Knowledge: Understanding the Details of Treatment
Part One of Three in Project Inform's "Considering Treatment and Your Health Care" Booklet
Although most people don't have outward symptoms of HIV for many years without being on treatment, it's extremely rare that the immune system can fully suppress HIV on its own. The longer you have untreated HIV the more damage it can do, making you more susceptible to infections and other health problems.
Improving Quality of Life
Being on HIV treatment should interfere as little as possible with your quality of life. It 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.
Improving Immune Function
Taking HIV treatment normally produces a higher CD4 count. Some people experience a rapid rise in their CD4s after starting treatment, but for others the increase may take more time. This is especially true if you wait to start treatment until your CD4 counts are very low, such as below 100.
Reducing Viral Load
HIV treatment makes it easier for the immune system to control HIV. The goal is to keep HIV levels as low as possible for as long as possible, preferably below 50 copies (called undetectable). The minimum change that shows treatment is working is lowering your virus level by 90%, or a 1 log decrease (such as 10,000 down to 1,000).
Reducing Drug Resistance
When HIV is fully suppressed by HIV meds, it's less likely to change and become resistant to the drugs. Taking every dose as prescribed and staying undetectable can help prevent resistance. Most commonly used HIV meds are so good now that they're able to overcome drug resistance for many years even with one or two doses missed every once in a while.
Helping Prevent Transmission
People who take HIV meds and stay undetectable are less likely to transmit HIV. However, even with good adherence to an HIV regimen, there's still some risk in transmitting HIV -- for example, active sexually transmitted diseases (herpes, syphilis, etc.) can increase the risk. It's important to continue engaging in safer sex.
The following factors can help you and your provider choose the best time to start treatment.
Your CD4 Count Trend
A trend is when you look at two or more CD4 count results to see how much they change. Over time, falling CD4s indicate declining immune health. A loss of 100 CD4s or more each year shows a weakening immune system. Don't panic about a single lower test result, but consult with your doctor and consider another test to determine your trend. (Read more)
Your Viral Load Trend
Increasing HIV levels over time indicate that the virus is reproducing and can infect more CD4s. Again, the trend is important: consider two or more test results to inform a treatment decision. Experts generally agree that viral load rising above 100,000 is a sign to start.
Your General Health
If your health is good and stable, then starting treatment right away may not be necessary. But if you have some symptoms of HIV disease, despite a good CD4 count, starting is usually the right decision. On the other hand, if you have an illness that may make it difficult to take HIV meds, it may be better to wait until that illness has resolved. Your doctor can help you make this decision.
Are You Ready to Start?
You should begin treatment when you feel you're ready, but you shouldn't put it off until all your fear is gone. Being ready includes being emotionally ready to commit over the long-term, as well as being able to take pills every day, manage possible side effects, and make sure you have ongoing health care. It might also mean dealing first with other issues such as finding stable housing or mental health or substance use services.
These conditions increase the urgency to start:
Starting Treatment Between 0-350 CD4 Cells
Waiting to start until a CD4 count drops below 350 puts you at much higher risk of developing many health problems. These can include conditions related to HIV (pneumonia, certain cancers, etc.) and other conditions (heart attacks, kidney disease, etc.). Almost all doctors would agree that people with low CD4 counts should start treatment as soon as possible.
Starting Treatment Between 350-500 CD4 Cells
The risk of getting sick isn't quite as high in this range. Fewer studies confirm the benefits of starting in this range compared to lower CD4s. For this reason, you may have more time to get ready to start. However, it's important to understand that some studies suggest your risk of getting sick is higher if you don't start in this range. Longer-term damage to your body is occurring as long as HIV is not kept low.
Starting Treatment Above 500 CD4 Cells
A couple of studies show a lower risk for getting sick in people who start this early. Many other studies show that early damage to your immune system and other parts of the body happen when HIV isn't well controlled -- no matter the CD4 count. As well, people who are on treatment with undetectable HIV are much less likely to pass on HIV to their sex partners. However, even though the risk of side effects is much lower with modern treatment, taking meds longer could increase your chance of developing certain side effects. It's reasonable for someone to start above 500, but the pros and cons should be carefully considered.
Your first regimen will probably include three drugs from two different classes. These classes work against different steps in the life cycle of HIV. Using at least two classes together provides better and longer-lasting health.
Below is the current list of HIV meds, organized by class and then listed by brand name, generic name and year of FDA approval. Some drugs are no longer used or not used often in the US, while others are used only in special situations.
NRTIs (Nucleoside/Nucleotide Reverse Transcriptase Inhibitors)
PIs (Protease Inhibitors)
INI (Integrase Inhibitors)
NNRTIs (Non-Nucleoside Reverse Transcriptase Inhibitors)
The Guidelines list "preferred" and "alternative" HIV regimens. Research shows that "preferred" regimens are potent, better tolerated and easier to take. These are listed below. "Alternative" regimens are second choices but may work just as well. These can be found in the Guidelines.
The most powerful and long-lasting control of HIV comes from a person's first regimen if taken properly. The longer a person can stay on it without major side effects or drug resistance, the better.
To tell if your regimen is working, you should see a 90% drop in your viral load within a month or two. (See page 5.) Most people can reach an undetectable level within six months, although it may take up to a year if you're over 50 or have another condition like hepatitis C.
When a person's viral load remains undetectable for at least one year on treatment, it usually remains that way for at least another two years, assuming they take their meds as prescribed. Some people have been able to stay on their first regimen for up to eight years without having to switch. This is true for almost any regimen.
Main Points to Remember
Viral Load Test
A viral load test is used to check how well treatment is controlling HIV. It 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 12-24 weeks. Several things can influence this, including taking the meds as prescribed and the potency of the regimen. 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. 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, or you may not see a large gain. Older people and those with hepatitis C may also have smaller gains.
The CD4 percentage shows the proportion of all white blood cells that are CD4s, which in people living with HIV averages about 25% or more. This marker tends to change less often between tests than the CD4 count, and it may be more reliable. A decreasing CD4% over time shows a weakening immune system, and one that falls below 14% is an AIDS diagnosis.
Drug resistance occurs when HIV mutates, or changes enough so that a drug or regimen doesn't fully control it anymore. Resistance usually occurs when drugs are not taken as prescribed and consistently on schedule. Some people (about 1 out of 9 per year in the US) get a strain of HIV with some level of resistance. However, HIV is rarely resistant to all HIV meds, so learning ahead of time which drugs it is resistant to (if any) can help you choose the best regimen. The US Guidelines recommend that people get a genotypic resistance test before they start or change treatment. People who choose HIV meds guided by resistance test results have better control of HIV over time. 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.
Main Points to Remember
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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