Treatment Decisions for HIV: Entire Section
Treatment Decisions
HIV
is a virus that can multiply quickly in your body and damage your
immune system. Even though no cure exists for HIV infection or the later
stage of HIV disease known as AIDS, there are many different drugs that
can greatly slow down the damage done by the HIV virus and allow the
immune system to recover. Treatment allows people to live longer and
healthier lives, and helps prevent transmission of HIV to sex partners.
Most people who take medicine for their HIV infection can now expect to
live healthy lives for many years.
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
HIV
drugs are very important in keeping people healthy over the years. For
people who are sick from HIV, they can be lifesavers. Effective
treatment stops or slows the progression of HIV. In recent years,
scientists have learned a lot about the benefits of treatment even for
persons whose immune systems appear to be functioning relatively well.
Thus, in general, HIV drugs are recommended for ALL people with HIV
infection, whether they are sick or well.
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.
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 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
Once
you and your provider have decided that you should start taking drugs
for HIV, he or she will come up with a personal treatment plan for you.
You will 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 doctor when you start to discuss particular drugs.
What kinds of drugs are available?
Anti-HIV
drugs are also called antiretroviral drugs or antiretrovirals (ARVs).
They work because they attack the HIV virus directly. The drugs cripple
the ability of the virus to make copies of itself.
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
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.
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)
The
first group of antiretroviral drugs is the nucleoside reverse
transcriptase (pronounced "trans-krip-tase") inhibitors (NRTIs).
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)
Several of the NRTI drugs may be combined into one tablet to make
it easier to take your medications. These drugs are known as fixed-dose
combinations:
- Combivir® (Retrovir + Epivir)
- Epzicom® (Epivir + Ziagen)
- Trizivir® (Retrovir + Epivir + Ziagen)
- Truvada® (Viread + Emtriva)
Non-nucleoside Reverse Transcriptase Inhibitors (NNRTIs or non-nukes)
The
second type of antiretroviral drugs is the non-nucleoside reverse
transcriptase inhibitors (NNRTIs). These drugs are sometimes called
non-nucleosides 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)
The third group of drugs is the protease (pronounced "pro-tee-ase") 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)
Many PIs are recommended or approved for use only with another drug
that "boosts" their effect. One of these is low-dose Norvir
®, the other is a non-HIV drug called Tybost
® (cobicistat).
Several combination tablets that include a "booster" plus a PI are:
- Evotaz® (Reyataz® + Tybost®)
- Prezcobix® (Prezista® + Tybost®)
- Kaletra® (lopinavir + Norvir®)
Integrase Inhibitors
This
class of anti-HIV drugs works by blocking an enzyme (HIV integrase)
that the virus needs in order to splice copies of itself into human DNA.
- Isentress® (raltegravir)
- Tivicay® (dolutegravir)
- Vitekta® (elvitegravir)
(Note: Vitekta must be "boosted" with a pharmacokinetic enhancer, either Tybost® or Norvir®.)
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.
Fusion or Entry Inhibitors
The fusion or entry inhibitors work by stopping the HIV virus from getting into your body's healthy cells in the first place.
Only one fusion inhibitor is available at present, and it needs to be injected:
- Fuzeon® (enfuvirtide, T-20)
Multi-class drug combinations
At
present there are four options that combine drugs from two different
groups into a complete HIV drug regimen. A patient prescribed one of
these combinations takes only one tablet, once a day. Despite the
convenience, these combination tablets are not for everyone--each has
specific possible side effects or dosing requirements that should be
considered. You and your doctor can decide whether these drug
combinations are right for you.
- Atripla® (Sustiva + Emtriva + Viread)
- Complera® (Edurant + Emtriva + Viread)
- Stribild® (Vitekta + Tybost + Emtriva + Viread)
- Triumeq® (Tivicay + Epzicom + Ziagin)
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 VA health
care provider will know which medicines you should 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
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 doctor if you are considering combination therapy.
Why must you stay on the treatment plan?
"Adherence"
refers to how well you stay on your treatment plan--whether you take
your medications exactly as your VA health care provider tells you.
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
One
of the most important things you can do to make sure you take your
medicine correctly is to talk with your doctor about your lifestyle,
such as your sleeping and eating schedule. If your doctor 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 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?
During
every visit to your doctor, you should talk about whether you are
having trouble staying on your treatment plan. Studies show that
patients 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.
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.
It
is important that you tell your provider right away about any problems
you are having with your treatment plan. Keeping a medication diary can
help you remember any problems you have.
Deciding whether to continue HIV therapy
Now
that you've gone over some of the things you should think about before
starting HIV drug therapy, let's look at some of the 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
anti-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, 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?
Medicines
can cause changes (or effects) in the body. Some effects, like making
you feel better, are the ones that you want and expect to happen. Other
effects are ones that you don't want or don't expect. The effects that
you don't want or expect are called 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?
After
you've started taking medicine for your HIV, your health care 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 medicines 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 "undetectable" levels, and to keep it there.
"Undetectable" means the viral load is too low to measure using standard
laboratory tests.
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?
In
general, taking a "drug holiday" from your anti-HIV medicine for
reasons other than a severe reaction to medications may be harmful to
your health. Having said that, your doctor may suggest that you
temporarily stop your antiretroviral drugs for certain specific reasons.
Be sure to talk with your VA health care provider about this issue if
you have questions about it. How you stop taking your anti-HIV drugs
safely can be a complicated process.
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?
You
should never change the drug plan you're on without talking with your
health care provider. This is a very important decision and one that
must be made with your VA health care provider.
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
Always be sure to talk with your provider about any changes in your drug treatment.
What if the viral load is undetectable?
If your HIV viral load becomes undetectable (doesn't show up on tests), can you stop treatment?
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?
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. Sometimes, your provider can 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.
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.
Resources
Tips and Tools
Questions to Ask Your Doctor
Web Resources