10 Questions to Ask Before Starting HIV Treatment

Deciding when to begin treatment is one of the biggest decisions you’ll make after diagnosis

If you’ve been diagnosed with HIV, you’re likely making a number of serious decisions. One of the biggest is deciding when to start therapy. These are 10 of the most important questions to ask yourself before you start taking HIV treatment.

1. Am I ready? The medical community keeps adding to the list of reasons for starting treatment sooner rather than later. But that doesn’t speak to when you should start. First-line treatment regimens are good, but they still require adherence to avoid drug resistance. The biggest variable in sustained treatment success is you, since you are the one who will have to take meds the right way, every day, for the rest of your life.
2. Why do I want to start treatment? Don’t confuse this question with “When does my doctor say I should start treatment?” This is your time to find out what you want to achieve from treatment. This question can shine a light on any reluctance you may have to take care of yourself. It helps clarify what your main motivation will be to take your HIV medications every day.
3. Which regimen will still let me live my life? Choosing a regimen that becomes the focus of your life is not a good idea. The greatest combination of medications available mean nothing if you can’t take them as prescribed. Staying on top of a daily medication regimen can be hard enough—that’s without making radical changes to your daily routine. Before you choose a twice-daily regimen that requires you to take it with food—when you know you regularly skip breakfast and grab dinner at varying times—talk to your doctor about your options. Be honest about whether you can commit to changing your routine. Be realistic about what you are willing to do, choose a regimen that squares with that and take your meds as close to perfectly as you can.
4. Why this regimen? You can let your doctor choose your regimen for you, or you can be involved in the decision. As the person who has to go home and take these medications, the second option is preferable. Since there are a number of regimens for people who are new to treatment, it only makes sense to ask your doctor, “Why this combination, and not that one?” or “Which option do you prefer and why?” Also, if you have specific concerns (i.e., wanting to get pregnant or dealing with sleep difficulties), this is the time to talk them over with your physician.
5. Have I accepted my diagnosis? Going on treatment means acknowledging, each time you take your medication, “I have HIV/AIDS.” What happens on days you don’t want to acknowledge that—to yourself or to others around you? Denial and shame can interfere with your ability to commit to treatment.
6. Who will I tell about my treatment? Don’t underestimate the power of support. Hearing a friendly “have you taken your meds today?” can help keep you on track. And it’s nice to have an extra pair of eyes and ears in treatment discussions with your doctor.
7. What side effects am I willing to live with? Newer, less-toxic medications have fewer, less troubling side effects. Still it’s important to be up front about what side effects you are willing to tolerate, particularly during those first few weeks when your body is adjusting to treatment and side effects are most likely. If your answer is “I don’t want to deal with any side effects,” you might not be ready to start treatment.
8. How will this regimen make me feel? Your doctor may talk only about the likeliest side effects instead of all possible ones. Don’t be surprised. Maybe she thinks talking about them will scare you. But knowing whether a symptom might be related to your treatment is important. So ask your doctor to tell you the range of side effects, and pay attention to what percentage of people get each one so you know how likely it might be for you.
9. What if it doesn’t work? As good as today’s HIV medications are, it’s possible your first regimen might not work for you. Your lab tests could show that your viral load isn’t dropping as much as it should. Or maybe some side effect crops up that makes you want to stop treatment. When you’re researching your first regimen and discussing it with your doctor, consider a second, plan-b regimen, too.
10. Can I stop? HIV treatment is lifelong treatment, and studies show people with HIV see their health slide if they stop taking meds. But you may find that you need the occasional treatment holiday. Talk to your doctor about this before you begin any regimen. This is important because some regimens have to be stopped in a certain order to avoid the development of resistance.

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