process.

Remember, just skipping doses without your provider's instruction is dangerous; you should never change your treatment plan without talking with your provider.

Should you ever switch the drugs you're taking?

You should never change the drug plan you're on without talking with your provider. This is a very important decision and one that must be made with your provider.

There are a few reasons that your provider may suggest you change your medicines. There may be a fixed-dose combination pill that could simplify your therapy. Or your treatment may not be working well enough and you may need different medicines. Or you may have side effects that are bothering you, or lab tests that show signs of ill effects from the HIV drugs (this is called drug toxicity).

Before changing medicines, you and your provider should talk about:

  • All the HIV drugs you have taken before and the ones you haven't taken
  • Any drug resistance your HIV virus may have
  • Possible side effects of the new medicines
  • How well you will be able to follow the new drug treatment plan

Always be sure to talk with your provider about any changes in your drug treatment.

If the viral load is undetectable, can you stop treatment?

No! Having a viral load below levels that laboratory tests can measure (an "undetectable" viral load) tells us that the HIV drugs are working. An undetectable viral load doesn't mean the HIV virus is gone from your body, though. Even though the virus is not detected in the blood, it is still present in other parts of your body, such as the lymph nodes, brain, and reproductive organs. If you stop treatment, the virus will start reproducing again and your viral load will increase, putting your health at risk.

What if your treatment isn't working?

Sometimes the HIV medications don't work. This may occur because the drugs don't completely stop the virus from reproducing. As the virus makes copies of itself, changes (or mutations) sometimes occur. These changes may result in a new strain of the virus that is resistant to the action of the drugs. If your providers think this has happened, they will do a blood test (called a resistance test, genotype, or phenotype) that can help show which drugs the virus has become resistant to. This can help identify other drugs that might still work against your virus.

If a person has a strain of HIV that is resistant to most or all available drugs, that person may want to consider joining a clinical trial that is testing new drugs that have not yet been approved by the U.S. Food and Drug Administration (FDA). See Clinical Trials.


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