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Is Your HIV Treatment Working? Warning Signs and False Alarms

Last Reviewed: February 3, 2017

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Is My Immune System Recovering Enough?

The Basics

Remember that HIV infects and kills an important part of our immune system called CD4 cells. As we just discussed, an effective antiretroviral regimen should prevent replication of HIV and immune injury. That gives your immune system a break from HIV and allows it to stay healthy (if your CD4 levels are normal) or recover (if your CD4 levels have already been lowered). When it comes to measuring immune recovery, the conversation revolves around two major laboratory markers: your "absolute CD4 cell count" and your "CD4 percentage," or the proportion of your white blood cells that are CD4 cells.

Depending on the person, the pace of a rise in CD4 cells can be amazingly fast, frustratingly slow or somewhere in between. People who begin treatment at a low CD4 cell count (below 200) often have a steeper hill to climb, and depending on how weak their immune system is to begin with, it may take longer to climb it. Other people might see a rise and then a leveling out, then see another rise after a long time on treatment.

The main measure of your health, of course, is whether you get sick any more often (or with more severity) than an HIV-negative person. But, we can use CD4 count and CD4 percentage as ways to gauge the likelihood that you'll develop illnesses in the future.


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A Tricky Measuring Tool

The problem with obsessing about your CD4 cell count is that it can mislead you. Getting over a cold? Stressed out? Recently vaccinated? Getting your blood drawn at a different time of day than usual? Any of these things and more can influence the number you'll get back from the lab.

Your CD4 percentage is less variable than your CD4 count because, if your absolute number of CD4 cells/mL is down, it's sometimes because the larger pool of white blood cells is also down. CD4 numbers can fluctuate a lot, even in healthy people. A significant change in CD4 is considered a 30% change in absolute count or three percentage points. This is why knowing the percentage of white blood cells that are CD4 cells can be more useful: It can help distinguish a real change from one that looks like a big deal but isn't.

Another thing that can complicate setting a specific CD4 number as a goal for HIV treatment is that everybody is different. A "normal" CD4 count for an HIV-negative person can be anywhere between 500 and 1500, and a "normal" CD4 percentage can vary from 30% to 60%.

While it is understandable why people worry about their "numbers," if your viral load is suppressed and CD4 values have been normal for more than two years, as long as you stay adherent to treatment, you no longer need to worry about the numbers. Current U.S. treatment guidelines tell us that monitoring the CD4 state is no longer important because your immune system is normal.


The Bottom Line

HIV treatments work to allow your immune system to recover. You likely don't know what your normal count was long before you acquired HIV, and everyone is different, but in general more CD4 cells (and a higher CD4 percentage) are a good thing. Talk to your health care provider about what your test results mean. If you've maintained viral suppression and your CD4 numbers are in the normal range, you can take a deep breath and relax -- you might even not need to worry about CD4s in the future. If your counts remain low, be patient because some people do take longer to recover than others.


How Am I Feeling?

The Basics

There are few certainties in HIV treatment, but one is that you can't tell what your viral load or CD4 count is by how you feel. Only those blood tests you take can tell you for sure. However, how you feel can tell you a lot about a lot.

Every medication in the world has potential side effects and toxicities. Some meds are more likely to cause side effects than others, and some may be more likely in some people than others. It's important to take note of changes in the way you feel after you start treatment and beyond -- both physically and mentally.


In the Beginning

With today's medications, most people don't notice much of anything when they start treatment. Others have a minor side effect or two that will dissipate over the first few weeks. Still others have severe side effects that can make daily life harder; they may go away after a few weeks, or (rarely) they may persist.

If you get a new symptom after starting treatment that becomes worse or doesn't go away, it's important to bring it to your doctor's attention. There might be blood tests to run to see how your liver or kidneys are doing with the medications, and the two of you can hatch a plan forward. If the symptoms are related to one of your medications, switching to a different medication should alleviate the side effect and any health risks.

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