Women & HIV/AIDS

Treatment

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• You Have Options
• Medicine Will Slow Down the Disease
• 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
• Complementary and Alternative Medicine Therapy
• Additional Resources

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 and higher quality lives. 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 and get the most from these treatments.

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 one, call your state AIDS hotline or 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.

Just because you are a HIV-positive doesn’t mean that you will need HIV treatment right now. You and your doctor will decide the best time to start treatment. When to start depends on your overall health, the amount of HIV in your blood, how well your immune system is working, and your readiness to stick to treatment. Keep in mind: It is important to see your doctor often — even before you start treatment — to keep you as healthy as possible.

Medicine Will Slow Down the Disease

At some point, you will need medicine to slow down the disease and help keep you healthy. Many medicines are used to treat HIV/AIDS. They fall into six classes:

• Nucleoside/Nucleotide Reverse Transcriptase Inhibitors (NRTIs) (also called "nukes") — Drugs in this class prevent HIV from making copies of itself.
• Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs) (also called "non-nukes") — Drugs in this class prevent HIV from making copies of itself.
• Protease Inhibitors (PIs) — Drugs in this class block a protein that HIV makes, which also stops HIV from making copies of itself and infecting healthy cells.
• Entry Inhibitors — Drugs in this class work outside of the cell to keep HIV from getting into and infecting healthy cells.
• Fusion Inhibitors — Drugs in this class work outside of the cell to keep HIV from getting into and infecting healthy cells.
• Integrase Inhibitors — Drugs in this class work inside of the cell to keep HIV, which is already inside a cell, from getting started growing.

Because each HIV drug can't work by itself, patients must take a combination of three or more drugs from different classes. 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.

There is no single “best” treatment plan. Your doctor will help you decide which combination of medicines is right for you. 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". Talk to your doctor if you are unsure which drugs are part of your treatment.

Many medications and other 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 or planning to become pregnant to figure out the best treatment for you and your baby.

When to Start Treatment

Regular checkups will help your doctor monitor your health. Your checkups will likely include a physical exam and lab tests, such as a CD4 count, viral load test, and may also include a test to see if your HIV strain is resistant to any HIV drugs. This information will help your doctor recommend a time to start treatment and come up with a treatment plan. Generally, you should start treatment if:

• You have severe symptoms of HIV infection or have been diagnosed with AIDS.
• Your CD4 count is 350 cells/mm3 or less. Your CD4 count is a measure of your immune system’s strength. Treatment should be started before 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 are pregnant. For treatment guidelines for pregnant women with HIV, see the Pregnancy section.
• You have HIV-related kidney disease.
• You are being treated for hepatitis B.

Once you begin treatment, you may need to continue taking HIV medicines for the rest of your life. So other factors you will need to consider before starting treatment include:

• 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 a few pills a day, you must be ready to commit to taking all your medicines as directed and stick with it.
• Managing side effects. You will likely 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. Be sure to tell your doctor about any side effects you are having. Many side effects can be managed. (See HIV/AIDS Drugs Cause Side Effects.)

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 bothersome, but go away with time. Others are ongoing, and hard to cope with. Some are serious — and even life-threatening. Some side effects you might have include:

• Nausea
• Vomiting
• Diarrhea
• Weakness
• Dizziness
• Headache
• Rash
• Fever

Other side effects you should be aware of include:

• Liver damage — Many HIV drugs can hurt the liver. These problems can be worse if you have other risk factor for liver disease, such as hepatitis B or C or alcohol use. Your liver can stop working if it is damaged too much. Ask your doctor whether you need to be checked for liver disease before starting treatment. Knowing the health of your liver can help your doctor decide which treatment plan is best for you.
• High blood sugar — Treatment with PIs can cause your blood sugar levels to be too high. This is also called hyperglycemia (heye-pur-gleye-SEE-mee-uh). You also have a higher chance of getting diabetes or insulin resistance (IR) if you have high blood sugar or if you have other risk factors for diabetes. This can lead to serious, even life-threatening health problems and serious damage to many parts of the body. People who take PIs may have signs of high blood sugar within weeks to months after starting therapy. These include being very thirsty, needing to pass urine often, and losing weight for no reason. Some researchers suggest that problems with blood sugar levels may in fact be due to body fat changes, which also can result from these drugs. Talk with your doctor about how often you need a blood sugar test and how to prevent and control IR and diabetes.
• High blood fat (lipid) levels — Treatment with some PIs and other drugs can cause blood fat levels to increase. This is also called hyperlipidemia (heye-pur-lip-uh-DEE-mee-uh). Cholesterol and triglycerides are types of blood lipids. An unhealthy lifestyle and other risks factors also can cause blood lipid levels to go up. High levels can lead to heart disease and inflammation of your pancreas. Your doctor can do a blood fat test to see if your levels are too high. The good news is that you can take steps to prevent or control this problem. Lifestyle changes and medicines can help.
• Body fat changes — Many HIV drugs are associated with problems in the way your body makes, uses, and stores fat. This also is lipodystrophy (lip-oh-DISS-truh-fee). It causes you to lose fat in some parts of your body, such as the arms, legs, face, and bottom, and build up fat in other parts, such as belly, breasts, and back of the neck. Body fat changes along with high blood fat levels and insulin resistance is called lipodystrophy syndrome. These problems often occur together. Changes in the way you look can be hard to cope with, especially if you’re not feeling your best. Talk to your doctor about ways to treat body fat changes. Exercise and changes to your diet might help build muscle and reduce fat buildup. Changing your HIV drugs, medicines to treat high blood sugar, and other methods might help too.
• Decrease in bone density and bone loss — People who take PIs may be at greater risk for these problems. Being a woman also puts you at greater risk, as do other factors such as smoking, being overweight, and not exercising. Body fat changes and high blood fat levels that result from HIV drugs might also increase your risk of bone problems. Unfortunately, a broken bone (fracture) is often the first sign of these bone problems. Talk to your doctor about your risk factors for bone problems and whether you should have a test to measure your bone density. Learn more about preventing bone problems such as thorough physical activity and eating foods that are good for bone health.
• High levels of lactate in the blood — NRTIs can disrupt the body’s cell function, causing too much lactate (a chemical) to be made. Normally, the liver breaks lactate down. But NRTIs also can hurt the liver, so the liver has a hard time breaking down the lactate. Very high lactate levels can lead to lactic acidosis, a rare but life-threatening condition. Symptoms include nausea, vomiting, and stomach pain that don’t stop; fatigue for no reason; shortness of breath; cold or blue hands and feet; and weight loss. Women and people who are overweight are at greater risk. If you are taking HIV drugs and start to have these symptoms, call your doctor right away.
• Nerve problems — Some HIV drugs can cause damage to the nerves in your hands and feet. This is called neuropathy. Symptoms include burning or pain and numbness. Tell your doctor if you have these symptoms so you can discuss whether changing your treatment might ease this side effect.

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 doses can lead to drug resistance. This is when the virus is able to “ignore” the medications, and so the medicines do not work as well at 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 at specific times such as the weekend. Practicing your treatment regimen ahead of time using jelly beans can help you figure out which doses are hard to remember. 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 with food 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. Side effects that may seem minor could mean there are serious problems. 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. Don’t isolate yourself. Reach out to those you love and who can help you stick to your treatment and not forget. 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 prevention strategies, such as using condoms and not sharing 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 make you get sicker and have 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.

Complementary and Alternative Medicine Therapy

Many people with HIV or AIDS may think about trying complementary and alternative medicine (CAM) therapy to boost their immune system, treat complications of the disease, or ease side effects from HIV drugs. Some examples of some CAM therapies are:

• Acupuncture
• Plant products, such as herbal supplements
• Massage
• Aromatherapy
• Meditation

Never try any CAM therapy without talking to your doctor first. Some CAM therapies may not work, carry risks, or even be harmful. For example, the widely used herbal products St. John’s wort and garlic supplements can interfere with some HIV medicines. St. John’s wort is used to boost mood. Garlic supplements are used to lower cholesterol, which has made it popular with HIV patients whose cholesterol levels have risen due to a side effect of HIV drugs. On the other hand, in addition to your current HIV treatment, some CAM therapies, such as meditation, might help to improve your sense of well-being and quality of life. Your doctor should know whether a CAM therapy may be helpful and is safe to try along with your current treatment.

Treatment was reviewed by:

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

Additional Resources:

Publications

1.     Approved Medications to Treat HIV Infection — This list, current as of December 2008, includes medications approved by the Food and Drug Administration (FDA) to treat HIV infection.

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

2.   Drugs Used in the Treatment of HIV Infection — This publication lists antiretroviral drugs by brand name and provides their generic name, manufacturer, and FDA approval date.

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

3.   Drugs Used in the Treatment of Pediatric HIV Infection — This publication lists antiretroviral drugs by brand name and provides their generic name, manufacturer, and FDA approval date for use in children infected with HIV.

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

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

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

5.   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 provides 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=...

6.     HIV and Its Treatment: What You Should Know — This publication provides information about HIV treatment regimens for people recently diagnosed with HIV. It discusses when to start treatment, the importance of adhering to treatment regimens, and what to do if regimens fail. Treatment during pregnancy is also discussed, as well as what to expect during treatment.

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

7.     Hyperglycemia — This fact sheet explains what hyperglycemia is, how it affects someone with HIV/AIDS, and how it can be treated.

   http://www.aidsinfo.nih.gov/ContentFiles/Hyperglycemia_FS_en.pdf

8.     Hyperlipidemia — This fact sheet discusses what hyperlipidemia is, the signs and symptoms of hyperlipidemia, as well as how it could affect HIV treatment regimens.

   http://www.aidsinfo.nih.gov/contentfiles/Hyperlipidemia_FS_en.pdf

9.     Lipodystrophy — This fact sheet explains what lipodystrophy is, how it affects someone with HIV/AIDS, what causes it, and how it is treated.

   http://www.aidsinfo.nih.gov/contentfiles/Lipodystrophy_FS_en.pdf

10.   Treatment of HIV Infection — This fact sheet gives an overview of the drugs that have been developed and approved for treating 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

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

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

12. Alternative and Complementary Therapies (Copyright © AIDSInfoNet) — This publication explains what complementary and alternative therapies are and how they are used in treating patients with HIV/AIDS. This publication also suggests that people talk to their doctors before trying complementary and/or alternative therapies.

    http://www.aidsinfonet.org/fact_sheets/view/700?lang=eng

13. 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

14. Bone Health and HIV Disease (Copyright © Project Inform) — This publication discusses how bone loss affects people who are HIV-positive. This publication also describes the three common types of bone loss: osteopenia, osteoporosis and osteonecrosis.

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

15. Caring for Your Liver (Copyright © The Well Project) — This publication discusses the functions of the liver in the body and why it’s important for people with HIV to monitor the health of their liver. It provides information on ways people with HIV can take better care of themselves to preserve liver function.

    http://www.thewellproject.org/en_US/Diseases_and_Conditions/Other_Diseases_and_Conditions/Caring_for_your_L...

16. 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, nerve problems, menstrual problems, and hair loss.

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

17. Herbs, Supplements, and HIV (Copyright © Project Inform) — This publication can help people with HIV make informed decisions when considering using herbal supplements and similar complementary therapies.

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

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

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

19. Side Effects (Copyright © AIDS InfoNet) — This publication describes some of the most common side effects of HIV medicines and tips for dealing with side effects.

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

20. Strategies for HIV Therapy (Copyright © Project Inform) — This publication can help you make sense of treatment issues, including when to start and what treatments to use. It includes basic information on drug resistance testing and special treatment considerations for women.

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

21. Treatment After Exposure to HIV (Copyright © AIDSInfoNet) — This publication discusses how treatment can be administered to people who have recently been exposed to HIV so they do not become infected. This publication also discusses the possible side effects of the treatment.

    http://www.aidsinfonet.org/fact_sheets/view/156?lang=eng

22. Treatment Information for Women and Their Providers (Copyright © Project Inform) — This web site links to information from Project Inform specifically for women with HIV/AIDS. This web site also provides information on HIV treatment and how to incorporate treatment into everyday life.

    http://www.projectinform.org/info/index_w.shtml

Organizations

1.   AIDS.gov
2.   AIDSinfo
3.   Centers for Disease Control and Prevention, HHS
4.   Division of Acquired Immunodeficiency Syndrome (DAIDS), NIAID, NIH, HHS
5.   National Center for Complementary and Alternative Medicine
6.   National Prevention Information Network, CDC, HHS
7.   Office of Special Health Issues, FDA, OPHS, HHS
8. AIDS InfoNet
9. AIDS.ORG
10. Women Alive

= Indicates Federal Resources

Content last updated March 4, 2009.