Staying on a therapy is difficult under the best of conditions. Even doctors and nurses find it difficult to take a simple course of antibiotics. Taking medicines for HIV and other conditions sometimes makes a person take a dozen or more pills a day, with specific timing and diet restrictions. So it’s little wonder that most people have some trouble keeping up with the program. Therefore, taking an honest and objective view of your life and daily activities can help you adhere to therapy.
Things to consider before your next regimen
Taking on complex, long-term treatment doesn’t feel natural to most people. However, millions have learned to cope with it, including those who have diabetes and heart disease. Your being ready or able to commit to the demands of therapy is an important consideration to discuss with your doctor.
Carefully thinking about how you might manage side effects will be helpful as well. Some people try a “dry run” before beginning therapy, like taking empty gel caps or small candies on the prescribed schedule while sticking to any diet requirements. This can help you figure out the timing of the doses.
To find a treatment regimen you can live with, it’s necessary to settle two sets of requirements: yours and the drugs’. Drugs can differ in many ways including:
- taken with/without food,
- taken by mouth or injection,
- number of doses a day,
- number of pills a day,
- used or not used with other drugs or complementary therapies,
- possible side effects, and
- special handling like refrigeration.
Similarly, people differ widely in their habits and needs. A few examples are:
- rigid work schedules,
- constantly changing schedules or crossing time zones,
- many medical appointments,
- taking care of family or others,
- need reminders for taking meds,
- difficulty eating, or not eating regularly, or
- other challenges like substance abuse, homelessness or mental illness.
Discussing with your health provider the issues bulleted above can lead you both to making decisions on a regimen that fits your lifestyle. There may not be a perfect regimen for you, but some options are more and less easy to adapt to your life. The goal is to select a regimen you can live well with.
Adherence is more than just taking pills
Properly adhering to your medicines involves sticking to an entire regimen:
- taking the full dose every time,
- taking your pills on time every time,
- keeping an eye on food restrictions, and
- monitoring for interactions with other meds, herbs and supplements.
Missed doses …
Some studies report that nearly all who failed to reach and sustain an undetectable viral load had greatly changed from their prescribed regimens for a month or more. One study showed that of those who missed one or more doses:
- 40%Â Â Â simply forgot
- 37%Â Â Â slept through a dose
- 34%Â Â Â were away from home
- 27%Â Â Â changed their therapy routine
- 22%Â Â Â were busy
- 13%Â Â Â were sick
- 10%Â Â Â had side effects
- 9%Â Â Â were depressed
People taking HIV meds cannot stay on a regimen if they don’t have constant access to their drugs. Many find themselves running short of a drug for various reasons … often because of poor planning. But skipping doses because you’ve run out of a drug is still skipping doses
Keeping a steady supply of meds requires you to work closely with your doctor and pharmacist. And, when using state AIDS Drug Assistance Programs or patient assistance programs, even more of the burden falls on you to make sure you order supplies as needed. Some drugs need to be stored differently than others, like being refrigerated.
Once storage is addressed, it’s helpful to put aside a full week’s supply as an emergency stash, in an accessible place, right after getting your drugs. Your stash should be rotated or replaced once a month to keep it fresh.
People dealing with major life problems like active drug use, depression or homelessness face difficult challenges with adherence. But that doesn’t mean it’s impossible. Consulting a mental health expert can help as well as asking your regular doctor.
Many things can get in the way of taking your meds properly:
- taking care of children or other family members
- feeling good
- forgeting to take the pills
- Saturday and Sunday schedules
- not refilling on time
- side effects
- job concerns
- hospital stays
- drinking or doing drugs
- sleeping a lot
- fear of the medicines
Only you can decide whether you’re ready to stay on therapy. If you’re not ready, you may be better off not starting at all. This doesn’t jeopardize your ability to use treatment later. In contrast, misusing your drugs can jeopardize your future options by encouraging drug resistance, which can affect full classes of HIV therapy.
Findings ways to adhere
Adherence strategies may not work for everyone and must vary from person to person. For example, some people have a great need for privacy around their HIV status and taking medicines. This places greater emphasis on planning ahead for moments of privacy each day. Still, even in the most challenging situations, people have daily routines that can be used as triggers for taking meds. It may take a few tries before you find the approach that works best for you.
- Integrate your regimen into your routines. Use a daily activity, one you do every day without fail like brushing your teeth, to prompt you to take your meds. Take them before the activity; it’s easier to remember.
- Count out your meds each week and use a pillbox, Mediset or nail organizer to hold each dose. Meds can also be put into separate bags, or even film canisters for privacy. Some people put the morning dose by the coffee pot, and evening dose by the TV.
- Use an alarm to remind you when to take your meds, like the one found on most cell phones.
- Use a daily planner, especially at the start of a new regimen and insert your doses as if they were appointments.
- Evaluate your regimen about 2 weeks after you start it. It may take a few weeks of experimenting to figure out how to best schedule your meds to fit your routine.
- Plan ahead for changes, like weekends, vacations or moves.
People often miss doses when they’re away from home.
- When traveling, keep all of your meds with you. Baggage can be lost or delayed.
- Plan ahead for privacy if you need to hide the fact that you’re taking meds. You could adjust your lunch or break schedules.
- Keep a diary. Write down what’s important to you: when you took treatment, reason for missed doses, how you feel, etc.
- Use a support network to remind you of your medication needs, like a treatment buddy.
- Find emotional support.
Building a support network for yourself
Setting up good relationships with your doctor is critical for maintaining your adherence. Your doctor should know the current standards of care for treating HIV. S/he should also spend time with you to fully explain the benefits and challenges of therapy.
It’s important to clarify your regimen with your doctor. Know what drugs you’re taking and why. One survey showed that the vast majority of people were unclear of their regimens only 10 minutes after talking to their doctors. Some were confused about diet restrictions. Others were unclear on the correct dose or the timing of them.
One way to understand your regimen is writing down instructions and repeating them back to your doctor. You can check them again with your pharmacist when you pick up the drugs.
It’s important to know what and when you can and cannot eat. Learn exactly what is meant by the drug’s diet requirements. For example, many people think Crixivan (indinavir) shouldn’t be taken with food. However, it just shouldn’t be taken with fatty foods.
Similarly, some believe Viracept (nelfinavir) must be taken with food, when in fact, the label says only that it should be taken with food. In other cases, like for Videx (didanosine, ddI), taking it with food is recommended only to lessen its side effects or unpleasant aftertaste.
Ask your doctor to be clear about side effects and how to manage them. Being mentally prepared for side effects can make them easier to manage if they occur. Bringing another person to appointments ensures that 2 people can ask questions and get information.
It’s also important to find out what to do if you miss a dose … if you should make it up or just take the next scheduled one at the usual time. Also, contact your doctor immediately if you can’t take a full dose for whatever reason. It may be necessary for you to stop all of your HIV drugs until you’re able to take a complete dose again.
Committing to staying on your therapy
It’s important to adhere to all your HIV drugs because not taking them as prescribed every day will lead to inadequate levels of the drugs in your blood. This can cause certain things to happen, including detectable viral load, disease progression or resistance.
If therapy is not taken properly (like skipping doses, taking fewer doses or not taking them on time), drug resistance will probably develop faster. In this case, the full benefits of your meds can be quickly lost.
To prevent drug resistance, it’s important to keep enough drug in your bloodstream 24 hours a day. Each time you miss a dose, the drug blood level falls below the lowest necessary level for several hours. This gives HIV an opportunity to develop resistance to the drug(s).
Then, resistance to one drug may result in resistance to other drugs of the same class, called cross-resistance. This is particularly true about NNRTIs. High level resistance to one protease inhibitor can pass on some degree of resistance to almost all the others.
There’s little debate about it being difficult to always adhere to therapy. However, there’s plenty of evidence that people who are adherent have better health outcomes. While no single skipped or late dose is by itself likely to trigger resistance, the more often they occur the more likely drug resistance may develop.
Some final thoughts
Perhaps the way that adherence to HIV therapy may differ from other illnesses is that the burden for adherence is more on the mind and less on the immediate reaction of the body. Not taking meds as prescribed in most illnesses quickly produce symptoms. This is not the case with HIV most of the time.
Some doctors have less time to spend educating their patients. As well, most doctors have little or no training in the tools that help people stay on their treatment regimens. Sometimes you may need to seek help from others, like support groups, case managers or treatment buddies.
Work is underway for making treatments easier to use, more easily absorbed, have fewer side effects and drug interactions, or dosed once a week or even once a month. In the meantime, there are many things you can do to make the most out of your regimen. Consider the ones presented here or come up with your own that make the most sense for your life.