HIV/AIDS
for Veterans and the Public
Treatment Decisions for HIV: Entire Section
Treatment Decisions
Without treatment, HIV can make your immune system very weak. Your immune system is what allows your body to fight off infections and cancers. When it is weakened, you will have a hard time staying well.
Deciding to take anti-HIV drugs is a very personal choice, and one that cannot be made alone. It is important to talk with your VA health care provider, who can help you make a wise, appropriate decision.
This lesson can help you decide:
- Whether to start therapy
- What drugs to take
- Whether to continue therapy
Deciding whether to start therapy
For people whose immune systems are weaker, starting treatment is urgent. Even for people whose immune systems are still relatively strong, it is important to consider starting HIV medications. More and more studies show that starting treatment early may be the most effective way to prevent long-term consequences of HIV. And, treatment dramatically reduces the risk of passing HIV infection to sex partners (or injection drug use partners); for pregnant women, it greatly reduces the chance of infecting the fetus.
However, there are reasons some people may not start taking HIV treatment right away. For one thing, the medications must be taken correctly every day or the virus may become resistant to drugs. That means the virus may change in a way that makes the drug 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"). Also, HIV medicines, like any other drugs may cause side effects in some people. But for most people the newer HIV drugs are quite tolerable. In addition, the current drug regimens usually are simple and compact (between 1 and 3 pills per day).
So, as we said earlier, treatment of HIV is recommended for all people with the infection. In terms of exactly how quickly to start the drugs, these are some of the main things to consider:
- Symptoms of HIV disease (also called your clinical status, or how well you feel)
- Your CD4 count and 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.
Symptoms (clinical status)
"Clinical status" refers to how well you are doing in general, including how well you feel. Your doctor 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 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 health care provider know how strong your immune system is, and know 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, a process that kills the cell. A test called the CD4 count can tell you how many CD4 cells you have. The higher the number, the better. The test, however, doesn't tell you if those CD4 cells are working properly.
The 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 health care 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 every 3 months. Results can help you and your health care provider decide how urgent it is to start anti-HIV drugs. The U.S. Department of Health and Human Services makes general recommendations regarding when HIV-positive people should start taking HIV drugs. These are not firm rules, just guidelines. These guidelines recommend HIV drugs for everyone, no matter how high or low their CD4 count is. However, they say that HIV treatment is especially important if your CD4 count is lower, or if you have symptoms. The lower the CD4, the more important it is to start treatment quickly.
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 doctor will recommend HIV therapy 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)
It is very important to start drug therapy only when you are ready to make a strong commitment to sticking to a drug therapy plan (or regimen). With an HIV drug regimen, you will need to take pills 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 drugs for HIV, you should sit down and 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
HIV therapy has been shown to reduce the risk of transmitting HIV to uninfected sex partners. 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 partners.Deciding what drugs to take
Print out these questions to ask your doctor when you start to discuss particular drugs.
What kinds of drugs are available?
There are 6 main classes of anti-HIV drugs:
- Nucleoside Reverse Transcriptase Inhibitors (NRTIs or "nukes")
- Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs or "non-nukes")
- Protease Inhibitors (PIs)
- Integrase Inhibitors
- Chemokine Coreceptor Antagonists (CCR5 Antagonists)
- Fusion or Entry Inhibitors
The following is a short description of how each group of drugs works and the names of the individual drugs.
Note: The names of drugs are long and sometimes hard to pronounce. Don't worry! You can always come back and read this again, and you can talk to your VA doctor about questions you have.
Nucleoside Reverse Transcriptase Inhibitors (NRTIs or nukes)
NRTIs were the first type of drug available to treat HIV. They remain effective, powerful, and important medications for treating HIV when combined with other drugs. They are better known as nucleoside analogues 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.
The following is a list of the drugs in the NRTI class:
- Emtriva® (emtricitabine)
- Epivir® (3TC, lamivudine)
- Retrovir® (AZT, zidovudine)
- Videx-EC® (ddI, didanosine)
- Viread® (tenofovir)
- Zerit® (d4T, stavudine)
- Ziagen® (abacavir)
- Combivir® (Retrovir + Epivir)
- Epzicom® (Epivir + Ziagen)
- Trizivir® (Retrovir + Epivir + Ziagen)
- Truvada® (Viread + Emtriva)
Non-nucleoside Reverse Transcriptase Inhibitors (NNRTIs or non-nukes)
These drugs also prevent HIV from using reverse transcriptase to make copies of itself, but in a different way.
These NNRTIs are available:
- Edurant® (rilpivirine)
- Intelence® (etravirine)
- Rescriptor® (delavirdine)
- Sustiva® (efavirenz)
- Viramune® (nevirapine)
Protease Inhibitors (PIs)
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.
Nine PIs are available:
- Aptivus® (tipranavir)
- Crixivan® (indinavir)
- Invirase® (saquinavir)
- Kaletra® (lopinavir + ritonavir combined in one tablet)
- Lexiva® (fosamprenavir)
- Norvir® (ritonavir)
- Prezista®(darunavir)
- Reyataz® (atazanavir)
- Viracept® (nelfinavir)
Several combination tablets that include a "booster" plus a PI are:
- Evotaz® (Reyataz® + Tybost®)
- Prezcobix® (Prezista® + Tybost®)
- Kaletra® (lopinavir + Norvir®)
Integrase Inhibitors
- Isentress® (raltegravir)
- Tivicay® (dolutegravir)
- Vitekta® (elvitegravir)
(Note: Vitekta must be "boosted" with a pharmacokinetic enhancer, either Tybost® or Norvir®.)
Chemokine Coreceptor Antagonists (CCR5)
- Selzentry® (maraviroc)
Fusion or Entry Inhibitors
Only one fusion inhibitor is available at present, and it needs to be injected:
- Fuzeon® (enfuvirtide, T-20)
Multi-class drug combinations
- Atripla® (Sustiva + Emtriva + Viread)
- Complera® (Edurant + Emtriva + Viread)
- Stribild® (Vitekta + Tybost + Emtriva + Viread)
- Triumeq® (Tivicay + Epzicom + Ziagin)
Which drugs should you take?
Anti-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.
Anti-HIV medicines do different things to the virus--they attack it in different ways--so using the different drugs in combination 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 medications that works best for everyone. Each combination has its pluses and minuses.
When drugs are used together, the therapy is called combination therapy [or antiretroviral therapy (ART)].
Combination therapy
Print out these questions to ask your doctor if you are considering combination therapy.
Why must you stay on the treatment plan?
If you follow your provider's instructions about how to take your medicine, the anti-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, the level of the drug in your body goes up and down. When drug levels are low, the virus then has the opportunity to make copies of itself more rapidly. That increases your viral load.
Following your treatment schedule also helps to prevent drug resistance. If you miss a dose, the virus may make new and different types of itself that the drug can no longer combat.
It's challenging for some patients to stick to their HIV drug treatment plan. Most plans involve taking several pills every day, and some of the drugs have unpleasant side effects.
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
doctor's instructions for taking your medicine.
Questions to ask about each drug
- 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 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 doctor is called?
Tips for staying on your treatment plan
- 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.
Quick Tips: Adherence
- Get a pillbox and fill it at the beginning of each week.
- Take your medicine at the same time each day. (Use a watch with an alarm or get a beeper.)
- Get a medication "diary" or notebook. In it, you can write the names of your drugs, and then check off each dose as you take it. (See the "Resources" section for a sample diary.)
- Plan ahead for changes in your normal routine (for example, if you will be out all day, or if you're going on vacation).
- Make sure you always have enough medicine! Call your VA provider or pharmacist if you are running low.
Deciding whether to continue HIV therapy
What are drug interactions?
When one drug affects how another drug behaves, this is called a drug-drug interaction. For example, when taken together, some drugs become less effective or cause side effects.
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 anti-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 VA health care provider can give you a list of drugs and foods to avoid, depending on what kind of medicine you are taking. Ask for this information for each drug that you are taking.
Also, be sure that you tell your doctor about every single medication, drug, supplement, and herb you are taking--whether you got them by prescription or not.
What are side effects?
Almost all medicines may have side effects in some people. Some people take aspirin for a headache, but it gives them an upset stomach. The upset stomach is a side effect of the aspirin. Not all side effects are unpleasant, though. Even the side effects that make you feel sick aren't always bad. Some side effects mean that your medicine has started to work.
Your provider will try to prescribe anti-HIV medicines that fight the HIV virus in your body without causing unpleasant side effects.
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 VA 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 weeks or so.
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?
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?
Remember, just skipping doses without your doctor's instructions is dangerous, and you should never change your treatment plan without talking with your doctor.
Should you ever switch the drugs you're taking?
If you are following your drug therapy plan correctly (taking the right medicines in the right amount at the right time), but the treatment is not working well enough, your provider may consider switching your medicines.
Your provider also may want to change your medicine if you have side effects that are bothering you or if your lab tests show signs of ill effects of the HIV drugs (this is called drug toxicity).
Before changing medicines, you and your VA provider should talk about:
- All the anti-HIV drugs you have taken before and the ones you haven't taken
- Any drug resistance your HIV virus may have
- The strength of the new drugs that your provider recommends
- Side effects that may go along with the new medicines
- How well you will be able to follow the new drug treatment plan
What if the viral load is undetectable?
Having an undetectable viral load tells us that the anti-HIV medications are working. An undetectable viral load doesn't mean the HIV virus has been eradicated from your body, though. Even though the virus is undetectable in the blood, it is still hidden in other parts of your body, such as the brain, reproductive organs, and lymph nodes. 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?
Even if a virus is resistant to most or all available drugs (this is very rare), some people can still stay healthy by continuing to take a combination of drugs. Therefore, you should discuss the situation with your doctor rather than just stop taking your medications.
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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