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A Practical Guide to HIV Drug Side Effects

Introduction


The availability of HAART (Highly Active AntiRetroviral Therapy) — also referred to as a drug cocktail or combination therapy — has extended the lives of many people with HIV/AIDS (PHAs) and greatly reduced deaths due to AIDS and related complications. However, HAART medications (meds) can cause problems for your body that will create troubling symptoms. They’re called drug side effects, and they can range from mild to annoying to life-threatening. Many, but not all, PHAs who take HAART will experience side effects from these drugs. For some people, the side effects are temporary and disappear after a few days or weeks. For others, they can last as long as the drugs are continued and, in some cases, will remain even after drugs
are discontinued.

For lots more information about Highly Active AntiRetroviral Therapy, see CATIE’s Practical Guide to HAART, available at www.catie.ca/PG_HAART_e.nsf or by calling 1.800.263.1638.

A few tips may help you handle side effects. First and foremost, you must be in touch with your body (so you’re really clear on what it’s experiencing and can describe it) and with your doctor (so a medical decision concerning your symptom can be made). 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, reappears...tell your doc what’s up (and write it down so you do not forget).
    • Rule #2: Always apply Rule #1.
If you talk to your doctor about possible side effects before starting treatment, you’ll be better prepared to deal with many of the minor problems. If there is a side effect that might be severe or life-threatening, you’ll know what to watch for. If it’s likely that this or that side effect will improve over time, it will be easier to convince yourself to stick with a particular drug if you know that the problem it’s causing may soon improve.

Know that while your body adjusts to any new med, you may experience headaches, nausea, muscle pain, diarrhea or dizziness - all of which may disappear in two to six weeks. The same may hold true for other, more drug-specific symptoms. In general, as your body adjusts to a drug, many symptoms may diminish or become more manageable.

It’s important to remember that you are not alone. Countless others are feeling the same thing. So even if your symptom seems too awful to handle long-term, talk to your co-sufferers, ask what has worked for them, soak a few shoulders if you must, and try to hang in there for at least six to eight weeks after a med is introduced, if you possibly can.

You should also know that new side effects may appear at any time. Repeat, any time. Never say to yourself: “I’ve been on this drug combination for three years now so what I’m feeling couldn’t possibly be tied to the medications.” It could. And refer to Rules #1 and #2.

Regardless of the specific symptom, always seek a full diagnosis from your doctor on all possible contributing causes. Yes, what you’re feeling may be from the med, but it could also be a hormone problem, a nutrient deficiency, an infection, depression, HIV itself or any of the countless other contributors to symptoms that are discussed in this guide. The approach that’s most likely to eliminate your symptoms will address all of these and perhaps may make switching or stopping medicines unnecessary.

Changing drugs is your final option. The possibilities will, of course, depend on your treatment history and current needs. But be sure to ask your doctor. If you don’t, you may not find out that there is a good alternative. Your doctor may not have mentioned this because you haven’t reported how troubling your symptoms are. See Rule #1.

The goal here is simple: to allow you to have your cake and eat it, too. In other words, to create an integrated approach that will allow you to gain the benefits that your meds can give you, while avoiding the side effects that can make taking them so difficult. In the end, there are two potentially huge benefits to this approach:
    • First, it can help prevent treatment failure, since you are much more likely to properly adhere to your drug regimen - which means sticking to your pill-popping schedule and taking your drugs exactly as prescribed and directed - when they aren’t making you feel sick or causing symptoms that you hate. And the result of always taking your meds as directed - instead of skipping the Saturday night dose because you don’t want smelly gas at the party, or the Sunday morning pills because you’ve been invited to brunch and don’t want to be sick to your stomach - is that you’re much less likely to experience drug resistance. That means that your medicines - and their ability to save your life - may remain effective for years instead of months.
    • And last, but most assuredly not least, your quality of life can be immensely improved when life-degrading symptoms are eliminated or, at least, lessened. It’s all about living well with HIV, not just longer.
Now to the nitty gritty. The most common HIV drug side effects are listed in this guide, with tips on how to handle them. Wherever possible, information on natural and herbal products that are available in health food stores or pharmacies has been included. Your local AIDS service organization may be able to suggest a health food store in your area where you can shop for some of the supplements listed in this guide. At the back of the guide we’ve listed a few that provide mail-order service.

Don’t forget that treatments taken to relieve side effects - even natural or herbal treatments - can have side effects of their own. Always ask your physician, pharmacist or naturopathic doctor to check for possible interactions with other drugs or treatments you may be using.

You can check into drug interactions on your own with a great Web resource available at www.aidsmeds.com. At this site, click on “Check Your Meds.” It will allow you to enter all your medications + nutrients + herbs + various foods (like garlic or grapefruit, both known causes of certain interactions), and then give you information on all the possible interactions known between all these things.
 

Revised 2006

Authors and Contributors

Related links

Complementary Therapies Guide

Other Practical Guides

Supplement Sheets

The Positive Side

 

Decisions about particular medical treatments should always be made in consultation with a qualified medical practitioner who is knowledgeable about HIV-related illness and the treatments in question. MORE

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