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After You Start Therapy
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What are drug interactions?
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What are side effects?
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How do you deal with side effects?
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How do you know whether the drugs are working?
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Should you ever take a 'holiday' from the drugs?
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What if your pharmacy has trouble getting your HIV medicines and you run out?
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Should you ever switch the drugs you're taking?
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What if your viral load is undetectable?
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What if your treatment isn't working?
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What are clinical trials?
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Who can join a clinical trial?
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Before you start a trial
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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 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 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, 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 doctor 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 doctor 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 doctor immediately.

More information is available in the Side Effects Guide.

How do you know whether the drugs are working?

After you've started taking medicine for your HIV, your doctor 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 doctor can see if the drugs are working are:

transparent gifgrey bulletYour CD4 count. This number should stay the same or go up if your drugs are working.
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transparent gifgrey bulletYour health checkups. Your treatment should help keep you healthy and help you fight off infections and diseases.
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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 certain specific reasons. Be sure to talk with your 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.

What if your pharmacy has trouble getting your HIV medicines and you run out?

Always let your provider know if you are having trouble getting medicine from your pharmacy. Sometimes your provider can call and help fix the problem so that you don't have to go without your medicines. You also can ask your pharmacist to call your provider's office and request the refill.

Should you ever switch the drugs you're taking?

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

Your doctor 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 doctor should talk about:

transparent gifgrey bulletAll the anti-HIV drugs you have taken before and the ones you haven't taken
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transparent gifgrey bulletAny drug resistance your HIV virus may have
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transparent gifgrey bulletThe strength of the new drugs that your doctor recommends
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transparent gifgrey bulletSide effects that may go along with the new medicines
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transparent gifgrey bulletHow well you will be able to follow the new drug treatment plan
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Always be sure to talk with your doctor about any changes in your drug treatment.

What if your 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).

What are clinical trials?

A clinical trial is a research study that tests a new medicine to see if it is safe and works well. When a new medicine (or drug) is first developed, you cannot get it by prescription. Researchers must first test it in a laboratory with animals. Then, they must do a clinical trial in a hospital or clinic to test it in people. They test it to see if it is safe and to see how much of the medicine (or what dose) is enough to work.

The Food and Drug Administration (FDA) is a government agency that decides if a new drug is safe enough to give to patients by prescription. It looks at the results of the clinical trials to make this decision. Testing drugs for HIV is very important, and clinical trials are a way to find new and better medicines. All medicines that you can now get to treat HIV were first tested in clinical trials.

Clinical trials follow a set of rules called a protocol. The protocol says who can participate, how long the study is, and which tests need to be done.

Clinical trials are managed by doctors and are usually run by nurses or other health care professionals. The clinical trial staff will follow your progress closely and can help tell your regular doctor what is happening with your treatment.

Trials are also checked by an institutional review board (IRB). This is a group of people who reviews the clinical trial regularly to protect your rights, safety, and well-being.

When you are in a clinical trial, you may need to see the doctor more often and sometimes stay overnight in the hospital. This is because they want to check the effects of the medicine carefully. Because clinical trials are research, they will often test the real drug against a placebo (or sugar pill). You may not know if you are taking the medicine or the placebo until the clinical trial is over.

Who can join a clinical trial?

There are many types of clinical trials. For example, some trials are for people who have never been on anti-HIV medicines, others are for people whose treatment isn't working and who need a new medication. Not everyone can join a trial, though. Most clinical trials have eligibility criteria. These are rules about who can participate, based on health, age, and maybe other things. For example, some trials take only people who have a particular viral load or CD4 count. Usually, you can't participate in a clinical trial if you have any conditions are using medicines that might make it hard to measure how well the test treatment is working. You also cannot participate if the test treatment might harm you.

If you do qualify for a trial and decide to participate, you should be willing to follow the guidelines of the study.

Trials are done at hospitals and clinics around the world. You can look for open trials that are studying HIV medications or treatment of HIV-related problems on www.clinicaltrials.gov and talk to your provider about local clinical trials that may be appropriate for you.

Before you start a trial

Before you start a clinical trial, you should think about the good and bad things that may happen. Here are some good things about joining a trial:

transparent gifgrey bulletYou may get frequent, cost-free checkups from experts in HIV treatment, and receive support and education from research staff.
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transparent gifgrey bulletYou may get free medicine or other treatments.
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transparent gifgrey bulletYou may get new medicines that are not available from your regular doctor and that may work better than the old medicines.
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transparent gifgrey bulletYou may help medical researchers to find better treatments for all patients with HIV and therefore help people with HIV receive better care in the future.
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transparent gifgrey bulletYou may be paid or receive other incentives (such as gift cards) for your participation.
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Here are some risks associated with participation in a trial:

transparent gifgrey bulletYou may have side effects from the test medicine that you did not expect or that were not previously known.
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transparent gifgrey bulletDepending on the study design, you may not get the experimental medicine you wanted, and you may have your treatment chosen for you rather than making that decision yourself.
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transparent gifgrey bulletYou may not know what you are taking during the time you are involved in the study. This is called a "blinded study." In most blinded studies, participants are allowed to know what they are taking if a serious medical problem arises, or they are told the end of the study, but otherwise that information usually is not available during the study period.
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transparent gifgrey bulletYou may be required to make clinic visits, have blood tests, and undergo other medical examinations.
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transparent gifgrey bulletYour health may not improve as a result of the treatment, and it could become worse.
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Here are some of the questions you and your provider should think about:

transparent gifgrey bulletWhy are they doing the study in the first place?
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transparent gifgrey bulletWhat is the exact study design? How is it determined what treatment I will receive? Is it possible that I won't get active medicine or that I will get medicines that are blinded, meaning that no one but the study designers will know what I am taking?
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transparent gifgrey bulletHow long will it last, and where is it taking place? What kind of time commitment is required for me to participate?
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transparent gifgrey bulletWhat will I have to pay for?
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transparent gifgrey bulletWill I be able to continue taking the test drug after the trial is over? Who will pay for it?
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transparent gifgrey bulletWill I have to stop any drugs or other treatments I am now using?
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transparent gifgrey bulletWhat are the risks and benefits of participating?
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transparent gifgrey bulletIs this a good fit for me, given my specific health issues and medical history?
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As with other issues, your provider can help you make this decision.

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