Dealing with Side Effects

Some side effects will create obvious changes that 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, which will tell your healthcare provider that the drug is having a negative effect on your liver.

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

Short term side effects happen soon after starting a medication, and may resolve on their own within several weeks. Long-term side effects are those that typically last months or years. Long-term health issues can also affect people living with HIV more often than HIV-negative people. These include heart disease, bone disease and brain function issues. 

Starting treatment, adjusting to treatment

Many antiretroviral drugs that keep HIV under control can have side effects, causing changes of various kinds. But not all people living with HIV who take antiretroviral therapy or other medications for HIV-related conditions will experience side effects. 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 many 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. These are short-term side effects. However, there may be side effects that last as long as the drugs are continued. In some cases, these side effects will take a long time to diminish even after the drugs are stopped. These are long-term side effects. 

People who are considering HIV treatment are often concerned about side effects. Here’s something to consider: If you talk to your healthcare provider or pharmacist 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, regardless of whether the medication is for HIV or another condition. These side effects often 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 these days find side effects to be much more manageable than they expected. Knowing that the side effect will improve over time can make it easier to continue 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, try talking 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 healthcare provider 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.

Figuring out 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 healthcare provider. Healthcare providers who have worked with people living with HIV are usually familiar with most 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 —contains a 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 a symptom you are experiencing is listed as one of the common side effects, this is a hint that 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. If a side effect you are experiencing is not listed in the product monograph, it is still possible that the drug is causing this problem in you.

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

Talking to your healthcare provider

Many people don’t bring up all of their current problems when they meet with their healthcare providers. 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 healthcare providers are their latest lab results, and not all healthcare providers will specifically ask about side effects.

If you would like more time to discuss the side effects of your treatment, book a separate appointment to discuss the issue. Consider also talking to your pharmacist as another source of information. Pharmacists are knowledgeable about drug side effects and can be a valuable resource to you.

It is important that you bring up the topic of side effects with your healthcare provider. If you don’t mention that you regularly experience diarrhea, or that your fatigue never seems to go away, then your healthcare provider can’t offer help. Don’t 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, will make it hard to get the right help. Your healthcare provider might conclude that the problem is minor when, in fact, it’s a big concern for you. 

When you give your healthcare provider all the information, they can fully understand what could be contributing to a side effect, and they can develop a plan to treat it. This plan may include multiple steps, depending on the possible causes identified.

Tracking how you are feeling 

You must listen to your body so that you are clear on what you are experiencing and can describe it to your healthcare provider. This leads us to the two most important rules:

Rule #1: Tell your healthcare provider everything, from beginning to end. If a symptom appears, changes, disappears or reappears, tell your healthcare provider these details. Write it down, before your appointment, so that you do not forget.

Rule #2: Always apply Rule #1.

It can be helpful to keep a symptom diary. This can help you describe what you have been experiencing to your healthcare provider. Keeping a daily record and taking notes of symptoms, as you experience them, will help you remember the details later. 

For any symptom, the key things to report to your healthcare provider are:

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 the intensity varies, then noting this in detail every time it happens 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 of when and why it occurs? Does it only happen at a certain time of day? Does it occur shortly after you take your HIV 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:  Have you found anything that helps?

Perhaps most importantly, tell your healthcare provider if a side effect is affecting your life in important ways. If your sense of taste has changed and food has become unappealing - so much so that you don’t want to eat - then that’s important to tell your healthcare provider. If you have diarrhea so often that it keeps you from leaving the house, that’s important to tell them, too. This is true for any symptom that is negatively affecting your quality of life.

The benefits of controlling side effects

The goal is to create an approach that allows you to benefit from your drugs while avoiding the side effects that can make taking them difficult. This is very important because you are much more likely to adhere to your antiretroviral therapy, which means taking your drugs exactly as prescribed and directed. Always taking your drugs as directed (and not skipping any doses) reduces the possibility of drug resistance. This means that your drugs can remain effective for years and keep you healthy.

Perhaps most importantly, your quality of life improves when difficult side effects are eliminated or lessened. HIV treatment is about living well with HIV, not just living longer.

Not only men live with HIV

In the history of HIV drug development, cisgender (cis) 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 HIV drugs, such as how well a drug works and what side effects it causes, really only applies to cis men. There has long been a concern that many clinical trials enrolled too few cis women and transgender (trans) men and women, making it difficult to detect physiological differences in how different bodies react to drugs, especially for people with a uterus. 

Cis women have a higher risk of both liver toxicity and rash with an older antiretroviral drug called nevirapine (Viramune). This risk is related to their CD4 count and, for this reason, nevirapine is not recommended for cis women with CD4 counts above 250 (for cis men, the cut off is 400). Nevirapine is a drug that is much less commonly used in Canada now. 

Also important to consider 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 prevent passing HIV 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. 

Drug interactions

Sometimes when people take different medications for multiple health conditions, 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 or performs in the body, or how it is removed from the body. In some cases, a drug interaction can be a problem.

Drug interactions can have several effects. One effect is that Drug A can slow down the breakdown of Drug B in the body, which can then increase the level of Drug B in the body. This might improve the efficacy of Drug B, but it might also lead to more intense side effects or even toxicity. A drug interaction can also have the opposite effect: Drug A might speed up the breakdown of Drug B. In this case, the level of Drug B decreases, which might make it less effective.  If the affected drug is an antiretroviral medication, this can lead to drug resistance and fewer HIV treatment options for the future.

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

Ask your healthcare provider or pharmacist to check for possible interactions with other drugs or treatments, including any herbs and supplements you are using. 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. The University of Toronto provides HIV drug interaction tables at www.hivclinic.ca. Or, you can go to www.hiv-druginteractions.org.