About Monitoring HIV Disease
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The following is a list of questions to ask your doctor About Monitoring HIV Disease  as well as tips for preparing for these conversations.

What is my stage of disease?

Doctors and researchers classify HIV disease according to a number of different factors, including laboratory and physical exam results and the presence or absence of symptoms. There are four stages: asymptomatic, early, intermediate and late stage (AIDS).

How you can prepare for this discussion

  • Keep detailed records of any recent infections, vaccines and illnesses
  • Keep records of all your laboratory test and procedure results
  • Note any new symptoms you have experienced since your diagnosis of HIV
  • Keep a log of all your medications and treatments
  • Note the date you were diagnosed with HIV

What lab tests will be used to monitor the course of my disease?

Your doctor will want to perform tests and procedures before you start therapy and periodically to monitor the course of your disease. They will be used to guide decisions for starting antiretroviral therapy, selecting a combination of medicines, and to see if the medicines are working. These tests will also monitor how well your immune system is functioning, the level of virus in your blood (viral load), and if you are developing any side effects from the medicines you are taking. In addition, your doctor may do tests to see the genetic material of the HIV in your body and whether particular medicines will be effective.

Results of laboratory tests will be compared to your prior results. Examples of blood tests that may be done include the following:

  • A complete blood count (CBC)-a measure of white blood cells, red blood cells and platelets
  • Blood chemistries-a measure of chemicals in your blood
  • Kidney and liver function tests
  • Cholesterol profile
  • Viral load-a measure of the level of virus in your blood
  • T lymphocyte cell counts (CD4 and CD8 T-cells)-a measure how your immune system is functioning
Other tests may be done periodically to see if you have a type of infection related to your HIV disease (opportunistic infection). Your doctor may also perform tests to see if the virus in your body has developed resistance to the medications you are taking (see question 4 below).

How you can prepare for this discussion

  • Have your tests performed at the same lab each time
  • Ask your doctor if it is okay for you to eat prior to taking a blood test (some tests require that you have an empty stomach to ensure that the results are accurate)
  • Keep a record of all laboratory tests and procedure results

What are some reasons to begin antiretroviral therapy treatment?

  • The decision to begin HIV therapy is based on many factors. Recommendations for starting therapy are based on the following factors:
  • Stage of your disease
  • Laboratory test results (such as your viral load and T-cells levels)
  • Physical exam results
  • Your willingness to begin therapy
  • Your ability to follow treatment plans
The decision to begin therapy must be made carefully since once you begin therapy, you may need to stay on it for the rest of your life.

You should ask your doctor about how the medicines will help your immune system; the potential side effects of the medications; if the drugs will interact with other medications that you are taking (drug-drug interactions); ways to maintain a good quality of life while taking your medications; and future medication options. Using all of this information will enable you to make a more informed decision about whether or not to start therapy.

How you can prepare for this discussion

  • List any drug allergies
  • List any side effects of medication you have experienced in the past

What are some reasons to change the antiretroviral therapy that I am currently taking?

Each antiretroviral regimen has a different set of rules that you need to strictly observe when taking the medicines. These include the number of pills of each medicine you need to take per day, when you need to take them and whether you can take the pills with food or if you need to have an empty stomach. Some of the regimens may be more complicated than others. Your doctor will try to put together a regimen that is as simple as possible. Many regimens have medicines that can all be taken twice a day and there are some regimens where the medicines can all be taken once a day. If you are on a complicated regimen that you find difficult to maintain, your doctor may suggest changing to a more simplified regimen.

Another reason to change therapies is if the regimen you are taking is not working. The goal of all antiretroviral therapy is to kill the HIV virus and prevent it from replicating. Your doctor may perform tests periodically to see if the virus in your blood is still able to replicate even though you are taking your medicines. This is known as viral resistance, since the virus is resistant to the medicine and is still replicating.

Your doctor can do tests (such as genotyping and phenotyping) that determine which of the medicines is causing the resistance. Based on the results of these tests, the doctor may suggest changing to a different regimen.

How you can prepare for this discussion

  • Keep a record of your dietary habits
  • Make note of times when you were unable to take the antiretroviral medicines you were prescribed
  • Keep a record of all laboratory tests and procedure results

What will happen if I develop symptoms of HIV disease?

Some people with HIV disease can develop symptoms of the disease. Many of these symptoms are from opportunistic infections. Some examples of opportunistic infections include PCP pneumonia, tuberculosis (outside of the lung) and invasive cervical cancer. Treatments used for these conditions do not fight the HIV itself. However, if you develop any of these problems and you are not already on an antiretroviral regimen, your doctor may suggest that you begin therapy.

How you can prepare for this discussion

  • Note any new symptoms you have experienced since your diagnosis of HIV
  • Keep detailed records of any recent infections, vaccines and illnesses

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