When Adherence Seems Impossible...

If you are on antiretroviral therapy, you know how difficult taking your doses exactly as prescribed can be. Below are a few of the reasons why it is so difficult to stick with your meds all the time. Beneath them are some suggested ways to deal with those reasons. Find the reasons that you can relate to and try to take gradual steps to addressing these barriers to your medication adherence. You will then be further up the road to promoting optimal health and well-being.

"I just plain forgot."

"It's so hard on weekends."

"Midday doses drive me nuts."

"I just can't work them into my schedule."

• Choose a regular time and place to count out all your pills for the following week. Separating out your pills ahead of time will save you more time in the end by avoiding opening multiple bottles several times a day. Setting up a weekly pillbox or some other pill organization strategy should become a routine weekend duty.
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• Use a pill box, alarm watch or beeper. Ask your treatment advocate or pharmacists for seven-day pill boxes or an alarm.

• Get several small containers, such as half-size Baggies or 35mm film canisters to organize your future week's medications.

• Place each medication canister or bottle near the place you will take a dose. For example, put the morning dose by the coffee pot and evening dose by the television set.

• Keep Post-It notes on bathroom mirrors, in your car, at a discreet place at work where you will notice, and on your calendar to remind you to take your meds.

• Tape your medication/meal schedule to your refrigerator door, on your calendar, in your car, and wherever you will come across it.

• Plan ahead for changes in routine, such as vacations or changing jobs. Make special plans for weekends and holidays.

• Get a buddy or ask someone you live with (spouse, partner, family member, roommate) to help you remember to take your pills at the prescribed time.

• Be honest with your health-care provider about missed doses or doses taken incorrectly. If they don't know, they cannot help you.

"Side effects are killing me!"

See a health-care provider, treatment advocate or nutrition advocate for advice. They should have updated and practical information on your medications and answer any questions you have on your HIV management.

"I am so tired all the time."

• Discuss the fatigue with your health care provider.

• Eat nutritious foods and get regular sleep.

• Moderate exercise may boost your energy level. Find an exercise you like.

• If your fatigue is related to depression, it is a good idea to address the depression (see "I'm really feeling down" section).

"I can't eat when I need to take my meds."

• Store snacks and bottled water in the car, at work, and with you at all times for medication taking.

• You may need to look into your medication taking routine and plan your meals ahead of time. If you are not taking your medications consistently and precisely, you might be better off delaying treatment. Discuss this with your health care provider.

"I'm really feeling down."

"I feel anxious all the time."

"My life sucks."

• Talk to someone you trust, such as a friend, clergy or therapist, about what you are feeling. You may want to join a support group to share information, concerns, and solve problems with others dealing with similar issues. You can also contact AIDS Project Los Angeles' Mental Health Department at (323) 993-1467 to talk to a trained counselor.

• Seek spiritual or religious support if it's right for you. You can also contact APLA's Spiritual Life Committee at (323) 993-1370.

• Everyone is susceptible to depression. However, people living with HIV can be particularly vulnerable. Ask your medical provider about how they can help you.

"No one knows my HIV status."

"I can't tell anyone at work."

• If you have roommates or visitors and don't want to take medication in front of them, it may help to keep a bottle of water by your bed so that you can take your pills in privacy.

• For dosing at the workplace, the resealable plastic bags (e.g., half-size baggies) can be kept in your pocket or desk drawers.

• At the workplace, you can also adjust your lunch or break schedule to ensure privacy.

"I need a drug holiday."

"My meds remind me that I have HIV."

Taking drug "holidays" may lead to developing a substantially higher viral load and resistance to the drug in as short as a few days. Someone with a high viral load has a great risk of damage to the immune system.

Missing one or two drugs of a "cocktail," rather than stopping the entire cocktail, may also lead to drug resistance. If a cocktail is discontinued, it is sometimes recommended that all the drugs in that cocktail be stopped, rather than just one to two drugs. Drug resistance can limit some treatment options for the future.

"I feel fine, who needs them?"

You may be tempted not to take your meds when you feel well, and end up doing so only if symptoms come back. This behavior greatly increases your chances of developing resistance to your meds. Once you go off meds, your viral load can rise substantially since there would no longer be anything to limit virus reproduction.

"I have to take care of my ill relative."

When caring for a loved one who is very sick, it is important not to ignore your own needs. Be sure to arrange for some backup help so you can have some free time occasionally. It may also be helpful to use a reminder source that works for you (Post-Its, timer, beeper, friends and family members) to remind you when it is time to take your meds.

"I can't get my doctor to listen to me."

"I don't understand why I have to take these meds."

• Ask your doctor questions and demand detailed explanations until you understand everything to your satisfaction.

• Be honest with your health-care provider about missed doses or doses taken incorrectly. If they don't know, they cannot help you.

• Bring a family member or friend to appointments so that two people ask questions and get information.

"I don't have any support. I feel so alone."

Build a support system through joining a support group with other people living with HIV, pets, lovers, friends, family members, books, newsletters, health-care providers, counselors, social workers, or volunteers who help people with HIV. Seek out a "buddy" who can provide you with emotional and social support.

"Someone with HIV I know is still very sick. Why should I go through the same thing?"

Other people's treatment experience may be very different from your own. For example, many people experience no obvious side effects, while others experience several from the same drug. Don't be discouraged by other people's experiences since their experiences do not predict yours.

"I don't think the drugs are working. I don't notice anything different."

The role of the drugs is to prevent further viral replication and to fight a continuous war with the virus. You may not feel that the drugs are doing much, especially if you experience difficult side effects. However, if your viral load is substantially decreasing while your CD4 cells are steadily increasing, that is a good sign that the drugs are indeed working.

"I'm worried the drugs are toxic."

Many people think that side effects and toxicities are the same thing, when in fact, they are not. Toxicities are much less frequent than side effects. A toxicity is serious and has long-term consequences. However, a side effect is short-term and goes away when the drug is stopped.

"What about recreational drugs?"

Little is known about possible interactions of recreational drugs with HIV medications. At least two deaths, reported in the literature, have been attributed to the mixing of ritonavir (brand name Norvir) and ecstasy. There may also be interactions of AZT with methadone, which increases AZT levels. Antiretroviral drugs has also been shown to alter methadone metabolism and increase methadone levels.

Any therapeutic treatment could potentially have serious or life-threatening interactions with recreational drugs, so discuss (anonymously if preferred) any potential drug interactions with a physician or pharmacist.

It is recommended that you eat as much as possible during and after usage to replace the body's energy resources, drink lots of fluids and get lots of sleep.

Using alcohol, methamphetamines and other drugs can also cause you to miss your doses. For example, alcohol may impair judgment by causing sleepiness after drinking and interfering with medication taking. To avoid returning home sleepy and forgetting to take your meds, it is wise to take your meds before going out with friends.

Recreational drugs can also weaken the immune system. If you can't stop, even cutting back can help. Prescription and over-the-counter drugs can also affect your health. Ask your health care provider or treatment advocate about them.

"What about alternative therapies?"

It may be a good idea to ask for a "brown bag medical check-up." Each time you visit your health-care provider, throw all the meds you take into a bag. Include vitamins, nutritional supplements, herbs and prescribed medications. Ask your doctor to have a pharmacist conduct a personalized review of your therapies for safety, appropriateness, compatibility and instructions for use. This will help avoid drug interactions and may help diagnose symptoms caused by drug side effects.

"I have problems getting my meds."

Many pharmacies offer free same-day or next-day delivery and mail order service. APLA offers fact sheets on pharmacies specializing in HIV and their services, in addition to a fact sheet on pharmaceutical payment assistance programs that provide a free supply of drugs or diagnostic tests to people with HIV who don't have insurance and can't qualify for other programs. You can contact APLA's HIV Resource Center at (323) 993-1612 for more information.

Talk to a treatment advocate or health care provider and get the information. APLA offers a wide resource of information at our HIV Resource Center and through our community education forums. Please contact William Strain at (323) 993-1459 for more information.

Nancy Wongvipat is a health educator in AIDS Project Los Angeles' Education Division. She can be reached by calling (323) 993-1511 or by e-mail at nwongvipat@APLA.org.