A Practical Guide to HIV Drug Side Effects


2. Dealing with Side Effects

What are side effects? Why do they happen?

Medications often produce more than one effect in the body. In the case of antibiotics, for example, there is the desired effect (killing a bacterial infection) and there are also unintended effects (the nausea or changes in taste that antibiotics can cause.) These unintended effects are called drug side effects, and they can range from mild to annoying to life-threatening.

Some side effects will create obvious changes you can see or feel; others will not. Instead, they will cause changes in lab results. For example, you might not feel it if a drug stresses your liver. But your lab results will show changes in liver enzymes or liver function tests that will tell your doctor the drug has a negative effect on your liver.

Other side effects can be more difficult to determine since they can develop very slowly over time. For example, it is thought that some antiretroviral drugs can cause or contribute to bone disease. However, this is something that can often not become obvious for many years. As a result, the relationship between a particular drug and a particular side effect can be hard to pinpoint.

In this guide, we focus on the short-term side effects commonly faced by people living with HIV. There are other, long-term health issues that can also affect people with HIV more often than HIV-negative people. These include heart disease, bone disease and brain function issues. CATIE has other information on those topics. Visit www.catie.ca or call 1-800-263-1638 for more information.

Starting treatment, adjusting to treatment

Many antiretroviral drugs that keep HIV under control have side effects, causing changes of various kinds. But not all people with HIV who take antiretroviral therapy or other medications for HIV-related conditions will experience side effects from their drugs. We are lucky to be living in an era in which many of the newer medications used to treat HIV cause far fewer side effects than were seen in the early years of the HIV epidemic.

Many people are able to stay on their medications for years with few, if any, side effects. When side effects do occur, they are often only temporary and will disappear after a few days or weeks. There can, however, be side effects that last as long as the drugs are continued; in some cases, these side effects will remain even after the drugs are stopped.

People who are considering antiretroviral therapy are often concerned about side effects. Here’s something to consider: If you talk to your doctor about possible side effects before starting treatment, you will be better prepared to deal with temporary, minor problems that can happen as you adjust to treatment. If there is a side effect that can be severe or life-threatening, you will know what to watch for.

People sometimes experience headaches, nausea, muscle pain, diarrhea or dizziness while their bodies adjust to a new medication. These side effects may disappear in two to six weeks. The same can hold true for other, more specific symptoms. In general, as the body adjusts to a medication, many symptoms can diminish or become more manageable.

Many people who start antiretroviral therapy find the side effects to be much more manageable than they expected. At the least, knowing the side effect will improve over time can make it easier to convince yourself to stick with a particular medication.

If side effects are a problem for you, remember you are not alone. Countless others are feeling the same thing. Even if your symptoms seem too awful to handle, talk to others and ask what has worked for them. Try to hang in there for at least six to eight weeks after your medication is introduced, if you possibly can.

Even if you’ve been taking a drug for a while, new side effects can appear at any time. Never say to yourself: “I’ve been on this drug combination for three years so what I’m feeling couldn’t possibly be tied to the medications.” It could.

Figuring out the cause of what you are feeling

Always seek a full diagnosis from your doctor regarding all symptoms. What you’re feeling could be from your medication, but it could also be a hormone problem, a nutrient deficiency, an infection, depression, HIV infection itself or something else.

Determining what could be contributing to a given side effect can be difficult, and an obvious place to start is by discussing the problem with your doctor. Doctors who have worked with many people living with HIV are usually familiar with the majority of likely drug side effects.

You can also look at the information available on a particular drug. The product monograph or prescribing information for a drug — the official, approved document that summarizes what is known about it — will normally contain a fairly comprehensive list of all known side effects. In some cases, these lists can be very long and seem to include every possible side effect known. However, if you see a symptom you are experiencing listed as one of the common side effects, this is a hint your drug could be the cause.

Two other things are important to remember. First, it is always possible that you could be the first patient to ever experience a particular side effect. This isn’t likely, but it is possible. The fact you don’t see a side effect listed does not mean it is impossible the drug is causing this problem in you.

Second, even if a drug does contribute to a particular problem, it might not be the sole cause. Many symptoms, like diarrhea, fatigue, headache and others, have many possible causes. Before you conclude that a drug is the only cause of your symptom, consider the other possibilities. If a drug is otherwise working well for you, you don’t want to discontinue it needlessly.

In each section of this guide, we discuss the possible contributing causes of symptoms to help you untangle what’s causing what.

Talking to your doctor

Many people don’t bring up all of their current problems when they meet with their doctors. This can be because of the limited time available during an office visit. Some people feel that all they have time to discuss with their doctors is their latest lab results, and not all doctors will specifically ask questions about side effects.

If you feel you want more time to discuss the side effects of your treatment, book a separate appointment to discuss the issue. Or consider your pharmacist as another source of information. Pharmacists have a broad base of knowledge about drug side effects and most have computerized systems that put a great deal of information at their fingertips. Your pharmacist can be a valuable resource.

It is crucially important that you bring up the topic of side effects. If you don’t mention that you regularly experience diarrhea or that your fatigue never seems to go away, then your doctor can’t offer help. Do not minimize your symptoms when you are discussing them. Be very clear on the extent of the problem. Feeling like you don’t want to make a fuss, or vaguely mentioning a problem without really describing how difficult it is for you, is not appropriate in this situation. Your doctor could conclude the problem is minor when, in fact, it’s a big concern for you. The one problem that is certain not to be addressed by your doctor is the one that you don’t mention.

With full information, your doctor can fully understand what could be contributing to a side effect and develop a plan to treat it. This can include multiple steps, depending on what possible causes have been identified.

Tracking how you’re feeling

You must be in touch with your body so you’re clear on what you are experiencing and can describe it to your doctor. This leads us to the two most important rules:

Rule #1: Tell your doctor everything, from beginning to end. If a symptom appears, changes, disappears or reappears, tell your doctor what’s up. Write it down so you do not forget.

Rule #2: Always apply Rule #1.

It can be helpful to keep a symptom diary so you can show your doctor a record of everything you have been experiencing. Keeping a daily record as you experience symptoms is better than trying to remember them later.

We have included here My Health Map, which is a simple way to track what you’re feeling by drawing on a silhouette of a body and answering a few questions. Photocopy the map and use it to keep track of your symptoms over time. Or use a personal health record, which you can use to record many aspects of your HIV care.

The key things to report to your doctor about any given symptom are these:

Frequency: How often do you experience it? Is it something you only notice a couple of times a month? Multiple times every day? All day, every day?

Intensity: Is this a minor problem or something severe? If you rank it on a scale from one to five, where does it fall? If the intensity varies, noting this in detail with each occurrence can be part of the daily record you keep.

Duration: Is this a problem that lasts only a few minutes or does it continue over many hours or days? When it happens, does it come and go, or does it continue without a break?

Pattern: Can you identify any pattern related to when and why the symptom occurs? Does it only happen at a certain time of day? Does it occur shortly after you take your drugs? If it’s a stomach or gastrointestinal symptom, is there any pattern related to eating particular foods or beverages? Does your level of physical activity affect it? Does it only occur at night?

Treatment: Is there anything you have found that helps?

Perhaps most importantly, tell your doctor if a side effect is adversely affecting your life in important ways. If you have taste changes that make food unappealing, with the result you don’t want to eat, that’s important. If you have diarrhea so often it keeps you from leaving the house, that’s important. This is true for the whole list of symptoms that can cause undesirable changes in your life.

The benefits of subduing side effects

The goal here is to create an approach that will allow you to benefit from your drugs while avoiding the side effects that can make taking them difficult. There are two potentially huge benefits to this approach:

First, you are much more likely to properly adhere to your antiretroviral therapy, which means sticking to your drug schedule and taking your drugs exactly as prescribed and directed. Always taking your drugs as directed (instead of skipping the Sunday morning pills because you’ve been invited to brunch and don’t want to be sick to your stomach) means you’re much less likely to experience drug resistance. That means the ability of your drugs to keep you healthy can remain effective for years.

And last, but most assuredly not least, your quality of life can be immensely improved when difficult side effects are eliminated or lessened. It’s all about living well with HIV, not just longer.

Not only men live with HIV

It seems an obvious statement, but the fact is that men have made up the large majority of people who have taken part in clinical trials of antiretroviral drugs. Therefore, much of what we know about how well a drug works and what side effects it causes really only applies to men. There has long been a concern that many clinical trials enrolled too few women to be able to detect any difference in how women react to drugs. However, most recent studies have not found significant differences between men and women. Unfortunately, we know almost nothing about the impact of antiretroviral drugs in trans people.

One major known exception is that women have a higher risk of both liver toxicity and rash with the antiretroviral drug nevirapine (Viramune), a risk that is related to their CD4 count. For this reason, nevirapine is not recommended for women with CD4 counts over 250 (for men, the cutoff is 400). Nevirapine is a drug that is less commonly used in Canada now. As discussed in the section on Body Weight and Body Shape Changes, there can also be some differences between men and women in the body shape changes known as lipodystrophy syndrome.

The other consideration is the possibility of drug side effects on the developing fetus in someone who is pregnant. Canadian guidelines recommend antiretroviral therapy during pregnancy, both for the health of the parent and to help prevent HIV transmission to the baby. However, certain drugs are known to cause side effects in pregnancy and others may harm the fetus and so should be avoided.

Drugs that we currently know should be avoided in pregnancy include delavirdine (Rescriptor), nelfinavir (Viracept) and the combination of ddI (Videx EC) and d4T (Zerit). However, it is important to always check the latest treatment guidelines for current recommendations. In addition, there is good information on this subject in CATIE’s publication You can have a healthy pregnancy if you are HIV-positive.

Drug interactions

Sometimes when people take medications for more than one condition at the same time, these medications react with each other. This reaction is called a drug interaction. An example of a drug interaction occurs 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 that drug in the body, which can improve its efficacy but can 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 this case, the second drug’s effectiveness can be diminished. If the affected drug is an antiretroviral medication, this can lead to drug resistance and fewer treatment options for the future.

Drug interactions are not always obvious and can take various forms. Some occur immediately after the drugs are combined; other interactions do not cause any noticeable problem for weeks or longer.

Ask your doctor, pharmacist or naturopathic doctor to check for possible interactions with other drugs or treatments, including herbs and supplements, you may be using. Many pharmacies now have on-line programs that check for possible drug interactions. However, if you obtain your prescriptions at more than one pharmacy, be sure each pharmacist is aware of all the other drugs you are taking.

You can look into drug interactions on your own with other resources. At www.aidsmeds.com, place your cursor over Treatment and then click on Check My Meds. You can then enter all your medications, nutrients, herbs and various foods (like garlic or grapefruit, both of which are known to cause drug interactions). The tool will then give you information on all the possible interactions known to occur among these factors.

The University of Toronto provides HIV drug interaction tables at www.hivclinic.ca. Or, you can go to www.hiv-druginteractions.org.