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Monitoring Your Health

Part of A Practical Guide to HIV Drug Treatment for People Living With HIV

2011

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In a Capsule

  • Regular visits to your doctor are important for monitoring your health.
  • You and your doctor will likely discuss any new symptoms or problems you may be experiencing. From time to time, you will also have a physical exam.
  • Your doctor will order blood tests to monitor your CD4 count, viral load and overall health.
  • Your CD4 count gauges the strength of your immune system and helps determine the best time to start treatment.
  • Your viral load measures the amount of HIV in your blood and is used to determine whether your treatment is working.

As a person living with HIV, you will likely have regular visits with your doctor to monitor your health. When you meet with your doctor, you will be able to discuss any new symptoms or problems you may be experiencing, and your doctor may do a physical exam to follow up on specific issues. You will also get blood drawn at the lab every couple of months. Your blood will be tested for several things. Two of the most important blood tests will be done to measure your CD4 count and your viral load. Many other routine tests can spot potential health issues even if there are no noticeable symptoms.


Monitoring Symptoms

Every time you see your doctor, tell him or her how you have been feeling, especially if you have noticed any new or unusual symptoms. This could include fever or night sweats, diarrhea or upset stomach, headaches, rashes, a persistent cough, trouble breathing or anything that seems unusual. Your doctor will probably follow up with some questions. Take your time and answer honestly. It can be difficult to judge what's worth mentioning, but err on the side of caution. Not every little ache and pain is serious, but let your doctor know about anything persistent or anything that seems out of the ordinary. Better to spend an extra minute or two than to miss something important.

Any symptoms you're noticing may or may not be HIV-related -- but the first step is to get them out in the open so you can find out what's causing them. This also includes changes in your mood, mental health and behaviour: if you've been feeling down or depressed or acting in ways you don't normally, say so.


CD4 Count

My GP [general practitioner] is a compassionate doctor who spends extra time listening and talking to me, as he knows I've struggled with depression. He's there to help and support me.

-- Randy

Your CD4 count is the single most important measure of how strong your immune system is -- that is, how well you are able to fight off infections. This, in turn, tells you whether you should start treatment sooner or later.

Generally, you should be getting your CD4 count checked every three to six months. It may make sense to check it more often if you've been stressed or sick. CD4 counts are measured in cells per cubic millimetre (cells/mm3 -- a cubic millimetre is about the size of a pinhead). CD4 counts generally drop as HIV does more damage to your immune system. If your CD4 count falls too low, the risk of serious opportunistic infections increases. However, even lower-than-normal counts may still be "high enough" -- that is, high enough to keep you healthy, without significant danger of serious infections.

  • A normal CD4 count in healthy HIV-negative people is generally between 500 and 1,500 cells, depending on the lab where the blood is assessed. However, there is a lot of variation -- even a "normal" count could be above or below this range.
  • With CD4 counts above 500 cells, your immune system is still strong enough to fight off most infections. (In other words, try not to stress too much if your count is below "normal" -- that is, below that of an HIV-negative person. The important question: is it high enough to keep you healthy?)
  • CD4 counts below 500 cells deserve attention: they indicate that your immune system is becoming weakened. At the high end of this range, the risk of infection is still relatively small, but the risk becomes greater with lower counts.
  • A CD4 count below 200 cells indicates that your immune system is very weak and that you are at risk of serious life-threatening infections.

In most HIV-positive people who are not on treatment, the CD4 count declines by an average of 50 to 100 cells each year. Declines in CD4 counts merit more attention if they fall faster than they have in the past or if they put you at greater risk of illness. As counts fall farther below 500 cells, the need to start HIV treatment becomes more pressing.


CD4 Percentage

CD4

The number of CD4 cells can also be reported as a percentage of the total number of lymphocytes. The normal range is from 32% to 50%.

While your CD4 count can fluctuate a fair amount, the CD4 percentage does not normally vary as much. Looking at both of these numbers may give you and your doctor a better picture of the state of your immune system. If your absolute CD4 count takes a dip, but your CD4 percentage stays the same, you may not need to be as concerned about the decrease in count -- it's probably due to an overall variation in your white blood cells rather than an HIV-related drop in your CD4 cells.

If, however, your CD4 count and percentage both decline at the same time, that's probably worthy of attention. If your CD4 percentage falls below 20%, you may be at risk for Pneumocystis pneumonia (PCP). If your CD4 percentage falls below 15%, you are probably at risk for other opportunistic infections as well.


Viral Load

My CD4 count was around 1,200 for years. The first drop was about a year ago, to about 300. My viral load has always been around 120,000, but it spiraled up to 500,000. Last June I started [antiretroviral medications] and it's been great. I've had no side effects.

-- Maggie

Your viral load is the amount of HIV in your blood. Viral load tests measure the amount of HIV in a sample of blood. The results are reported as the number of copies of HIV genetic material (called RNA) in a millilitre of blood (copies/ml -- a millilitre is about the size of a small bean). The standard tests in Canada can measure levels as low as 40 to 50 copies/ml. Below this level, your virus is considered undetectable. (There are more sensitive viral load tests, but these are used only in specialized laboratories and in some clinical trials.) Without treatment, a person's viral load can be as high as millions of copies/ml.

An "undetectable" viral load does not mean that HIV has been wiped out. It only means that the amount of HIV in your blood is too low to measure using routinely available tests. If you stop taking your treatment or if the HIV in your body becomes resistant to your antiretroviral drugs, your viral load will once again become detectable (that is, greater than 40 or 50 copies/ml).

If you are not on HIV treatment, the results of your viral load test will give you a rough indication of how fast you can expect your CD4 count to decline. In general, CD4 counts tend to decline faster in individuals with higher viral loads who are not on HIV treatment, and they stay stable longer in people with lower viral loads. However, this varies among individuals.

If you are on HIV treatment, your viral load is the most important measure of whether or not your treatment is working. The main goal of treatment is to reach an undetectable viral load within three to six months of starting treatment (although it might take longer if your viral load was very high to begin with). After your viral load becomes undetectable, the goal is to keep it that way.

If you are on treatment and your previously undetectable viral load becomes measurable, this indicates that the drug combination you are taking may no longer be fully suppressing the HIV. This may be a temporary "blip" and your viral load may go back to being undetectable the next time you test it (especially if it only rose to a very low level). These blips can occur every now and then in people on successful treatment, especially after vaccinations and temporary infections like the flu. However, if you are on treatment and two or more tests in a row show a detectable viral load, then you and your doctor need to figure out why this might be happening. It could be due to any of the following factors:

  • your body not absorbing the drugs properly
  • not taking your drugs as directed
  • your virus being resistant to one or more of the drugs you are taking
  • interactions between antiretroviral drugs and other medicines, supplements and substances you are taking

It may be time to consider a treatment change. See "Changing Treatment" for a full discussion of how to handle such "treatment failure."

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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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