Making decisions about therapies

January 2007     View PDF     En español

Once you’ve made a treatment decision, consider …

When to start?
Starting any therapy can cause anxiety. There is no one proven “right” time to start anti-HIV therapy, for example, for everyone. There are differing opinions about starting therapy early in the course of HIV infection vs. later. Either choice has possible long-term consequences.

In general, current thinking in the U.S. and Europe is leaning in favor of delaying treatment until there has been a significant decline on CD4+ cell counts. The most recent research shows that this loss can usually be recovered when people start treatment.

In contrast, starting treatment very early, before significant decline of CD4+ cell counts, can force people to begin using up the limited time that each drug will work, earlier than necessary. It may also lead to an earlier risk of developing both drug side effects and drug resistance. These cannot always be corrected so easily. (For more information, read Anti-HIV Therapy Strategies).

While there are instances where using anti-HIV therapies have clearly been shown to be beneficial, when to start therapy remains an individual decision. Most important, it doesn’t make sense to start therapy until you are ready and committed to it.

Making a decision about what criteria you will use as a basis for starting therapy of any kind, anti-HIV therapy, herbal therapy, etc.) puts the decision and control over using therapy in your hands. Making decisions about complementary therapies are often more difficult and complex because there’s a lack of information from studies to help guide decision-making. (Read Herbs, Supplements and HIV.)

For example, you might decide to start an herbal therapy right now, regardless of your CD4+ cell count, your viral load and your overall general health. Or, you might decide to start anti-HIV therapy if your CD4+ cell count has a decreasing trend to below 350 and/or your viral load continues to rise above 50,000 and/or you begin to experience symptoms associated with HIV disease. Deciding on your own criteria, with the guidance of your doctor, lets you be in control of your treatment decisions.

The following factors can help you and your healthcare provider when choosing the best time for you to start therapy: CD4+ cell count trends (consistently decreasing CD4+ cell counts, over time, indicate immune health is declining); the most recent guidelines suggest that anti-HIV treatment should be encouraged when the counts fall consistently below 350 (some guidelines recommend waiting until 200); Trends in viral load (consistently increasing HIV RNA levels, overtime, indicate that the virus is becoming more active; this may either cause more damage to the immune system or might be a signal that the immune system is failing already); Overall general health and the presence or absence of minor symptoms; and Your readiness to start: you should begin treatment when you’re ready for the demands of treatment; without a strong basic commitment, you’re likely to develop poor adherence to your therapy.

 

How to monitor whether therapy is working for you?
Before you start any kind of therapy, it’s important to have realistic expectations around what the therapy will do and to determine how you will monitor to decide if it is working. In terms of anti-HIV therapy, typically you will look for decreases in viral levels (HIV RNA), increases in measure of immune health (CD4+ cell counts) and improvements in your overall general health.

Determining whether a complementary therapy is working, when it doesn’t have any direct anti-HIV activity, can be difficult. How will you decide if that therapy is working for you? How will you determine if it’s worth your money and the risk of potential side effects? (Remember, just because something is available over-the-counter doesn’t mean that there are no risks associated with using it!)

Talk to your doctor and work together to develop realistic ways of determining if the therapy you want to start is working. If after some agreed upon period of time you are not achieving your goals, agree to revisit the use of the therapy approach you are trying. Have these discussions before you start taking the therapy.

How to monitor for (and manage) potential side effects?
Before you start a given therapy, learn about potential side effects, how to monitor for them and how to manage them. Recognize that there is almost no such thing as a drug that doesn’t have side effects. Even aspirin can have potentially fatal side effects if used constantly. Moreover, despite the claims of advertisers, many herbs and supplements can have side effects, some of them serious.

Many people who start or switch to a new anti-HIV therapy will experience some side effects or symptoms. These may include headache, nausea, diarrhea and tension. Often these types of effects go away within four to six weeks. It’s unclear how much of these types of side effects are associated with the therapies and the body adjusting to the medication and how much they are due to stress and anxiety associated with being on therapy.

Not everyone experiences these effects. Some therapies have potentially life-threatening side effects that occur very rarely. Being aware of early signs of these side effects and what to do if they arise is important. Moreover, if you have a very clear understanding of what the potential side effects of a given therapy are, you can prepare to manage them should they arise. (Read Drug Side Effects Chart.)

Talking with your doctor about side effect before you start a therapy allows you to have realistic expectations and come up with criteria around when you might consider stopping or switching therapies based on side effects concerns. You will be able to more fully participate in monitoring for side effects and identifying early signs of side effects and possibly intervene before they become a problem.

When to switch therapy and what you might switch to (if necessary)?
In developing a long-term strategy for treating HIV disease and managing your health, it’s a good idea to think ahead and be prepared. Fortunately, many people are making strategic decisions about therapy that look years into the future instead of days or weeks. To do this, it requires a person to think even more seriously about how the therapies they start today will affect the options available to them later.

Consider what you might do in terms of treatment if your first option doesn't work, causes too many side effects or for other reasons doesn’t fit with your lifestyle. Again, being prepared and thinking about this before the need for a change arises gives you time to learn even more about your next choice and takes some of the anxiety away from facing a situation where you might need to consider switching to a new therapy regimen.

When to stop?
For the same reasons that it’s important to decide when to start therapy, it’s also important to consider when or if it’s ever appropriate for you to stop, for any length of time. How do you determine when a given therapy or approach just isn’t working for you? At what point do you say that the cost or potential risks associated with using the therapy isn’t worth the potential benefits of staying on it? Working with your doctor before you start therapy to develop some criteria around this, that you both feel comfortable with, is important.

In all of these areas you might come to decisions and agreements that change over time. Your expectations of a given therapy may change as you learn more about it and as new information becomes available. Changing your mind and re-thinking your strategies and approach is a healthy and normal part of evolving a decision-making process.

Power of the mind

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