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Is Your HIV Treatment Working? Warning Signs and False Alarms

Last Reviewed: May 29, 2013

The first few months after starting HIV treatment are pivotal in determining whether your first regimen will be successful. Yet if you are brand new to HIV/AIDS treatment, how can you know what success is? It can be hard to tell the difference between a warning sign that your regimen might not be right for you and a normal signal that your body is still adjusting to the medications.

No one wants to take medications that make them feel worse than before. It also seems pointless to take medication every day that isn't working right. It helps to pay close attention, communicate with your health care team, and be a part of every decision.

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How do you really know if your HIV treatment is working? There are three key things to keep track of: how much your viral load is dropping, how much your immune system is recovering, and how you're actually feeling.


Is My Viral Load Dropping Enough?

The Basics: The goal of HIV/AIDS treatment is to disrupt the replication of the virus so much that the amount circulating in your blood is as low as possible -- so low that the blood tests you'll use to keep track of your HIV will report it as "undetectable." No matter how high your viral load is when you start treatment, "undetectable" is where you want to get.

The pace of HIV viral load decline can vary considerably from person to person, and it's very much influenced by how high your viral load is at the start. More virus for HIV medications to attack often means more time to reach an undetectable level.

It's unlikely your health care provider will even start checking your viral load until you've been on your medications for at least a few weeks. Although checking earlier may give you a sense of the pace of the viral load drop, it's getting to undetectable that really matters, and that can take time.

Different Definitions of "Undetectable": What makes conversations about viral load testing even more confusing is that "undetectable" doesn't always mean the same thing. Different clinics use different tests analyzed by different laboratories, and each lab may have a different cut-off point for the detection of HIV in a sample of blood. So if your lab test has 50 copies/mL as the lowest detectable amount, but your friend's lab test detects viral loads as low as 20 copies/mL, what does it mean if your friend has detectable virus and you do not?

virus in the bloodstream

Obviously, less is better when it comes to HIV viral load. But we don't know precisely the significance of, let's say, 50 copies/mL versus 20 copies/mL. Measuring such tiny amounts of HIV in the blood is still tricky business, and there is even some question about how reliable those numbers are: If you were to repeat a viral load test, even with the same sample of blood in the same lab, the result would not necessarily be exactly the same.

The Mystery of "Blips": Even if you achieve an undetectable viral load (called "fully suppressed") and stay undetectable, it is possible you may experience a small rebound (to a viral load that's detectable but still very low, i.e., below 400 copies/mL). This is a viral load "blip."

There can be a variety of reasons for a blip (including lab variability or error), not all of which we completely understand. However, it does not mean the regimen has failed. Repeat testing will tell the story; if future tests show a three-fold increase or more in the amount of virus, then you and your provider may want to talk about switching to a different regimen.

The Bottom Line: Let's say you've been on your medications for several months, and what had been a consistent decline in your viral load has leveled out without reaching an undetectable level -- or, worse, your viral load is going back up. If this happens, you and your provider will want to figure out and address what might be slowing your treatment progress, and decide whether you need to switch regimens. The longer you stay on a combination that isn't fully suppressing the virus, the more risk there is of the virus becoming resistant to those medications, as well as other HIV medications you haven't even taken yet (called cross-resistance).

But when you're just starting out, as long as your viral load is generally moving toward undetectable, you're in good shape.

Is My Immune System Recovering Enough?

The Basics: As we just discussed, an effective antiretroviral regimen should suppress replication of HIV. That gives your immune system a break and allows it to recover. When it comes to measuring immune recovery, the conversation revolves around two major markers: your "absolute CD4 cell count" and your "CD4 percentage," or the proportion of your white blood cells that are CD4 cells.

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Depending on the person, the pace of your 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 a way to gauge the likelihood that you'll develop illnesses in the future.

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 a little more reliable than your CD4 count because, if your absolute number of CD4 cells/mL is down, it's often because the larger pool of white blood cells is also down. 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.

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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%.

The Bottom Line: Regardless of the pace or the exact number, you want to see your CD4 cell count go in one direction over time: up. You likely don't know what your normal count was long before you got HIV, and everyone is different, but more CD4 cells (and a higher CD4 percentage) are a good thing. If it seems like your CD4 numbers aren't budging much, or if repeated tests over time show that they're beginning to drop, talk to your health care team about why that might be.


How Am I Feeling?

The Basics: There are few certainties in HIV/AIDS 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 have more 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: Many 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 gets 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.

Look Into the IRIS: People who start treatment at low CD4 cell counts (particularly when it's below 200) might suddenly experience a whole array of symptoms: fever, swollen lymph nodes, congested breathing and other symptoms that you might feel if your body was reacting to a bacterial or viral infection.

In fact, that's likely exactly what's happening: What you're experiencing may well be Immune Reconstitution Inflammatory Syndrome (IRIS). IRIS is a sign that the medications you're taking are helping out the immune system, and as a result your body is now able to recognize and mount a response to invaders that have been taking advantage of your weakened state. Although IRIS might make you feel worse at first, once your recovering immune system fights off the infection you'll start to feel much, much better than before you started treatment.

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However, if you develop symptoms of IRIS, it also means your doctor should be involved. This is because extreme cases of IRIS can cause you to get very sick and sometimes require hospitalization, which will let your doctor provide close monitoring and support until you recover.

Watching the Horizon: After a while on treatment, you might find that you're experiencing a side effect you didn't notice before, or that bothers you now more than it used to. For instance, maybe you started taking Atripla and discovered over the course of several months that your sleep isn't that great or your mood has slipped.

There are also still plenty of unanswered questions about the long-term effects of HIV medications. We know that they are lifesavers in terms of preventing HIV from killing you; what we're still learning is what price you may have to pay for a much longer, generally healthier life. Be sure to stay in touch with your doctor about some of these potential long-term health issues, and use TheBody.com as a resource to stay educated about side effects and other problems that people with HIV get as they grow older.

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The Bottom Line: If you find yourself not feeling well days, weeks or months after you've started HIV treatment -- particularly if that feeling isn't going away or is getting worse -- the question quickly becomes, "Do I want to try to find ways to manage this symptom, because my regimen is working and I'm able to keep up with my meds every day? Or do I want to see what a new regimen may have to offer, both good and bad?" This is a very individual decision, one best made thoughtfully and carefully after discussion with your health care provider.

It can be nerve-wracking to start an antiretroviral regimen. Fortunately, the fear of what might happen is often worse than what actually happens. In fact, many people feel better after they start HIV treatment: They feel better physically because the medications are stopping the unchecked replication of HIV in your body and helping your immune system recover. And they feel better emotionally because, well, they feel better physically -- and because many of the fears they had about HIV treatment didn't come to pass.

Still, the key for anybody beginning treatment is to be aware of these potential warning signs, educate yourself about their causes and solutions, and talk openly with your health care provider about your concerns and your options. This will help ensure that your treatment remains on track no matter what obstacles might pop up in your way.




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