Advice to Patients Recently Diagnosed With HIV
Being infected with HIV is no longer a death sentence. HIV is now looked on as a chronic manageable condition. However, having HIV is no picnic, either. Like diabetes, it can cause complications if not treated appropriately. The more you learn about HIV and how you can take an active role in treating it, the more likely it is that you will remain healthy and free of complications. To remain healthy will require your active participation.
Based on our knowledge of HIV and the treatments currently available, having HIV means being infected for the rest of your life. We are hopeful that research will lead to a cure for HIV, but that cure does not exist yet. There have been dramatic advances in the treatment of HIV during the past five years. These advances will, without a doubt, continue to develop at a very rapid pace. Although you may need to be on some type of treatment for a long time (perhaps for the rest of your life), the specific treatment you and your healthcare provider choose now will most likely change as we learn more about HIV, HIV treatments, new drugs, and new drug combinations.
Effective Management of HIV
After learning that you are HIV-positive, it is important to see you doctor regularly. This usually means every two to three months, though your initial visits may be more frequent than that. During this time you will learn a lot about HIV and treatment options that are appropriate for you. Also, during these initial visits you will learn about T cells, the immune system and your viral load. You will learn how these numbers are used to determine whether you should start treatment early or defer to a later date. Regardless of what choice you and your doctor make, it is important that you see your doctor regularly to monitor the state of your immune system. These visits to your doctor will also allow you to learn about new developments in the treatment of HIV.
When to Start HIV Treatment
Before you decide which treatment is appropriate for you, you will have blood tests done to determine whether it is recommended that you begin treatment now, or if you may safely defer treatment to a later date. The treatment guidelines have evolved and changed as we have learned more about HIV and response to treatment. For example, three years ago most experts agreed that anyone with HIV should be treated aggressively as soon as the diagnosis was made. This has been referred to as "Hit Hard, Hit Early." This one-size-fits-all approach is no longer applicable.
Blood tests will determine the number of T cells (the CD4 count) and the amount of virus (the viral load or HIV PCR RNA or HIV bDNA) in your blood. These numbers will help to determine whether it is safe for you to continue to be monitored without medication (antivirals or antiretrovirals) or whether you are at high risk of becoming sick from HIV and would benefit from starting these medications now
Choosing an Initial Antiviral Regimen
If you and your doctor agree that it is safe to monitor your blood tests without treatment, it is important that you have these blood tests done regularly. This means usually every three months.
If your numbers suggest that you should begin treatment, you and your doctor will discuss options that are available to you. There are many approved medications available and many others in advanced stages of research and development. These medications are used together in groups of three or four medications often referred to as a cocktail. It is important that your doctor be an expert in the use of these medications. You do not need to become an expert, but the more you learn about HIV and how these medications work to suppress HIV, the better you will do with treatment.
Adherence to treatment regimen is key to success
The most important thing you should understand at this point is that you must be ready to commit to HIV treatment exactly as prescribed by your doctor. If you start a treatment regimen but do not adhere to your prescribed medication schedule, the virus will have an opportunity to develop resistance to the drugs, and will not be completely suppressed in your body. It is extremely important that you understand this concept. If you do not understand what this means, or feel that you are not ready, you must discuss this with your doctor. You can easily do more harm than good if you do not take the medications as prescribed.
Learn About Side Effects of HIV Drugs
Each drug and each drug class has side effects that may occur shortly after starting the regimen. Many of these short-term side effects diminish within a few days or weeks of starting the regimen. Your doctor can give you important advice on how to manage these side effects. Some drugs have the potential to cause some serious side effects that can be life threatening. It is important that you be aware of the signs and symptoms that you must look for and report immediately to your doctor. These serious side effects are rare, and hopefully fear of them will not prevent you from starting therapy.
We are learning more about the long-term side effects of therapy as well. It is not clear whether some of these effects are due to HIV itself, one or more of the drugs, or a combination of both. Many people worry about these long-term effects. It is important that you discuss this with your doctor also. Clearly, allowing HIV to progress to AIDS is much more serious and life-threatening than any of these other side effects that may occur.
Get Vaccinated for Preventable Infections
Whether you start therapy or determine that it is okay for you to defer therapy, your doctor will recommend a series of vaccinations or immunizations. These are just like the shots you received as a child to prevent you from acquiring measles, mumps, tetanus, or other common viral infections. It is important that you receive these shots, as they help to prevent infections that could later tax your immune system or cause serious and life-threatening illnesses. This series of shots can take up to six months to complete. It is important to keep your appointments to receive these shots on time.
Take Precautions to Prevent Spreading HIV to Others
Once you know you have HIV, you will probably have questions about steps you can take to reduce the risk of spreading the HIV virus to other people. Your family, sexual partners, and roommates may have significant concerns about this also. You and your doctor will review safer sex guidelines. Sex can be difficult to talk about, but it is important that you understand safer sex guidelines, and ask any questions you may have. Sexual activities that result in the exchange of body fluids lead to a higher risk of transmitting HIV. Other sexual activities are less likely to transmit HIV. Your doctor should discuss safer sex practices with you in detail.
In addition to having safer sex, you must not share needles. Although controversial, needle exchange programs have gone a long way to reduce the spread of HIV in people who use IV drugs.
Since HIV is spread very easily through blood and blood products, anyone with HIV infection will not be able to donate blood.
There are many fallacies about how HIV is spread. For example, some people still believe that you can get HIV from someone by eating off of the same plate, using the same glass, or sitting on the same toilet seat. These are not ways that HIV is spread.
Keep Your Immune System Strong
A number of common-sense issues are important. Get plenty of rest, eat a well-balanced diet, and exercise regularly. Avoid excess amounts of alcohol, and if you smoke, you will do yourself a favor by stopping. There are medications that help increase your chances of stopping and "staying stopped." Ask your doctor if those medications are appropriate for you. Avoid the use of recreational drugs.
Take an Active Role in Treating HIV
Find a doctor or healthcare provider who you feel comfortable with. Realize that you will be living with HIV for the rest of your life. Prepare yourself to learn about HIV and HIV treatments. You do not need to devote your life to HIV unless you choose to. You cannot learn everything overnight. There are many sources of information about HIV. Find the ones that work best for you.
Find someone to talk to
Many people feel that they do not want anyone else to know that they have HIV. As time goes on however, most people do find at least one or two people that they feel they can trust. It is important to find support from someone. If not someone close to you, consider a support group or online group. Your doctor or social worker can often help you with finding support. These sources of support can help you feel less alone. It can be very reassuring to know that others have gone here before you.
HIV infection is now a manageable, chronic infection in many cases. The more you learn about HIV and the steps you can take to control it in your body, the more likely you will live a normal, healthy life.
Last Updated: 08 April 2016
Reviewed by Harry Croft, MD