A Practical Guide to HIV Drug Treatment for People Living with HIV


4.2 Making Your Treatment Work Long-Term

How to keep your treatment working… and why you don’t want it to fail

Regardless of the particular drugs you’re taking, your drugs will only work when you take them. Duh, you say, but remembering to take your pills at the right times every day isn’t always easy. And sticking to your pill-taking schedule is very important because these drugs leave the body very quickly. You need to have a certain amount of antiretroviral drugs in your blood to keep the virus suppressed. The goal of your pill-taking schedule is to ensure that the drug levels in your blood stay above that level. Missing doses leads to drug levels to drop too low to control the virus.

Worse yet, those low drug levels can lead to drug resistance. Bottom line: If you develop resistance to a drug, the drug won’t work for you again—ever. It’s possible that you and your doctor will be able to find something else, but it’s better to keep your current treatment working than it is to burn through your options.

Your doctor and pharmacist may have practical tips to help you adhere to your pill-taking schedule, so be sure to discuss this with them before starting your treatment. Here are a few tips and tricks that some people have found useful:

  • Many doctors and pharmacists recommend practicing with jellybeans, Smarties or mints for a couple of weeks before starting the real treatment. It may sound silly, but if you find yourself forgetting jellybeans, that flags a problem you can address before you start taking the real pills.
  • Every week, divide your pills into your doses for each day. Use plastic pill boxes (sometimes called “dosettes”) with separate compartments for storing each day’s supply of pills. Some pharmacies will package your pills in bubble-packs according to your daily dosing schedule.
  • If remembering to take your dose on time is difficult, wear a watch with an alarm, set the alarm on your cell phone, or carry a small medication “beeper” (talk to your pharmacist about getting one) as a reminder. This can be particularly useful when you are travelling. (Most medications still work even if you don’t take them at exactly the same time each day. Talk to your pharmacist or doctor to find out how much wiggle room you have.)
  • Try to fit your pill-taking schedule into your everyday routine. Keep your medications where you’ll be reminded to take them—near your bed, in a kitchen cupboard you open frequently, or somewhere else that’s safe and where you will be likely to see them and remember to take them.
  • Ask your nurse or pharmacist for directions on how to store your pills—some may need to be refrigerated. Check the expiry date on the bottles from time to time.
  • To avoid running short of meds, keep a small supply of medication in places you frequently visit—at your family’s or partner’s house, at your workplace—as long as you’re not concerned about people accidentally finding them. If you’re going on a trip, pack the number of pills you’ll need for the time you will be away plus a few extra doses in case your plans change.
Talk to your doctor and find a regimen that works for your schedule. If you can’t find a regimen that suits your lifestyle, there will always be adherence problems.
Adjust the meds to your life; don’t adjust your life to the meds.

If you are having trouble taking your drugs as they were prescribed, don’t be afraid to get help. Or maybe you’re dealing with depression or substance use—issues that will affect more than just your adherence to your HIV treatment. It’s important to acknowledge and deal with those issues as well.

If all the tricks in the world don’t help you stick to your pill-taking schedule, you and your doctor may need to consider switching to a new combination. It will be important to figure out what the problem was the first time around, so it doesn’t get repeated. For example:

  • Did you have trouble with a twice-daily regimen because of a busy schedule? If so, a once-a-day regimen might be the answer.
  • Was it a specific side effect that led you to skip doses? There may be ways to manage the side effect, or there may be other drugs that are less likely to cause the problem.
  • Are you OK until the weekend rolls around, and then it’s party time? A bit of strategic thinking might help you stick to the plan even if you’re partying—or you might need to look at your alcohol or drug use and see if it’s causing problems.

You may sometimes feel you’re being lectured about adherence. Missing an occasional dose is not the end of the world, so don’t panic if you fall asleep too early, get caught at work without a dose, or just plain forget once in a while. Do the best you can: you’ll keep your drug combination working as long as possible, and do yourself the most good in the long run.

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Making sure your drugs play well together

You’re taking great pains to make sure your treatment works as planned. You don’t want to find that it has failed despite your best efforts and near-perfect adherence. This can sometimes happen when one drug you’re taking has an unintended effect on another. Such effects, called drug interactions, can occur when one medication affects how another is absorbed, used or flushed out of the body. In some cases, this can be a problem.

Drug interactions can have several effects. One is that one drug can slow down the breakdown of another drug in the body. This can increase the level of the drug in the body, which might improve its efficacy but could also lead to more intense side effects or even toxicity. A drug interaction can also have the opposite effect: sometimes one drug will speed up the breakdown of another. In that case, the second drug’s effectiveness may be diminished. If the affected drug is an antiretroviral medication, this can lead to drug resistance.

Interactions can also affect the likelihood of side effects. If two drugs tend to cause the same type of side effect, using them together may increase the chances that a serious side effect will occur. For example, a couple of older drugs—ddI and d4T—have a tendency to cause peripheral neuropathy (nerve damage that affects the hands and feet). Combining these drugs increases a person’s risk of neuropathy, so ddI and d4T should not be used in the same combination. (Fortunately, these two drugs are rarely prescribed in Canada, alone or together, since many more tolerable drugs are now available.)

Drug interactions are not always obvious. They can take various forms: some occur immediately after you first combine the drugs, and Making your treatment work long-term illustrationothers do not cause any noticeable problem for weeks or longer.

There are no foolproof ways to prevent all possible drug interactions. Most studies have only looked at the interactions between two drugs at a time, and many people take far more than that. Add the possibility of interactions between multiple drugs and foods and herbs and you get the picture—it’s complicated! However, there are several steps you can take to try to ensure that it is safe to combine all the things you’re taking:

  • Make sure that your doctor and your pharmacist are aware of every single thing you’re taking—prescription drugs, over-the-counter drugs, street drugs, herbal and nutritional supplements, or anything else. You can do a “brown bag” checkup—put all your medications and supplements in a bag and let your doctor take a look. If you know your medical visits are too rushed for this, make a special appointment and request the extra time.
  • Your pharmacist can help you avoid drug interactions. Your pharmacist is often the best-informed member of your healthcare team when it comes to this topic. Also, they can usually make the time to review your prescriptions, especially if you request it. Most pharmacies now have computer programs that can warn of any potential drug interactions if they have a complete list of all agents being taken.
  • Possible drug interactions can get overlooked if you have more than one doctor or use more than one pharmacy. If you have more than one doctor writing prescriptions for you, let each one know about everything you are taking. If at all possible, use the same pharmacy for all your prescriptions.
  • You don’t need to check interactions at every single visit—just when your treatment changes. Reassess your list every time you are prescribed a new medication or decide to add a herb, supplement or over-the-counter product. You may want to do that brown-bag thing again.
  • Lastly, you can do some checking on your own with a great web resource available at www.aidsmeds.com. From the homepage, click on “My Cool Tools,” then “Check My Meds.” From there, you can key in all the drugs, nutritional and herbal supplements, and various foods (such as grapefruit or raw garlic, both known to cause certain interactions) that you are taking. Then click on “Check Interactions” to find out about any possible interactions.
I decided to stop taking meds altogether. I told my doctor and he advised me not to, but I wanted some life back. I eventually realized that if I didn’t take my meds, I would die. It took me three months to decide that I wanted to live, and I went back on meds.

In some cases, there are drugs that absolutely cannot be used together and the only solution is to stop taking one of them. In other cases, it may be possible to use certain drugs together provided you make certain adjustments (for example, change the time when you take them).

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Stopping treatment?

To put it plainly: to the best of our knowledge, HIV treatment is a lifelong necessity. This is because HIV can stay inside infected cells of the body for a very long time. It only takes a few infected cells to restart the whole process of HIV replication once treatment is stopped—just as it only takes a few remaining coals to restart a fire that you had “almost” put out.

What about taking breaks? It’s not hard to think of the advantages—fewer pills, lower cost, fewer side effects and a general break from the constant pill-taking. Some people have tried taking “drug holidays”—occasional breaks from their treatment. We know that such drug holidays are not a good idea, due to the risk of drug resistance.

Several large clinical trials have looked at the outcomes of planned or “structured” treatment interruptions, in which people went off their antiretroviral drugs for a specific length of time or based on their CD4 counts. The idea was that as long as CD4 counts were above a certain level, it might be safe to go off treatment without becoming ill. Unfortunately, and to many people’s surprise, these treatment interruptions proved to be more harmful than helpful for many people living with HIV. In one large clinical trial, people who interrupted their treatment were nearly three times more likely to die or develop serious infections than people who stayed on treatment continuously. The people who took breaks from their treatment were more likely to experience many different kinds of serious health problems, including cancer, life-threatening infections, heart attack, stroke, kidney damage and liver damage.

While treatment interruptions may not necessarily be harmful for everyone on treatment—for instance, they may be relatively safe for people with higher CD4 counts—they are generally not recommended due to the possible risks. Anyone considering an interruption in their treatment should discuss the issue with their doctor very carefully before stopping any of their medications. A careful plan of how to stop all the drugs in your combination is needed to ensure that drug resistance does not develop.