Advice to Patients Recently Diagnosed With HIV

Written by Bruce Olmscheid, MD

Introduction

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

advertisement

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.