Treatment

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• You Have Options
• Treatment Will Slow Down the Disease
• Information from the Food and Drug Administration (FDA)
• When to Start Treatment
• HIV/AIDS Drugs Cause Side Effects
• Stick to Your Treatment
• How to Know if Treatment is Working
• Taking a Drug Holiday
• Additional Information on Treatment

HIV medicines are giving women longer, healthier futures and new strength. While there's no cure for HIV, the treatments today allow women to live longer. Making sense of all your treatment options can be hard. By getting the facts, you can decide the best way for you to manage your illness.

You Have Options

If you test positive for HIV, find a doctor you can trust who treats HIV positive women. If you need help finding a one, call the CDC National AIDS hotline at 800-CDC-INFO (232-4636). This hotline will either point you to a specific doctor or to resources in your area where you can get health care, like a clinic. Your doctor will talk to you about your health. You also will get a physical exam. If you found out about your positive result over the phone from a counselor at a mail-in testing company, follow up with a doctor to talk about your result.

You will have tests to figure out if and when you should start treatment. Some tests may include:

• blood count
• blood chemistry profile (including testing for your kidney and liver)
• hepatitis B test
• hepatitis C test
• viral load test (amount of HIV in your blood)
• CD4 cell count (number of cells in your blood that fight infection, also called "T cells")
• syphilis test
• TB skin test
• toxoplasma antibody test
• gynecologic exam (with Pap test and pregnancy test)

Treatment Will Slow Down the Disease

There is no cure for HIV/AIDS. But there are medicines that slow down the disease. The FDA has approved a number of drugs for treating HIV. Because each HIV drug can't work by itself, patients must take a combination of three or more drugs. When this combination of drugs is taken, it's called "highly active antiretroviral therapy" or HAART. Sometimes, it is also called a "cocktail" or "cocktail therapy." When taken properly, HAART treatment helps people with HIV live longer and have fewer infections or other problems related to their HIV. The drugs work by lowering the amount of HIV in the blood and improving your body’s ability to fight infections.

Many medications and other drugs and substances can interact with HIV medicines. These interactions can hurt you or make the HIV medicines weaker. So you should tell your doctor if you are using any other prescribed medications. Also, tell your doctor if you are using any recreational drugs, alcohol, herbal remedies, or over-the-counter medicines. Make sure to tell your doctor if you are taking birth control pills. Some HIV drugs can make the birth control pill not work as well. Also, tell your doctor if you are pregnant to figure out the best treatment for you and your baby.

There are four classes of drugs used to treat HIV. The names of HIV drugs can be confusing. Many HIV drugs have both a brand name and a generic name. Some also go by a shortened name. For example, Retrovir® is the brand name of zidovudine (the generic name), and also goes by "AZT" or "ZDV". Also some drugs now are combined into a single pill. For example, Combivir® includes both lamivudine and zidovudine in a single pill. Your doctor will help you decide which medicines should be included in your treatment.

The four classes, along with the drugs that have been FDA approved as of March 2007, are:

Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs) (also called "nukes") prevent HIV from making copies of itself. Usually, you take two drugs from this class as part of your HAART. These can be combined in one pill or taken separately.

Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs) (also called "non-nukes") prevent HIV from making copies of itself. You usually take one from this class or one or two from the protease inhibitor class.

Protease Inhibitors (PIs) block a protein that HIV makes to stop HIV from making copies of itself and infecting healthy cells. You usually take one or two from this class or one from the NNRTIs class.

Fusion Inhibitors work outside of the cell to keep HIV from infecting healthy CD4 cells.

Multi-class Combination Products combine drugs from more than one class into a single product.

For treatment guidelines for pregnant women with HIV, see the AIDS and Pregnancy section.

When to Start Treatment

Talk to your doctor about when to start treatment. The time to start treatment is different for everyone because there are many factors to consider, such as:

• Damage to the immune system. When to start treatment depends largely on your CD4 cell count, which is a measure of your immune system’s strength. CD4 cells are a type of white blood cell that fights infection. With HIV, your CD4 cells are destroyed, causing your immune system to weaken. Treatment should be started before HIV has done too much damage to your immune system.
• Readiness to stick with treatment. You will need to take all of the drugs exactly how your doctor tells you to, without missing any doses. Missing doses can result in the virus becoming resistant to the medications. Once this happens, the drugs will not work as well or at all. Since one drug isn't strong enough to fight HIV alone, you will have to take several drugs every day. Whether you must take multiple pills or just one or two pills a day, you must be ready to commit to taking all your medicines as directed and stick with it.
• Managing side effects. There is a good chance that you will have some side effects from the drugs. Some of these are tougher to live with than others. And some go away over time, while others will stay. Some side effects are more common and more severe in the first few months of treatment. You must be ready and willing to put up with side effects before you begin treatment. You should make sure to tell your doctor about any side effects you are having so they can help you manage them. (See HIV/AIDS Drugs Cause Side Effects.)
• Treatment options. There is more than one way to approach HIV treatment. When you begin treatment and what medicines you will use will depend on the approach you and your doctor agree upon. It is important to start treatment before the HIV has done too much damage to your immune system. But starting very early (based on your CD4 count) if you are not sick is not currently advised. You should talk with your doctor about when is the best time to start. It is important to see your doctor often—even before you start HAART—to keep you as healthy as possible.

There are still a number of things about treatment of HIV that we do not know. This is particularly true for women. Research and clinical trials of what medicines to use and when to start are seeking to answer those questions.

When you begin to discuss treatment options with your doctor, ask about clinical trials. Your doctor can tell you if there are any that would be open to you and how to enroll if you want to participate.

HIV/AIDS Drugs Cause Side Effects

Despite the beneficial effects of HAART, you can get side effects from the drugs. Some are serious. Others are bothersome, but go away with time. These are some side effects:

• nausea
• vomiting
• diarrhea
• weakness
• dizziness
• headache
• rash
• fever
• liver problems
• diabetes
• losing fat in some parts of your body and getting it in other parts (face, legs, arms, buttocks, breasts, neck, stomach)
• high cholesterol
• more bleeding in patients with hemophilia
• decrease in bone density

HIV treatment can be hard because of side effects. Before you start taking HIV drugs, talk to your doctor about side effects you may have, ways to feel better, if/when they will go away, and how long they'll last. Even though you have side effects from the drugs, it's important to take your medicines exactly how and when you're told to and to let your doctor know about your symptoms.

Stick to Your Treatment

HIV drugs can be hard to take. You may need to take a lot of them, and they can cause side effects that are hard to manage. But it's so important that you take all of them as your doctor tells you to. Missing medications can result in the development of drug resistance. This is when the virus is able to “ignore” the medications, and so the medicines do not work as well in fighting the virus or at all. Even people who take their medicines most of the time, but not all of the time, face a high risk of drug resistance. When resistance develops, you will need to change to a new set of medications. The chance of success with your new HAART will not be as high as with the first HAART. You also might get new side effects that you must get used to. Here are some ways to stick to your treatment:

• Know your options and what to expect. Talk to your doctor about all treatment options and drug side effects.
• Think about why you might have a hard time with treatment. For example, it might be hard to take all the drugs when you're supposed to take them or specific times such as the weekend. Talk to your doctor about these problems and how you can make your treatment plan fit your lifestyle. For instance, it is helpful to take them with something you do every day, such as when you get out of bed in the morning.
• Plan your meals. Some drugs have to be taken with food or with no food. If this is true with any of your medicines, plan when you'll eat so you take the right drugs with the right amount and type of food.
• Write down information about the medicines. This includes drug name, when to take it, how much to take, and if you take it when you're eating or on an empty stomach. Use this planner to organize your medicines. Don't leave your doctor's office until you understand how to take your drugs.
• Organize your medicines. Use daily or weekly pill boxes or other organizers (you can even use egg cartons!).
• Don't forget! Use timers, alarm clocks, or pagers to remind you to take your medicines. You could even write it in your planner. Some people use family and friends to help them remember.
• Plan ahead. Weekends and holidays make it harder to remember to take your medicines. Come up with a plan ahead of time so you won't forget. If you're traveling, keep medicines with you, just in case your checked luggage is lost. Some people keep an extra dose of medications with them or at work in case they are away from their medications when they are supposed to take them.
• Get refills on time. Don’t wait until the last minute! Don't miss a dose!
• Write down the problems you have with the drugs. It will help you remember and track your problems.
• Tell your doctor right away if you have side effects or other problems. Don't wait. Work with your doctor to make your treatment plan work for you—you might be able to change your treatment so it's better for you.
• Talk to people who can help you cope. This process is no easy task. Talk to people who can help you get through this. It is important not to isolate yourself—reach out to those you love. Think about joining a support group to talk to other people with HIV.

How to Know if Treatment is Working

There are ways to know if your treatment is working. Your doctor will consider these factors:

• viral load (amount of HIV in your blood)—the lower, the better. The goal is for HIV to be “undetectable” in your blood. Undetectable does not mean it is gone, but it is so low that current lab tests cannot find it.
• CD4 cell count (number of cells in your blood that fight infection)—the higher your count, the better able you are to fight your HIV and other infections.
• recent health history (if you are feeling healthy and not getting infections)
• results from physical exams

Even if the treatment is working and the amount of HIV in your blood is so low that that the tests can't find it, you still have HIV or AIDS. You can still give HIV to other people. Keep using condoms, and don't share drug needles. And remember, the HIV will start to increase in your blood again if you stop taking your medicines.

Taking a Drug Holiday

If you take medicines for HIV/AIDS, you may feel like the drugs are running your life. It's tough to take all of the medicines when you're supposed to, some with food, some not. The medicines' side effects can make you long for a break from treatment. Researchers have found that it is not a good idea to stop treatment once started. Stopping can result in you getting sicker and having more side effects from the medications.

The National Institute of Allergy and Infectious Diseases (NIAID) conducted a study of people who had drug-resistant HIV (a type of HIV that does not get better with medicines) and detectable virus in their blood to find out if breaks in their treatments would help them. Unfortunately, it didn't work for this group. Strategy for Management of Antiretroviral Therapy (SMART) is another government-funded study that looked into the possible role of drug holidays in HIV treatment. This study found that even in patients who had not been on HIV medications before, taking planned holidays from drugs was dangerous and resulted in higher risks of getting sick or dying and having more problems with medications. At this time, planned drug holidays are not advised as part of routine care.

Treatment was reviewed by:

Lisa Hirschhorn, MD, MPH
Senior Clinical Consultant HIV/AIDS
JSI Research and Training

Additional Information on Treatment:

Publications

1.   Drugs Used in the Treatment of HIV Infection - This publication lists anti-retroviral drugs by brand name and provides their generic name, manufacturer, and FDA approval date.

   http://www.fda.gov/oashi/aids/virals.html

2.   Drugs Used to Treat Complications of HIV/AIDS - This publication lists the brand names, generic names, uses, manufacturers and approval dates for various drugs employed to treat complications of HIV/AIDS.

   http://www.fda.gov/oashi/aids/stat_app.html

3.   Guidelines for the Use of Antiretroviral Agents in HIV-1 Infected Adults and Adolescents - This report from the U.S. Department of Health and Human Services gives the treatment guidelines for adult and adolescent HIV patients. It includes information on when to start antiretroviral treatment, what medications to start with, what medications not to use, and how to manage treatment.

   http://aidsinfo.nih.gov/Guidelines/GuidelineDetail.aspx?MenuItem=Guidelines&Search=Off&GuidelineID=...

4.     HIV and Its Treatment: What You Should Know - This publication provides basic information for people recently diagnosed with HIV and also gives information on when to start treatment. Treatment during pregnancy is also discussed as well as what to expect during treatment.

   http://aidsinfo.nih.gov/contentfiles/HIVandItsTreatment_cbrochure_en.pdf

5.   Treatment of HIV Infection - This fact sheet gives an overview of the drugs that have been developed and approved for treating individuals with HIV. It also briefly covers the side effects of these drugs and what research is being done in the field.

   http://www.niaid.nih.gov/factsheets/treat-hiv.htm

6. AIDSinfo Drug Database - The AIDSinfo Drug Database provides fact sheets on approved and investigational HIV/AIDS related drugs that describe the drug's use, pharmacology, side effects, and other information.

   http://aidsinfo.nih.gov/DrugsNew/Default.aspx?MenuItem=Drugs

7. Anti-HIV Therapy Strategies (Copyright © Project Inform) - This publication reviews the new anti-HIV drugs currently, or soon to be, in studies. It also explains how the drug is different or similar to those already used in the treatment of HIV.

   http://www.projectinform.org/info/avs/index.shtml

8. Dealing with Drug Side Effects (Copyright © Project Inform) - This publication gives information on how to cope with the side effects of anti-HIV drugs. Its topics cover fatigue, anemia, headache, nausea and vomiting, diarrhea, weight loss, dry mouth, rash, peripheral neuropathy, period problems, and hair loss.

   http://www.projectinform.org/info/sideeffects/index.shtml

9. Herbs, Supplements, and HIV (Copyright © Project Inform) - This publication discusses some of the complications of using herbal supplements to manage HIV therapy side effects.

   http://www.projectinform.org/info/herbs/index.shtml

10. Making Decisions about Therapies (Copyright © Project Inform) - This publication gives information on what to consider before starting HIV therapy. It discusses how to choose a doctor, why you should learn about all the diffferent treatment options, and when to start therapy.

    http://www.projectinform.org/info/decisions/index.shtml

11. Side Effects (Copyright © AIDS InfoNet) - This publication describes some of the most common side effects that patients receiving HIV drugs experience. It provides tips for how to deal with the side effects.

    http://www.aidsinfonet.org/fact_sheets/view/550

12. Strategies for When to Start Anti-HIV Therapy (Copyright © Project Inform) - This publication reviews what you should consider before starting HIV therapy. It includes basic information on drug resistance testing and the different therapy options.

    http://www.projectinform.org/info/start/index.shtml

Organizations

1.   AIDSInfo
2.   CDC National Prevention Information Network
3.   Division of Acquired Immunodeficiency Syndrome(DAIDS), NIAID, NIH, HHS
4.   Office of Special Health Issues, FDA, OPHS, HHS
5. AIDS InfoNet
6. AIDS.ORG, Inc.
7. San Francisco AIDS Foundation
8. Women Alive
9. Women Organized to Respond to Life-threatening Diseases (WORLD)

= Indicates Federal Resources

Content last updated January 25, 2008.