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Managing your treatment of HIV/AIDS
Once you start taking medicine for HIV/AIDS, you will have to take medicine for the rest of your life. You will always need to take medicine on time so that it works. Here are some tips for deciding when to start treatment and how to stick with it when you do:
- 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 the 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 (PDF, 156 KB) 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.
- 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. Others use smartphone applications (apps).
- Take advantage of technology. Examples of smartphone apps include an HIV glossary from AIDSInfo; texting reminders from Med Action Plan, Truvada, and others (see blog.aids.gov for more info); and even state health departments. Your doctor may even use new technology to keep tabs on your treatment or to communicate with you. Ask your doctor for suggestions.
- 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.
- Get a treatment buddy. Some people find that having someone to help them remember to take their HIV drugs is important, especially early on in treatment. If you don't know anyone you can ask, your doctor or counselor may be able to help you find someone.
- 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. Think about joining a support group to talk to other people with HIV.
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There are ways to know if your treatment is working. Your doctor will look at these things:
- Viral load. Your viral load is the amount of HIV in your blood. HIV medication lowers your viral load. 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. Your CD4 count is the number of cells in your blood that fight infection. When the amount of HIV in your blood is lowered by medication, it allows the CD4 cells to reproduce and increase in number. The higher your count, the better able you are to fight your HIV and other infections.
- Recent health history. Your doctor will want to know if you are feeling healthy and if you have had any infections.
- Results from physical exams. Your doctor will measure things like your weight and listen to your heart and lungs.
Even if the treatment is working and the amount of HIV in your blood is so low that the tests can't find it, you still have HIV or AIDS. You can still give HIV to other people. Your still need to be careful, such as by using condoms and not sharing needles. And remember, the amount of HIV in your blood will increase if you stop taking your medicines.
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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. But unfortunately, there is no break from taking medicines if you have HIV/AIDS. Researchers have found that stopping treatment can make you sicker, can cause drug resistance, and can cause even more side effects. It can also increase your risk of dying. At this time, planned drug holidays are not advised as part of HIV care for any reason.
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More information on Managing your treatment of HIV/AIDS
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Bone Health and HIV Disease (Copyright © Project Inform) - This publication discusses how bone loss affects people who are HIV-positive. It talks about the three common types of bone loss: osteopenia, osteoporosis, and osteonecrosis.
http://www.projectinform.org/publications/bone/
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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_Liver.jsp
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Dealing With Drug Side Effects (Copyright © Project Inform) - This publication gives information on how to cope with the side effects of anti-HIV drugs. It covers fatigue, anemia, headache, nausea and vomiting, diarrhea, weight loss, dry mouth, rash, nerve problems, menstrual problems, and hair loss.
http://www.projectinform.org/publications/sideeffects/
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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
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Hyperlipidemia - This fact sheet discusses what hyperlipidemia is, the signs and symptoms of hyperlipidemia, and how it can affect HIV treatment regimens.
http://www.aidsinfo.nih.gov/contentfiles/Hyperlipidemia_FS_en.pdf
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Lactic acidosis - This fact sheet explains what lactic acidosis is, the symptoms, and risk factors for lactic acidosis in people with HIV.
http://www.aidsinfo.nih.gov/contentfiles/lactic%20acidosis_fs_en.pdf
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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
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Content last updated July 01, 2011.
Resources last updated July 01, 2011.
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