Starting HIV Treatment - New Guidelines and Questions

The United States Public Health Services (USPHS) regularly release guidelines for HIV treatment and related conditions. Obviously, these guidelines change as new drugs are approved, and new safety and success rate data (also called efficacy) become available for drugs and drug combinations that are already approved. The most recent what to take HIV treatment guidelines are also available as a PDF.

The guidelines are developed by the panel on Clinical Practices for Treatment of HIV Infection convened by the Department of Health and Developed by the DHHS Panel on Antiretroviral Guidelines for Adults and Adolescents – A Working Group of the Office of AIDS Research Advisory Council (OARAC). It is emphasized that concepts relevant to HIV management evolve rapidly. The Panel has a mechanism to update recommendations on a regular basis, and the most recent information is available on the AIDSinfo Web site at http://AIDSinfo.nih.gov

These new guidelines take into account that there are quite a few different combinations of drugs that you could take. If the preferred combinations don't suit you, alternative combinations are listed. Your doctor may want to prescribe a combination suited specifically to your medical history, viral resistance patterns, and ability to tolerate certain types of medications. In that case, you'll probably have a combination created by choosing amongst different pills based on your specific needs.

Anti-HIV Drugs

[Intelence] [Rescriptor] [Sustiva] [Sustiva and Truvada] [Viramune]
Non-nucleosides (Non-Nukes or NNRTIs) [Reyataz] [Prezista] [Lexiva] [Crixivan] [Kaletra] [Viracept 625] [Norvir] [Invirase] [Aptivus]
Protease Inhibitors

[Fuzeon] Entry Inhibitors

[Isentress] Integrase Inhibitors

[Isentress]CCR5 co-receptor inhibitors

[Ziagen] [Epzicom] [Trizivir][Videx EC][Emtriva][Truvada][Epivir][Combivir][Zerit][Viread][Retrovir]
Nucleoside/tides (NRTIs or nukes)


If you have recently been infected you should consider starting treatment right away, before the HIV virus starts killing off important parts of your immune system. Before starting HIV treatment (or changing one or all of the drugs you are taking) several factors must be looked at very carefully. Although a drug combination, or Anti-retroviral Therapy (ART), may be a preferred option, it may not be the best option for you based on one or more of these factors.

A Few Words from The Experienced

HIV treatment means finding a team of providers who can offer health care services, case management, supportive or mental health counseling, or assistance with things like food, housing, employment, legal issues, alcohol or substance use, or getting the medications you need. All of these issues could and often do affect the success of HIV treatment.

The best treatment options are those that are based on your individual needs and condition, including your committment and ability to stick with your choice. This is called adherence. It is as important to the success of any regimen as is drinking plenty of water, protecting yourself and others from exposure to HIV and other illnesses, and getting the right amount of sleep. Simply put, if you body does not get the right amount of water and sleep to process any medications, they might work less well, or not well at all.

Things to Consider

The things that you and your health care team need to consider should act as an ongoing framework for your HIV treatment. If your first treatment combination doesn't work or if you need to change, the same issues will need to be addressed, so plan for the future now to be prepared. For most people, a doctor or health care team will explain what your options are, and why. Other people will want to be a very active partner in researching and making treatment decisions. It's up to you.

If you chose to let your doctor deal with these decisions, you must follow his or her exact instructions. Your job will be to let them know everything that is going on, from small issues that bother you to big changes in your body. If it feels not right, let someone know. Keep an open line of communication. If that is a problem, it needs to be addressed. A case manager, or a counselor or a trusted friend could be a big help.

Here is a brief list of the issues that you need to address related to HIV treatment. Some people will need to look at each one carefully. Other people will be precribed a combination of meds and get on with their lives with no big complications - there are once or twice a day pills that work quite well for people who can access them. Then again, the same people might not start having issues until they have been on treatment for months. Comparing your progress with others may be interesting, but the most important thing to be concerned about is you and the following issues:

  • If you are recently infected or if you have symptoms of HIV disease (symptomatic) or if you have 350 or fewer CD4 cells - also referred to as T4 or T cells - you should seriously consider starting HIV treatment as soon as possible, especially if you are losing CD4 cells quickly or have a high HIV viral load ( measured by an HIV PCR).

  • Get a Drug Resistance test done along with other blood work, including tests for hepatitis. The resistance test lets you know what drugs will work best for you. It's not uncommon for a doctor to prescribe a combination of drugs for you to take while you are waiting for the results of these tests. Then he or she may instruct you that you only need to take some of those drugs. Otherwise, they will wait for the results of the CD4 panel, the heptitis panel, the CBC, and resistance tests to come back first.

  • If your first treatment regimen can't be tolerated or just doesn't work, what is your second line of therapy? Make sure to have your second treatment regimen ready to go, just in case. Odds are that you won't need it for a while, but your second line of therapy determines what you will take first. And just in case, have your third regimen ready as wel. By the time you need it there will probably be several new drugs approved that you will want to consider

  • Are you sexually active? If you do not have hepatitis A or B, get vaccinated. There are also other vaccinations you should get as well. Treat any sexually transmitted diseases (STD), and don't have unsafe sex. Just because you have HIV doesn't mean that you won't get infected with sexually transmitted diseases. You could also give someone HIV along with an STD. Are you using birth control or condoms to prevent a pregnancy? Some drugs can actually harm an unborn fetus.

  • What other drugs are you taking for other conditions? If, for example, you have to take medications for your heart or kidneys, will adding an HIV treatment regimen affect the amounts of any of the drugs you take now or just started?

    • Do you have diabetes?
    • How about chronic hepatitis B or C ?
    • Do you have high blood fats or liver problems?
    • Are your heart and kidneys in good shape?

    Depending on the answers to these questions, you may have to take a specific HIV treatment regimen for your condition.

  • Are you ready to start treatment?
    • Are you willing to commit to taking your medications as they are prescribed to prevent resistance from developing?
    • Is your schedule set up so that you can take your meds at the same time every day or does that need to be worked out?
    • Is your treatment combination - maybe one pill once a day at this point - convenient for you or do you need help remebering to take all your meds?
    • Based on the common or expected side effects of a treatment combination, would it be better for you to take a different treatment regimen that required two pills twice a day?
    • Will the side effects of the treatment regimen you choose to take go away in a week or two, or remain constant?
    • Are there any side effects or conditions that you are unable to deal with or unwilling to accept?
    • Are you aware of the consequences of stopping your chosen treatment regimen once you start?

  • HIV treatment means finding a team of providers who can offer health care services, case management, supportive or mental health counseling, or assistance with things like food, housing, employment, legal issues, alcohol or substance use, or getting the medications you need. All of these issues could and often do affect the success of HIV treatment. Do you need help setting this up? The Network and other community organizations and agencies offer assistance in a confidential manner. Maybe this should be the first thing you do before going any further with HIV treatment.

What you Should Avoid

Peripheral neuropathy usually shows up as sharp burning pain sensations in the hands and/or legs. Early signs are a burning sensation or a numbness, like a deep pain that may come and go but always affects the same spot. Early symptoms of peripheral neuropathy are a tingling sensation in the fingertips, feet or legs. This side effect can sometimes be eliminated by using a lower dose, but then it would be better just to discuss the situation and resolve it properly with your doctor or health care team

Peripheral neuropathy is much more common with the use of Zerit and Retrovir. Other rare but potential potential side effects of these and other drugs are pancreatitis, elevated liver function tests and bone marrow suppression<. Symptoms of pancreatitis can be pains in the stomach area that go through to your back, and you should notify your doctor immediately if these symptoms occur. Your bloodwork should also be routinely checked for any signs of pancreatitis. Liver function should be closely monitored if you are taking Zerit. Bone marrow suppression is monitored through your blood work. Bone marrow suppression does not occur as frequently with Zerit as with Retrovir.

Side Effects

One of the side effects linked to long term use of anti-HIV drugs has been given the name lipodystrophy. This side effect shows up as loss of tissue from the face, giving the cheekbones a "sunken" look. There can also be a build up of fat around the waist causing a pot belly. Fat levels in the blood (cholesterol and triglycerides) may also increase. At first, this side effect was thought to be caused by the class of anti-HIV drugs called protease inhibitors. However, recent research suggests that some symptoms of lipodystrophy may be related to other anti-HIV drugs. Although it is not yet certain, some researchers have found that long term use of Zerit may be a risk factor for some of the symptoms of lipodystrophy, such as loss of tissue from the face. One small study found some improvement in these symptoms when people taking Zerit as part of their combination switched to an alternative drug.

A set of rare but serious side effects of nucleoside analog anti-HIV drugs is called lactic acidosis and severe hepatomegaly with steatosis (an enlarged fatty liver). Women, especially those who are oveweight, are particularly at risk. This set of side effects is probably the result of mitochondrial toxicity. Mitochondria are cell's power organs that supply the energy needed for normal cell growth. Anti-HIV nucleoside analogs impair the function of mitochondria. This can lead to increased acid levels in the blood, and an enlarged fatty liver. The symptoms are severe nausea, shortness of breath and vomiting that does not get better. If you are taking anti-HIV drugs and experience these symptoms, tell your provider immediately.

How to Get Treatments and Care

There are different ways to access these drugs. Private insurance, public entitlement programs like Medicaid and Medicare Part D, and other state or industry sponsored programs such as ADAP, Expanded Access Programs, and Patient Assistance Programs. Contact The Network at network@atdn.org for info on resources in your state.

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Last modified: 4/12/2008
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