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When to Start

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

2011

In a Capsule

  • To decide when the best time is for you to start treatment, you and your doctor will need to consider your CD4 count and your readiness to start, among other factors.
  • People who have very low CD4 counts or have already had any serious HIV-related illness should start treatment as soon as possible.
  • People who have had other conditions that put them at risk should start treatment.
  • Pregnant women should start treatment to reduce the risk of HIV being transmitted to their baby.
  • People with higher CD4 counts can monitor their counts and periodically weigh the benefits and challenges of starting treatment.

Almost everyone with HIV has to start treatment at some point. Deciding on the best time to start involves several factors, including the strength of your immune system, as indicated by your CD4 count. It also depends on other medical conditions or factors in your life, and especially on your readiness to start treatment. Starting treatment is a long-term commitment. In working through this important decision, you will want to factor in both the benefits and challenges of treatment.

Benefits: HIV treatment stops the replication of HIV, which decreases your viral load and allows your immune system to maintain or rebuild itself. A stronger immune system can help keep you healthy and better able to fight off infections. Many people report that after starting treatment, many of their nagging health problems -- like tiredness or ongoing skin rashes -- were resolved. Starting treatment made them feel healthier. There is also a growing body of evidence that treatment can help stave off some of the long-term problems that affect people with untreated HIV disease -- like heart attacks, cancer, and liver and kidney problems.

Challenges: The decision to start treatment means a commitment to the challenges, inconveniences and possible side effects of taking pills on a regular and ongoing basis. It's important to take antiretroviral medications as directed and to miss as few doses as you possibly can. Too many missed doses, and your treatment can stop working permanently. Antiretroviral drugs can also cause side effects and long-term toxicities, which can range from minor to severe. In the best cases, people have very few problems with their treatment. Many others have either manageable side effects or side effects that go away on their own in time. However, some people experience more serious side effects. Fortunately, treatments have improved considerably since the first antiretroviral drugs. Current combinations have fewer and more tolerable side effects, and require fewer pills and less-frequent dosing.

One thing is for certain: when to start treatment is your decision. No matter what your situation, your feelings and your questions about treatment, discuss them with your doctor and make sure the answers make sense to you. At the end of the day, you're the one who has to take the pills, and you shouldn't start until you're ready to make the commitment to succeed.


Some People Need to Start as Soon as Possible

People in the following groups should begin treatment as soon as possible. For some people, this may mean beginning treatment right after their HIV diagnosis.

  • Most people who have had a serious HIV-related illness should start taking treatment as soon as possible. Any active disease is likely to worsen if left untreated. In cases of serious illness, starting HIV treatment could be life-saving. Even if the immune system has been severely damaged, it can usually rebuild itself, though this may take time.
  • People with a CD4 count below 200 cells should also start treatment as soon as possible. If your CD4 count is below 200 cells, you are at immediate risk of serious HIV-related illness, even if you are feeling perfectly fine. At this stage, serious illnesses could develop at any time. Beginning treatment immediately can increase your CD4 count and decrease this risk. In addition to taking antiretroviral drugs, you may also need to start taking medications to lower the risk of getting certain infections; you'll be able to stop these medications (but not the antiretroviral drugs) once your CD4 count has risen to safer levels.
  • Pregnant women should start taking antiretroviral drugs to minimize the risk of passing HIV to their fetus and, later, to their baby. Your doctor may recommend specific anti-HIV medications if you are pregnant or planning to become pregnant. After giving birth, you and your doctor will decide whether or not you should continue treatment for your own health.


If Possible, Everyone Should Start Treatment Before Their CD4 Counts Fall Below 350 Cells

The lower your CD4 count, the more seriously you should think about starting treatment. Experts agree that people with a CD4 count below 350 cells should start treatment. If your CD4 count is below 200 cells, you are at increased risk of life-threatening infections and should start HIV treatment immediately. If your CD4 count is above 200 cells but below 350 cells, leaving HIV untreated still puts you at a significantly higher risk of serious illness and death. This has been confirmed by several studies. If your CD4 count is in this range, your doctor will likely suggest you start treatment.

My doctor really wanted me to take the medications, but I didn't want to start until I was really sick. I'm not a pill person. I was worried about taking them because I have a few friends who have gotten sick from side effects. But my CD4 count was getting low, so I agreed to start meds a little while ago. I feel fantastic. Now, with the meds, I have more energy.

-- Deanna


For CD4 Counts Above 350 Cells, You Should Consider Starting Treatment

HIV-positive people with CD4 counts higher than 350 cells should consider starting treatment if they:

  • are older than 55 years
  • are at high risk of cardiovascular disease
  • are thinking about becoming pregnant
  • have a rapidly falling CD4 count (dropping by more than 100 cells per year)
  • have a high viral load (usually 100,000 copies or more)
  • are co-infected with hepatitis B, hepatitis C or tuberculosis
  • have suffered kidney damage due to HIV

People in any of these situations may benefit from starting treatment rather than waiting until their CD4 counts decline further.

If you do not have any of the conditions listed above and your CD4 counts are above 350 cells, you are not at immediate danger of significant problems due to your HIV infection. However, the higher your CD4 count, the better your body can fight infections. Indeed, CD4 counts above 500 cells are comparable to CD4 counts found in HIV-negative people, so many people with HIV who have CD4 counts above 500 cells decide to delay treatment and continue to monitor their health.

The closer your CD4 count gets to 350 cells, the more you and your doctor will likely consider starting treatment. If your CD4 count is between 350 and 500 cells, you may choose to begin treatment. If you do not begin treatment, you and your doctor will likely monitor your health more closely. This will include regular lab tests, such as blood tests to measure your CD4 count, to watch for any new trends.

If you want to have a baby and are planning to become pregnant, you should discuss your HIV treatment options with your doctor. By discussing pregnancy plans with your doctor, you can decide on a treatment strategy before becoming pregnant and dramatically reduce the risk of HIV passing to your fetus.

For HIV-positive people with CD4 counts above 350 cells, there may be another argument for starting treatment, based on our growing understanding of the long-term consequences of HIV infection. Untreated HIV infection results in ongoing inflammation that puts people with HIV at risk of cardiovascular disease (heart attack and stroke), cancer, bone and kidney problems, and possibly other health conditions. Because antiretroviral drugs help to reduce inflammation and growing evidence shows that being on treatment can reduce the risk of these problems, some experts suggest that people with CD4 counts above 350 cells but below 500 cells should consider starting treatment.

However, to say that treatment always reduces these risks may be oversimplifying the matter. Certain antiretroviral medications can raise the risk of heart disease. Some medications also appear to contribute to bone mineral loss. Researchers are still investigating this complex topic of long-term risk, to better identify who is most likely to benefit from starting treatment earlier.

Finally, as we discussed earlier in "Do I Have to Take Antiretroviral Drugs at All?," successful antiretroviral treatment might reduce your chances of transmitting HIV to a sexual partner. This has led some experts to suggest that many new infections can be prevented by diagnosing and treating as many HIV-positive people as possible -- a concept called "treatment as prevention."

How this affects your decision about when to start treatment is, of course, another question. As we mentioned, treatment does not guarantee that you cannot infect anyone else, and it is not a substitute for practising safer sex. There are many uncertainties, and you may want to discuss this issue with your doctor or an infectious disease specialist. Your personal medical condition, including the factors we've discussed in the previous pages, is still the most important consideration when it comes to starting HIV treatment.

It's worth repeating this: Guidelines change to keep up with the latest research. Base your treatment decisions on the most up-todate information. CATIE can help you get the information you need. Give us a call at 1-800-263-1638 or visit us online at www.catie.ca.


Summary of When to Start Treatment
CD4 Count and Physical ConditionRecommendation
CD4 count below 200 cells or any significant symptoms or conditions related to HIV infectionStart treatment immediately
CD4 count below 350 cellsStart treatment
CD4 count above 350 cellsConsider starting treatment
Women who are pregnant or considering becoming pregnant (with any CD4 count)Start treatment immediately if pregnant; consider starting treatment before pregnancy




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.
 
See Also
More on HIV Medications
More on HIV Treatment

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