Updated February 2012
Treatment with HIV drugs can improve quality of life and help people living with HIV (HIV+) stay healthier longer. But starting treatment is a big decision. In order to get the most benefit from HIV drugs, they must be used just the way they are prescribed. Taking your treatment correctly is as important as which drugs you and your health care provider choose. So before you get started, make sure you are ready to commit to taking your HIV drugs the right way, every day for your own health! This takes a combination of the right health care provider, enough knowledge about HIV, and a positive attitude.
You and your health care provider are a team working together to make the best treatment decisions for you. Ask yourself a few questions: Do I have confidence in my provider? Can I be totally honest with him or her? Is he or she available when I have questions? Does he or she take my concerns seriously? If so, great!
If not, try to make changes. Write down the questions you would like to ask your health care provider before you go to visits. It is important to answer your provider’s questions with the truth, not with what you think she or he wants to hear. If that still does not work, it may be time to look for another provider.
It is also wise to have a health care provider who is an HIV specialist. Health care providers who devote most of their time to HIV are best able to manage this complicated condition. Helpful suggestions for HIV specialists near you can come from friends, ASOs (AIDS Service Organizations), or by checking with the American Academy of HIV Medicine (AAHIVM). To find an ASO in your area, click here or look at the AAHIVM’s Referral Link.
HIV is a virus that infects and destroys CD4 cells. CD4 cells are part of the body’s immune system. The immune system protects the body from germs. When the immune system loses too many CD4 cells, it becomes weak and is unable to fight off germs. At this point, HIV+ people are at risk of getting opportunistic infections (OIs) that can cause serious illness or death.
Scientists have developed drugs that stop HIV from making copies of itself (multiplying). These drugs are grouped into classes. Each class of drugs works to stop HIV at a certain point in its life cycle. So far there are five classes of drugs:
- Entry inhibitors (includes fusion inhibitors and CCR5 antagonists)
- Integrase inhibitors
- Nucleoside/nucleotide reverse transcriptase inhibitors (“nukes” or NRTIs)
- Non-nucleoside reverse transcriptase inhibitors (“non-nukes” or NNRTIs)
- Protease inhibitors (PIs)
HIV drugs are always used in combination to attack the virus at different points in its life cycle. This usually means using drugs from at least two different classes. Combining HIV drugs is the best way to reduce the amount of HIV in your blood ( viral load).
Baseline Blood Tests
Before you start HIV treatment, your health care provider should have you take a number of blood tests. These are your original, or baseline tests. Future test results will be compared to your baseline results to see how you are doing and how well your treatment is working.
- CD4 cell (T-cell) count: The CD4 count checks the strength of your immune system. After you start HIV treatment, you should see your CD4 count go up. Your CD4 count should be checked every 3-4 months, if possible.
- Viral load test: The viral load test measures the amount of HIV in your blood. After you start HIV treatment, you should see your viral load go down. Your viral load should be checked about a month after you start or change HIV drugs. After that, it should be checked every 3-4 months.
- Resistance test: The resistance test helps determine which drugs are likely to work against the strain of HIV you have. Experts recommend that everyone get a resistance test before starting or changing HIV treatments, even if you do not plan to start HIV treatment for a while.
- Other tests to check your overall health: These include complete blood count (CBC), chemistry screen, lipid profile, liver tests, and glucose (blood sugar). Your health care provider should talk with you about how often these tests need to be done.
- To get your viral load as low as possible for as long as possible
- To preserve or improve the health of your immune system by increasing your CD4 cells
- To improve your quality of life and reduce illness
The US government has put together a list of guidelines to help people decide when to start treatment:
- Anyone with a CD4 count less than 500 should start HIV treatment
- If you are in one or more of the following situations, you should also
start HIV treatment, no matter what your CD4 count:
- You have or had symptoms of AIDS (such as OIs)
- You are pregnant
- You have HIV-related kidney disease
- You need treatment for hepatitis B virus (HBV)
Some experts feel that it is a good idea to start treatment earlier – with a CD4 count above 500 and no symptoms. There are risks and benefits to doing this.
Benefits of Starting Early:
- Maintaining a higher CD4 cell count
- Preventing further damage to the immune system
- Decreasing risk for HIV-related and non-HIV-related health problems
- Reducing your risk of transmitting HIV to others
Risks of Starting Early:
- Experiencing drug-related side effects, including possible long-term side effects not yet known
- Developing drug resistance (see below), which can limit future treatment options
- Having to be on treatment for a longer time
When considering when to start treatment, you and your provider will also look at your overall health, and your readiness to start and stick to lifelong treatment. Talk to your health care provider to make sure you understand the importance of adherence (see below) and to make a plan to address any barriers to adherence before starting.
Whenever you start treatment, you need to take your drugs on schedule and exactly as prescribed. This is called adherence. In order to get the maximum benefit from HIV therapy, good adherence is required. This is because HIV drugs need to be kept at a certain level in your body to fight the virus. If the drug level falls, HIV may have a chance to fight back. Skipping doses, not taking the drugs on time, and not following food requirements can all cause your drugs to be less effective or to stop working altogether.
After starting HIV drugs, you should see your viral load decrease and your CD4 cells increase. Over time, however, some people see their viral load increase, even though they are still taking HIV drugs.
When a drug is no longer able to fight HIV effectively, we say that HIV has become "resistant" to that drug. If you develop resistance, you will likely have to change some of the drugs in your regimen. If your viral load goes up while you are still taking your HIV drug regimen, your health care provider should offer you a resistance test to find out which drugs are not working and to help choose ones that will. For some people with resistance to many HIV drugs, it may be difficult to find a new combination.
The best way to fight resistance is to be adherent to your drug regimen.
If you decide the time is right to start treatment, try to have a good attitude going in. It is important to believe that:
- starting treatment is the right decision for you
- the HIV medications will help you fight the virus
- you can take your medications the right way
It may also help to get in touch with the reason you are starting treatment – to keep yourself in good health, whether for your own sake or for the good of your family.
Whatever decision you make, do not go it alone. Put together a support system that may include your health care provider, social workers, case managers, family, or friends. You may also consider joining a support group of other HIV+ people.
The more you think and talk about your decision, the better the outcome. Whatever you decide to do, keep going to your health care provider for regular check ups and blood work.