Learning How to Treat HIV Disease
Part One of Three in Project Inform's "Considering Treatment and Your Health Care" Booklet
The relationship between HIV levels and risk of disease progression is complicated and varies from person to person. Although some people can maintain good health for many years without being on treatment, it's likely that the immune system will not fully suppress HIV on its own over time. The longer you have untreated HIV the more damage it can do to your immune system, making you more susceptible to infections and other problems.
Being on HIV treatment can greatly extend a person's life, but it should interfere as little as possible with your quality of life. The regimen should be easy enough to use so you can take every dose as prescribed. For most people, it's possible to find a regimen that works well with minimal side effects or drug interactions. If you cannot tolerate a drug or the regimen isn't working for you, it's possible to switch to other options.
Restoring and Maintaining Immune Function
HIV treatment can greatly slow down HIV replication. One outcome of this is a higher CD4 count, because when less virus is produced fewer CD4s get infected and die. Some people experience a rapid rise in their CD4s after starting treatment, but for others the increase may take more time.
Reducing Viral Load
Reducing viral load makes it easier for the immune system to control HIV, usually leading to better health. The goal is to keep virus levels as low as possible for as long as possible, preferably undetectable (below 50 copies). People with high viral load before starting treatment may find their HIV levels drop slowly (perhaps six months or more), while those with less virus may see faster responses. The minimum change that shows treatment is working is 90% less viral load, or a 1 log decrease.
Reducing Drug Resistance
Drug resistance can happen when the virus changes enough so that HIV drugs no longer work. When HIV is fully suppressed, it's less likely that it can become resistant. Therefore, using a potent regimen that fully suppresses HIV is a key goal for treatment. Taking every dose as prescribed and maintaining undetectable viral load can help prevent resistance.
Helping to Prevent Transmission
Individuals on potent HIV regimens who maintain undetectable viral loads are less likely to transmit HIV, although active STDs increase the risk. Even with good adherence to an HIV regimen, there's still some risk in transmitting HIV, so it's important to continue engaging in safer sex.
The most difficult issue you'll probably face about treatment is when to start. If taking HIV meds was as easy as taking a vitamin every day -- without side effects or risks from long-term use -- then deciding when to start would be easier.
Given certain aspects of your life, you may think that you can't start HIV treatment. Perhaps you don't have a place to live, struggle with alcohol or drug use, or have other health concerns to deal with. Although such problems can present unique challenges, people in these situations can do well on treatment and services are available to help.
There's a lot riding on this decision and a lot to contemplate before you decide, so it's natural to feel anxious or overwhelmed. Nevertheless, hundreds of thousands of people have found a way to balance their medical needs with their treatment concerns and quality of life and still come to reasonable treatment decisions. And you can too.
There's no one proven "right" time to start HIV meds, although the US Guidelines offer recommendations based on latest research. Experts differ in their opinions about whether to start early in the course of HIV infection or later.
It can take about 10 years from initial infection before serious symptoms appear. But HIV continues to damage the immune system during this time -- shown by a falling CD4 count -- and HIV may cause inflammation that affects all parts of the body. Early treatment can preserve your immune function and may contribute to better overall health.
But starting treatment very early may mean that long-term side effects and drug resistance will occur sooner. It is not yet known what all these side effects might be. If and when they happen they may not be corrected so easily for some people. Other possible drawbacks include drug interactions, adherence issues, covering their cost (read the section, "Getting your health care covered"), and stigma (read the section, "Are you ready?"). For more information, read Project Inform's publication, Attaining HIV Health & Wellness: What you should know about when to start and what meds to use.
While early treatment can be clearly beneficial at times, when to start remains mostly an individual decision. For some people, it's an easy and clear decision. For others, getting more information may be more helpful. Still, others may need more time to get used to the idea. It's important that you're comfortable with your treatment plan and that you start without feeling pressured yet with the knowledge that you can succeed.
Even if you're healthy and don't want to start HIV meds immediately, it's still a good idea to get into care, learn about your options and begin talking with your doctor about what to do and when to do it. Making decisions beforehand can help diminish some of the fear that can come with starting any kind of treatment for the first time.
Viral Load Tests
Viral load tests are used to check how well treatment is controlling the virus. The test measures the number of copies of HIV in a small amount of blood. People starting treatment for the first time usually see their viral load fall to an undetectable level within 1224 weeks. Several factors can influence this, including taking the meds as prescribed and the potency of the regimen. People with lower CD4s or higher viral loads may take longer to respond.
CD4 Cell Count
HIV treatment helps to preserve and increase your CD4 count, which means the immune system is getting better at controlling HIV and other infections. It's reasonable to expect an increase in CD4s after starting treatment, perhaps an extra 100 cells within the first 1218 months. However, the actual increase will vary from person to person. If you start treatment with a lower CD4 (below 200), it usually takes more time to reach higher counts. Older people and those with hepatitis C may also have smaller gains. With ongoing treatment, many people continue to see small increases over time while others may not experience the same.
Although the CD4 count is important -- and is one of the main test results that you and your doctor will use -- the CD4 percentage is also useful. This shows the proportion of all white blood cells that are CD4s, which in people living with HIV averages about 25%. This marker tends to change less often between tests than the CD4 count, and it may be more reliable. A decreasing CD4 percentage over time shows a weakening immune system, and one that falls below 14% is an AIDS diagnosis.
CD8 Cell Count
CD8 counts are not normally used to make treatment decisions, but they can provide useful information. CD8 cells seek out and destroy other immune cells that are infected with HIV. A CD8 count of 1501,000 is the average range for healthy HIV-negative people, but people living with HIV normally have higher CD8 levels perhaps because more are needed to kill infected cells.
CD4 / CD8 Ratios
Besides the numbers of CD4 and CD8 cells, another important test is the CD4/CD8 ratio. A normal ratio for HIV-positive people ranges from 0.96.0. An increasing ratio over time indicates immune recovery and shows treatment is working.
You should also get other regular blood tests done to monitor your health, including a complete blood count and chemical panel. Abnormal blood levels may point to certain conditions like anemia or illnesses such as a bacterial infection. Levels of various chemicals in your blood may indicate side effects or suggest possible liver or kidney problems. Review and understand what these test results mean as they can help predict your risk for other conditions.
Drug resistance occurs when HIV changes, or mutates, enough so that a drug or regimen no longer fully controls the virus. Cross resistance occurs when mutations that cause resistance to one drug also reduces the effects of other drugs in the same class. (There are nearly 2 dozen drugs in 5 classes.) Resistance usually occurs when drugs are not taken as prescribed, consistently on schedule.
The US Guidelines recommend that people get a genotypic resistance test before they start or change treatment. People who choose treatment guided by resistance test results have longer lasting treatment responses. In order to run a resistance test, you must have a viral load above 1,000. The test cannot be done accurately if viral load is below 50 copies.
Some studies show that up to 1 out of 6 newly infected people in the US have drug-resistant strains of HIV. It's important to know this before starting treatment: to choose the meds that will work the best. Therefore, taking a resistance test will give you and your doctor more information to make better treatment decisions.
Learning about HIV and your options may seem overwhelming at first. There's a lot of information to sort through and sometimes it can seem like it's written in a foreign language. But it's something that you can learn to read. Keeping up with the latest information and study results can help you make better treatment decisions and can make people feel empowered. Others prefer to rely on their experienced doctors and just learn general information. Both can work for you as long you have enough information to participate in health decisions.
Hundreds of studies are done every year on various aspects of HIV disease. Some results lead scientists to new discoveries about HIV; for example, how to combine drugs into more effective regimens or how to use a more sensitive blood test.
As you learn about HIV treatment, be aware of the source of the information you're reading. Be on the lookout for any false or misleading claims. Consider the reasons why this person or group wants to provide it. Project Inform believes the best information comes from unbiased review of clinical studies. People should consider this whenever reading treatment information.
Below is a list of good sources that summarize study findings and interpret what they mean for people living with HIV.
This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
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