Making Your Treatment Work Long-Term
Part of A Practical Guide to HIV Drug Treatment for People Living With HIV
How to Keep Your Treatment Working ... and Why You Don't Want It to Fail
Regardless of the particular drugs you're taking, your drugs will only work when you take them. Duh, you say, but remembering to take your pills at the right times every day isn't always easy. And sticking to your pill-taking schedule is very important because these drugs leave the body very quickly. You need to have a certain amount of antiretroviral drugs in your blood to keep the virus suppressed. The goal of your pill-taking schedule is to ensure that the drug levels in your blood stay above that level. Missing doses leads to drug levels that drop too low to control the virus.
Worse yet, those low drug levels can lead to drug resistance. (We talk about how this can happen in Appendix E.) Bottom line: If you develop resistance to a drug, the drug won't work for you again -- ever. It's possible that you and your doctor will be able to find something else, but it's better to keep your current treatment working than it is to burn through your options.
Your doctor and pharmacist may have practical tips to help you adhere to your pill-taking schedule, so be sure to discuss this with them before starting your treatment. Here are a few tips and tricks that some people have found useful:
Talk to your doctor and find a regimen that works for your schedule. If you can't find a regimen that suits your lifestyle, there will always be adherence problems.
If you are having trouble taking your drugs as they were prescribed, don't be afraid to get help. Or maybe you're dealing with depression or substance use -- issues that will affect more than just your adherence to your HIV treatment. It's important to acknowledge and deal with those issues as well.
If all the tricks in the world don't help you stick to your pilltaking schedule, you and your doctor may need to consider switching to a new combination. It will be important to figure out what the problem was the first time around, so it doesn't get repeated. For example:
You may sometimes feel you're being lectured about adherence. Missing an occasional dose is not the end of the world, so don't panic if you fall asleep too early, get caught at work without a dose, or just plain forget once in a while. Do the best you can: you'll keep your drug combination working as long as possible, and do yourself the most good in the long run.
You're taking great pains to make sure your treatment works as planned. You don't want to find that it has failed despite your best efforts and near-perfect adherence. This can sometimes happen when one drug you're taking has an unintended effect on another. Such effects, called drug interactions, can occur 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 the drug in the body, which might improve its efficacy but could 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 that case, the second drug's effectiveness may be diminished. If the affected drug is an antiretroviral medication, this can lead to viral resistance (see Appendix E).
Interactions can also affect the likelihood of side effects. If two drugs tend to cause the same type of side effect, using them together may increase the chances that a serious side effect will occur. For example, a couple of older drugs -- ddI and d4T -- have a tendency to cause peripheral neuropathy (nerve damage that affects the hands and feet). Combining these drugs increases a person's risk of neuropathy, so ddI and d4T should not be used in the same combination. (Fortunately, these two drugs are rarely prescribed in Canada, alone or together, since many more tolerable drugs are now available.)
Drug interactions are not always obvious. They can take various forms: some occur immediately after you first combine the drugs, and others do not cause any noticeable problem for weeks or longer.
There are no foolproof ways to prevent all possible drug interactions. Most studies have only looked at the interactions between two drugs at a time, and many people take far more than that. Add the possibility of interactions between multiple drugs and foods and herbs and you get the picture -- it's complicated! However, there are several steps you can take to try to ensure that it is safe to combine all the things you're taking:
In some cases, there are drugs that absolutely cannot be used together and the only solution is to stop taking one of them. In other cases, it may be possible to use certain drugs together provided you make certain adjustments (for example, change the time when you take them).
I decided to stop taking meds altogether. I told my doctor and he advised me not to, but I wanted some life back. I eventually realized that if I didn't take my meds, I would die. It took me three months to decide that I wanted to live, and I went back on meds.
To put it plainly: to the best of our knowledge, HIV treatment is a lifelong necessity. This is because HIV can stay inside infected cells of the body for a very long time. It only takes a few infected cells to restart the whole process of HIV replication once treatment is stopped -- just as it only takes a few remaining coals to restart a fire that you had "almost" put out.
What about taking breaks? It's not hard to think of the advantages -- fewer pills, lower cost, fewer side effects and a general break from the constant pill-taking. Some people have tried taking "drug holidays" -- occasional breaks from their treatment. We know that such drug holidays are not a good idea, due to the risk of drug resistance (see Appendix E).
Several large clinical trials have looked at the outcomes of planned or "structured" treatment interruptions, in which people went off their antiretroviral drugs for a specific length of time or based on their CD4 counts. The idea was that as long as CD4 counts were above a certain level, it might be safe to go off treatment without becoming ill. Unfortunately, and to many people's surprise, these treatment interruptions proved to be more harmful than helpful for many people living with HIV. In one large clinical trial, people who interrupted their treatment were nearly three times more likely to die or develop serious infections than people who stayed on treatment continuously. The people who took breaks from their treatment were more likely to experience many different kinds of serious health problems, including cancer, life-threatening infections, heart attack, stroke, kidney damage and liver damage.
While treatment interruptions may not necessarily be harmful for everyone on treatment -- for instance, they may be relatively safe for people with higher CD4 counts -- they are generally not recommended due to the possible risks. Anyone considering an interruption in their treatment should discuss the issue with their doctor very carefully before stopping any of their medications. A careful plan of how to stop all the drugs in your combination is needed to ensure that drug resistance does not develop.
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This article was provided by Canadian AIDS Treatment Information Exchange. Visit CATIE's Web site to find out more about their activities, publications and services.
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