Living With HIV

Introduction

Welcome! This section of the website is intended for people presently living with HIV.

The objective of this document is to enable you to take charge of your infection, to become an active participant in the management of your health and well-being through informed discussions with your health-care provider/physician.

It is perhaps unnecessary to read ALL of the information contained in this section, or at least not in one sitting. Take your time and explore the subjects of interest to you – adapt the information to your personal experience. The information found herein is organised according to the most frequently posed questions and concerns expressed by our patient population actively living with HIV/AIDS.

Please note: the educational information that follows is of a general nature and is intended to be accessible and applicable to the general population. Your personal medical situation may be unique and different from what is presented online. If you believe this is your case, ensure to discuss any concerns with your health-care provider/physician.

What is the difference between HIV infection and AIDS?

What is the difference between HIV infection and AIDS? While these two terms(HIV and AIDS) are often associated, and appear written together they do not mean the same thing, and actually reflect different stages of this infection.

HIV

HIV is the acronym given to the Human Immunodeficiency Virus.

A Virus : is an infectious agent – different from other infectious agents (of which there are many) that include bacteria, parasites, yeast infections etc.

Immunodeficiency: immuno refers to the immune system (the body’s defence mechanism) and deficiency refers to the state of weakened defence capacity.

Immunodeficiency therefore refers to an impaired immune system.

Human: the word human is specified given that several infectious viral agents are active solely in animals, and others in humans.

HIV is a virus able to attack and weaken the human immune system.

AIDS

AIDS is the acronym given to the more advanced stage of an HIV infection : the Acquired Immunodeficiency Syndrome.

Syndrome : This word signifies a constellation of symptoms.

Immuno refers to the immune system (the body’s defence mechanism) and deficiency refers to the state of weakened defence capacity. Immunodeficiency therefore refers to an impaired immune system.

Acquired : in contrast to an illness which is genetic or hereditary.

AIDS refers to an HIV infection that, over time has progressed such that the immune system is weakened to the point of compromise. This results in a susceptibility to infections and complications that would normally be prevented by a healthy immune system. Secondarily, once several of these infections or symptoms begin to occur together – an individual is considered to have developed AIDS. A person with AIDS, is always infected with HIV, given that it is HIV (the virus) that causes the progression towards the state of AIDS. In contrast, just because you have HIV does not imply that you have AIDS (you are not likely in the advanced stages of infection).

Finally, with respect to the terminology of HIV, you can declare yourself to be seropositive or a person living with HIV. These common expressions are used by people with HIV, regardless of their stage of infection.

Evaluating your health status

4 stages in the evolution of an HIV infection

The health-care provider that announced your HIV result likely suggested that you begin a regular medical follow-up specific to HIV. An HIV check-up will permit you to evaluate (in consort with your physician) your stage of infection and the overall health of your immune system.

In an attempt to evaluate your global health status, your physician will take a complete medical history (pertaining to your previous and current state of health) followed by a complete medical examination and a battery of laboratory tests. (please refer to the section What is an immune profile and CD4 testing? and What is viral load testing?) Depending on your previous and/or current state of health and age, your physician may also request that you undergo supplementary evaluations (x-rays, ECG, nutritional evaluation, etc.).

The combination of your physical examination and your laboratory results will permit you and your physician to evaluate the stage of your HIV infection. There are generally 4 stages that are described (these stages are not rigid, and patients may be at different points of their infection at different stages):

• Primo-infection
• Seropositive without symptoms
• Seropositive with symptoms
• AIDS

Phase 1 - Primo-infection :
This is the earliest stage of HIV infection – when the virus has just gained access into your body and your immune system has begun to react. This phase may be accompanied by symptoms that signal the onset of infection, however, many people have no symptoms whatsoever. When symptoms are present in this stage, they may be characterized by a flu-like illness and/or a mononucleosis-like infection. Some infected persons describe a severe sore throat that refuses to clear up. Some infected individuals develop a skin rash (red spots, plaques etc.). These symptoms typically resolve with time (typically days to weeks).

Be careful!! Just because you have one or several of these aforementioned symptoms does not mean that you necessarily have HIV. These symptoms MAY present in the primo-infection or early stages of HIV, but are too general to be ONLY attributable to HIV infection alone. Symptoms alone do not permit the diagnosis of HIV – the only way to diagnose and confirm an HIV infection is via a blood test.

Blood testing and confirmation of HIV: When your physician announces your HIV test result, this result is based on a series of assessments: initial screening tests done on your blood to detect and identify antibodies (the bullets of your immune system) that are created specifically to attack HIV. This test is not 100% accurate, which is why blood is then automatically sent to the Public Health Laboratory of Quebec for confirmatory testing. This series of tests evaluates further in an attempt to confirm, without a doubt, the presence of HIV. This is achieved via the research for not only antibodies directed against HIV, but also the actual HIV virus itself. It is with this series of laboratory results that your physician will advise you of your seropositive status. IN ALL CASES, it is recommended that a second series of tests be undertaken : while laboratory error is not frequent – it must be excluded.

Primo-infection typically resolves within weeks (sometimes months) after the virus has invaded your system.

Phase 2 – Seropositive without symptoms
During this stage, the immune system is actually in good health, and therefore it is quite rare that patients in this phase suffer from symptoms secondary to HIV infection. While may factors may have an impact on the duration of this asymptomatic phase, the average duration of this period is described as anywhere from 5 to 7 years (Of note!! There is a great deal of variation in this phase – it COULD extend from 1 year to over 15 years! Or more! Or less!). There is a great of individual variability in the human response to HIV infection.

Phase 3 – Seropositive with symptoms.
Given the progressive weakening of the immune system, there is a point where the body has a more difficult time defending itself from certain otherwise inoffensive infections. When an individual has progressed to this stage of infection, there may be a variety of symptoms or physical complaints including : fatigue, persistent diarrhea, fever, a range of skin problems, weight loss, swollen and /or painful lymph nodes etc.. These symptoms are typically due to infections that are difficult for someone with a compromised immune system to fight off.

Phase 4 – AIDS
As you may have read in the preceding section (please refer to: What is the difference between HIV infection and AIDS?), AIDS is the most advanced stage of an HIV infection. The immune system is compromised and generally extremely weak. Individuals afflicted with AIDS are at great risk of infections that may seriously jeopardize health and may at times be fatal. These infections – able to infect the AIDS patient when the opportunity of an extremely weakened immune system presents itself are termed « opportunistic infections ». They do not general threaten someone whose immune system is healthy or only mildly weakened.

Will I necessarily progress through all of these phases?
Prior to the onset of antiretrovirals (medications used to manage HIV infections), all HIV positive individuals progressed from phase 1 through 4, and this without great exception. With the advent of highly active antiretroviral medications, it is possible to manipulate the virus and it is no longer necessary to progress systematically through HIV to AIDS without the hope of improvement. While it is impossible to regress from phase 2, 3 or 4 to phase 1 (primo-infection), it is possible to reverse the progression of infection and to improve someone’s condition: from AIDS to phase 3 or 2, as an example. The goal of an appropriately timed treatment intervention is to prevent the HIV virus from degrading your immune system – and to assist you in maintaining your health at its optimal level.

Regardless of the stage of infection at which you are diagnosed, there are medications available that will effectively permit you to control your HIV, slow down its progression and ideally improve your overall immune and health status. You in control of the virus, and not the opposite!

What are CD4 cells?

In order to be at ease interpreting your CD4 test results when you visit your physician, it is important to understand the role of your CD4 in your immune system.

As mentioned in the section « What is the difference between HIV and AIDS? », HIV is a virus. The main goal in life of a virus is to reproduce (create new infectious virus). In order that the HIV virus may reproduce it requires the machinery found in a human cell – it will not survive in isolation. As an example – look at the influenza (flu) virus that requires cells found at the level of the respiratory tract (lungs). The HIV virus has a preference for the immune system cells called CD4 (T4 in some publications). The role of your CD4 cells is to co-ordinate your immune system. In the process of using your CD4 cells to further its own reproduction, HIV ends up destroying its host (CD4) and thereby is able to cause a weakening of the immune system.

It is possible to monitor the number of CD4 cells present via a simple blood test. This test is termed the “CD4 cell count”. The range of CD4 values is quite large – when the CD4 count is above 500, the immune system is considered to be in good health and able to adequately protect an individual from infections. As HIV progresses, CD4 cell counts tend to decline unless of course the progression is arrested by antivirals (anti-HIV medications).

The risk zone :
When the CD4 cell counts fall below 200 there is a greater risk of infections and/or complications related to HIV. CD4 cell counts below 200 are an indication of a compromised immune system.

So, CD4 cell counts are one of the methods your physician employs to evaluate the state of health of your immune system. Your physician will usually suggest that you undergo this blood test on a regular basis (approximately every 3 months – give or take!).

There are not only absolute numbers when it comes to evaluating CD4 and your immune system. Your physician may monitor (via the same blood test) the percentage of CD4 cells and the ratio of immune cells – all provided in your routine immune profile. Taken together, these values assist you and your physician in evaluating the overall state of your immune system (seeing as there are several other types of immune cells in our body). Speak to your physician regarding your most recent results and the overall trends of your immune system.

In addition, it is extremely important to understand that the number of CD4 cells varies tremendously from one day to the next, and even within the same day. The results taken during one blood test are like a snapshot of your immune system at that particular moment. It is for this reason that it is much more useful to COMPARE results from one blood test to the next and evaluate the trends in your immune system. What is important to evaluate (with several sequential tests in hand) whether your immune system is stable, getting stronger or weaker over time. Of note! One should never make decisions based on one single blood test (repeat and compare when results are unexpectedly different), nor should decisions be made based on absolute CD4 cell counts alone. CD4 cell numbers may fall without there being an impact on the overall health and stability of your immune system. In conclusion, your immune profile and its various elements when taken together and compared with your previous analyses will permit you and your physician to determine your current immune health status.

What is the viral load?

Not only is it important to be aware of the status of your immune system via the CD4 cell counts (please refer to the section « What are CD4 cells? ») but also the quantity of HIV virus that is present in your body.

You will recall from the previous section that the primary goal of HIV virus is to reproduce itself. The viral load test will permit you and your doctor to measure the quantity of HIV virus present per milliliter of blood. These results help to assess the activity level of the virus and your immune system. When the viral load is extremely elevated, HIV is actively reproducing and your immune system may be having trouble bringing it under control. When the viral load is low – the virus may be relatively inactive and/or your immune system may be efficiently managing the infection (even without medications early on in the infection).

Viral load results permit your doctor to evaluate the rate of progression of your infection. In summary: the greater the viral load, the faster your infection may progress (greater numbers of CD4 cells destroyed and your bone marrow can’t pump out enough new cells to compensate) and the lower the viral load, the slower the infectious process (fewer CD4 cells destroyed and your bone marrow is able to compensate for the amount of destruction incurred). The viral load also permits the evaluation of your response to treatment (please refer to the section “How do I know if my treatment is functioning?”).

Viral load results vary greatly from one individual to the next. The viral load may fluctuate widely within the same person on the same day. Results can be as low as below 50 (termed undetectable in the blood – and this at times even without medications) up to levels in the millions of copies of HIV per milliliter of blood. The greater the viral load, the greater the activity and reproduction level of HIV thus increasing the risk of a progression in the weakening of your immune system. Of note: There are ALWAYS exceptions to the rules – if you have concerns pertaining to your personal results – speak with your doctor!.

The danger zone :
When the viral load rises above the level of 100,000 copies/ml of blood, the virus is considered to be actively reproducing thus increasing the risk of a rapid decline in CD4 cell counts responsible for the progressive weakening of your immune system. (Be careful!! High viral loads do not always result in rapidly declining immune system status – there are always exceptions to the rules).

Undetectable viral load :
A viral load below the level of detection indicates an extremely low quantity of HIV virus in your blood. Current laboratory testing in Quebec and Canada permits the detection of HIV down to the level of 50 copies/ml of blood. When your physician tells you that your viral load is undetectable it means that there is so little HIV virus circulatin freely in your blood that currently used machines are unable to detect its presence in the blood. Undetectable is a great thing – it means there is very little virus able to destroy CD4 cells and thereby enables your body (bone marrow) to slowly rebuild your immune system.

It is important to understand, that while your viral load is « undetectable », this does not mean that you no longer have HIV in your system. Unfortunately, it is currently impossible for currently available medications to completely eliminate HIV from the body (please refer to the section « Why are treatments unable to completely erradicate HIV from the body? »). Despite an undetectable viral load you are still infected with HIV. In addition, an undetectable viral load in the blood does not necessarily correspond with the level of HIV or viral load in other parts of the body and/or biological secretions from the body. Despite an undetectable blood viral load, there may be detectable virus in vaginal secretions, pre-ejaculate (pre-cum), ejaculate (cum) and maternal milk (breast milk). The bottom line is that even if you are “undetectable” you are still able to transmit HIV to your sexual partner.

As with the case of CD4 test results, it is important to place the results into the context of your trends – an isolated result is like a snapshot of one moment in the life of the HIV infection process. Given the great degree of fluctuation in results – comparing results and determining the trend is essential. Of interest – viral load results may vary as a result of events that your body is subjected to: recent vaccination, recent infections, excessive recreational drug use and extreme stress may all have an impact on results (increased viral loads in these examples). From time to time there may be laboratory error – this is important to remember when your results deviate greatly from your typical result trend. When results are unexpected – your physician may decide to repeat the tests thereby confirming lab error or true results. Decisions and modifications regarding treatment intervention should never be made based on a single laboratory result – particularly if the result is unexpected for you.

TREATING HIV

When should I start medications to treat HIV (antiretrovirals)?

The ideal moment to begin medications intended to suppress and control HIV may vary from one person the next. When evaluating your need for therapy, your physician will look at a combination of factors:

• The stage of infection
• The status of your immune system/CD4 cells
• The level of HIV viral load
• YOU! (The person who will take the medications on a daily basis)

The stage of your infection:

If your infection is quite advanced (stage 3 or 4) and you are suffering from symptoms/complications secondary to HIV, your physician will recommend that you start antiretrovirals (anti-HIV medications).

The state of your immune system :

When your CD4 cell counts fall below 200, you are at risk of developing an opportunistic infection (an infection that takes advantage of your weakened immune state). Opportunistic infections can lead to serious complications, and at times be fatal. If you have less than 200 CD4 cells your physician will recommend that you begin antiretrovirals.

On the other hand, if your CD4 cell counts are greater than 350, your immune system is considered to be strong enough to protect you from your environment – opportunistic infections would be rare. This is good news! Your physician will recommend that you wait…antiretrovirals are not indicated at this level of immune function (UNLESS! You have symptoms caused by HIV – discuss this exception with your doctor).

The grey zone is when the CD4 cell counts fall somewhere between 200 and 350, that regular follow-up is extremely important. Routine testing will enable you and your physician to select the appropriate moment to commence antiretrovirals – This level of CD4 counts is relatively strong and able to protect against most infections. Your physician may or may not recommend treatment for HIV – At these levels of CD4 cell counts the decision to initiate therapy is individualized – case by case. Speak with your doctor. Current research is tending towards treatment initiation for CD4 levels that are declining towards and below 350.

The person taking the medications (that would be you!) :

Starting medications is an extremely important step – one that requires an adapation period. Psychologically you must be ready to accept and start therapy. Perceptions, misperceptions and feelings you may have pertaining to medications or pills in general are important to recognize and address…they may influence your treatment success.

Given the important role you have as the manager of your medication taking, your physician will evaluate your readiness and capacity to initiate antiretrovirals. Please ensure that you are at ease in discussing your concerns regarding treatment initiation with your doctor. If therapy is indicated, and you are not “ready” – speak with your physician or related health-care expert on avenues designed to assist you in getting ready to “get started”.

In addition, there are several other factors that may influence the moment that you begin treatment. Concomitant infections may need to be treated prior to starting medications against HIV. Existing health problems may need to be stabilized prior to commencing medications. Pregnancy will have a significant impact on the timing of antiretroviral initiation etc. Feel free to discuss the impact co-existing health conditions may have on starting antiretrovirals.

Of note: from time to time individuals express their desire to defer treatment until they are ill. This approach is not free of risk. It is important to remember that when an individual with HIV progresses to the point of AIDS (symptoms relating to immune dysfunction) their weakened immune status places them at risk for opportunistic infections. These infections, poorly controlled by a compromised immune system may be difficult to treat, may require hospitalization, may result in long-term side-effects or complications and may at times be fatal. Ideally, the purpose of intervention with combination medications against HIV is to PREVENT the ultimate progression to AIDS and thus avoid the potential health problems inherent to this advanced stage of infection.

How does anti-HIV treatment work?

Medications used to manage HIV are called antiretrovirals (ARV is a common abbreviation).

Antiretrovirals function in a fashion similar to antibiotics – while antibiotics attack bacteria and antiretrovirals attack viral invaders (in the case of HIV – a retroviral infection). It is not quite accurate to say that ARV medications actually attack HIV – in fact they target different paths along the reproduction cycle of HIV and thereby prevent HIV from multiplying or reproducing.

The HIV virus has a very short lifespan in the human body. As mentioned earlier, the virus has as its main objective its survival and reproduction of new infectious virus (make new copies of HIV). The role of ARVs is to prevent replication. When this is achieved with medications the virus dies without making copies of itself. It is in this manner that medications allow you to decrease the amount of HIV in your blood and body – ultimately resulting in a decreased viral load. Once again, the logical process is simple: we prevent the virus from reproducing and the virus dies off decreasing the amount of virus present thereby slowing down the destruction of the immune system and ultimately permitting your body to rebuild your immune system.

The objectives of treatment are as follows :

Lower your viral load : maintaining suppression of the virus permits low viral activity and fewer CD4 cells are infected. Ideally, in the weeks to months subsequent to the start of medications your viral load should decrease to below the level of detection. (Undetectable viral load: please refer to the section “What is viral load testing?”).

Stop the decline/loss of CD4 cells: given that the majority of AIDS related infection and complications (opportunistic infections) occur when CD4 cell counts fall below 200, it is critical to attempt to avoid the decline towards this precarious level. Prevention of CD4 cell progression below 200 is essential in the prevention of the progression to full blown AIDS.

Ideally, one of the objectives of treatment of HIV is to ultimately increase the number of CD4 cells and reinforce your immune system. This is particularly important if your therapy was started when you were already at a low level of CD4 cells. Treatments often (sometimes quickly, sometimes slowly and every time frame in between) permit the reassuring rise in CD4 cells. The goal is to reach levels above the “danger zone” of 200. Of note: one should not be obsessed with the number…while your CD4 cell counts may not be rising dramatically – if you are in the safe zone (above 200 and are doing well and feeling well…that is the most important result!). Your clinical or overall health status is more important than the absolute numbers – if you are troubled by your results- speak with your doctor.

The combination of your viral load tests and CD4 cell counts are very helpful in evaluating your response to medications. Feeling well and maintaining control with an undetectable viral load and rising CD4 cells are the sign of a successful antiretroviral therapy…YOU are in charge!!

Unfortunately, there is no current medication or combination of medications that enable us to cure or completely eliminate HIV from the body (please refer to the section « Why are treatments unable to completely erradicate HIV from the body? »). Nonetheless, combination therapies of ARVs have greatly improved the lifespan and quality of life of individuals living with HIV. Since the advent of the first « triple therapies » in the late 1990s, there has been a significant decrease in the rate of infections, their complications and death secondary to HIV/AIDS (greater than 80% reduction).

Why is it necessary to take several medications at the same time?

In 1996, the currently recommended triple therapy approach (the combination of three different antiretrovirals) was first widely recognized as the best way to manage HIV infection

Prior to the onset of triple therapy, the use of single ARV or double combinations of ARVs permitted the virus to quite rapidly develop resistance to the medications used thus permitting the virus to « break through » therapy and continue to reproduce despite medications. (please refer to the section: “What is resistance?”).

Current recommended therapies to control HIV are all permutations of combinations of at least three currently available antiretroviral agents. The logic behind this approach is that it greatly decreases the risk that the virus develops resistance to the medications employed. If resistance is unable to develop, therapy should, in theory, work forever.

What are the different types of antiretrovirals?

Antiretrovirals can be divided into several classes or categories of medications. Each different class of medication attempts to inhibit the replication of HIV at a different point in its reproduction path. What follows is a general review of the different medication classes – please refer to the link section to review medications under review or undergoing clinical research. The list of antiretrovirals is constantly expanding – refer to your physician, community support group or the internet to explore “up and coming medications”.

HIV medications fall into six types or "classes":

• NRTIs (nucleoside or nucleotide reverse transcriptase inhibitors)
• NNRTIs (non-nucleoside reverse transcriptase inhibitors)
• PIs (protease inhibitors)
• Fusion inhibitors
• Entry inhibitors 
• Integrase inhibitors

All six classes of medications have been designed to interfere with HIV's ability to copy itself -- that is, to reproduce inside your body. Each class of medication stops the virus at a different moment in its reproductive cycle.

How to choose the best combination of medications?

There is not one single combination of medications that would apply to everyone. In the same manner that each person is an individual, the treatment MUST be individualized. The combination of medications that works for one may/may not work for you. The selection process is done taking into consideration several key factors (and following regularly updated and approved treatment guidelines reflecting research in this rapidly evolving science).

When discussing your treatment options, your physician will evaluate the following critical factors to success :

• Is this your first antiretroviral therapy?
• If you have previously taken medications…does your HIV virus have resistance (knowledge to « get around » the medication(s)? (please refer to the section: “What is resistance?”).
• Even if you have never taken medications…does your virus have resistance? (please refer to the section:“What is resistance?”).
• The currently recommended and approved medication combinations available in your province/state/country. These “guidelines” are compiled by working groups of health care professionals active in the field of HIV medicine. Treatment guidelines are developed based on research that documents efficacy, safety and tolerability of medications available.
• The potential side effects of the medications being discussed.
• You, your lifestyle, the side effects that you can/can’t possibly endure should they arise, and your personal preferences (once-a-day, twice-a-day, three-times-a-day etc.)
• Co-existing medical problems and/or medications that you are already taking may have an impact on the medication selection process.
• Medication restrictions: the number of pills, as mentioned the frequency of dosing, dietary restrictions, pill size, conservation issues (refrigerated or not), etc.
• Future medication options may be factored into the decisions made today. Certain combinations may be selected such that a backup plan or “plan B” exists if your first combination is not ultimately successful.
• And many other individual factors… including your personal concerns regarding therapy. Don’t hesitate to ask your physician and ensure that your share your concerns prior to starting your medications. You can alsor include your pharmacist as part of your “expert working group” able to answer medication related problems.

How do I know if my treatment is working?

The best way to evaluate the success and efficacy of your antiretroviral therapy is a stabilization/increase in your CD4 cell counts and a decrease of your viral load to levels below the limit of detection.

Of importance!! Recall…an improvement in your overall sense of well-being and general health is the major goal of antiretroviral therapy – don’t fixate too much on the numbers, particularly if you are « feeling better ». Feeling better is also an indicator that your treatment is working for you!

Why are treatments unable to completely erradicate HIV from the body?

The HIV virus does not limit itself exclusively to the CD4 cells in your blood. It is also found in numerous other “reservoirs” or sites in the body. Some of the many “reservoirs” where HIV may lodge and hide out from medications are: lymph nodes (immune intelligence centers of the body – present all over the place), the digestive system (gastrointestinal tract), the brain, the testicles and ovaries etc. In these various sites, HIV goes into a latent phase, or dormant phase where it is not actively reproducing itself. Given that all currently available medications target different phases of the HIV reproduction cycle they are unable to attack virus that is not replicating. Without replication (in a sleeping virus) the medications, regardless of the combinations used are useless in these sites. The presence of reservoirs is what currently makes it impossible to completely eliminate HIV from an infected individual.

What are the potential side-effects of antiretrovirals?

Any medication currently available has the potential to cause side-effects – including antiretrovirals. In addition, given the individuality of each person, the potential response or undesirable reaction to a particular medication varies greatly from one to the next. Unfortunately, it is next to impossible to predict in advance who will have what side effect to ONE medication…imagine the combination of THREE or more! The process still requires a certain amount of “trial and error” – Many medications currently available have no significant side effects, others have minor common side-effects while others are considered to be very problematic for many.

When taking into consideration the various potential side-effects associated with your medications, one must consider the following:

Side-effects secondary to antiretrovirals can be categorized into 3 broad groups :

• Short term side effects, typically associated temporally with the beginning of treatment
• Long-term side-effects, typically appearing after prolonged periods of antiretroviral therapy
• Spontaneous side effects, referring to problems that may occur at any point during therapy.

There are many effective ways to « manage » side-effects, or to modify their impact on your quality of life.

Prior to commencing antiretroviral therapy ask your physician the following questions:

• What are the most common side effects of your proposed therapy?
• What is the best way to manage these potential side effects should they arise in the short or long term?
• What symptoms are important enough that you should consult rapidly (be examined)?

Speak with your physician, pharmacist or associated health-care provider regarding your side-effects experienced secondary to your medications. Quite often there is a simple and effective way to minimize the problem, if not resolve it altogether. Don’t hesitate to communicate with one of the aforementioned members of your health-care team if you are experiencing side-effects. If you are unsure – consult!

Generally, the body is able to adapt quite quickly to new medications. The short term side-effects should lessen and resolve within 4 to 6 weeks after medication initiation. This is good news!

Your medical follow-ups are extremely important when you are in the early phases of medication initiation (or when you have just changed your medication combination). There are several types of side-effects that need to be monitored closely in the first 4-6 weeks via a physical examination and/or blood laboratory tests in this adaptation period.

Typically, you will have a scheduled office visit 2 weeks after the beginning of a new antiretroviral therapy, such that blood tests can be taken in an attempt to identify problematic side-effects before they cause you a problem. If a problem is identified prior to it becoming a major complication – medication will be adjusted or replaced.

If you are in the situation where you have tried everything possible to manage a side-effect unsuccessfully and it is having a negative impact on your quality of life – speak with your physician. There may very well be a medication that could substitute for your problem ARV – It is in this manner that your therapy may need to be gradually “fine-tuned” such that it is successful and acceptable to YOU, the patient.

From time to time there are patients that will express the opinion that they felt much better prior to taking antiretroviral therapy. While it is true that certain medications employed in the management of HIV can evoke troublesome side-effects, they must be viewed in perspective. HIV that is permitted to progress to the stage of AIDS will also be fraught with symptoms and complications – often much worse than medications associated side-effects. Discuss with your physician.

Why is it sometimes necessary to change the medications in my triple therapy?

A significant number of people receiving treatment for HIV will, at some point, during the course of their infection modify or change one or more of the antiretrovirals in their regimen. There are several reasons why medications may be replaced/switched:

• Side effects are a common reason to replace one or more medications in a treatment regimen;
• Virological or immunological failure (the treatment regimen is not successful at suppressing HIV and/or reconstituting the immune system);
• Your viral load becomes detectable after a period when it was undetectable (sometimes referred to as treatment failure) This is confirmed with at least two subsequent viral load tests above the level of detection;
• Your CD4 cells are on a declining trend (confirmed with at least two subsequent lab tests);
• You have symptoms that are not resolving with your current treatment combination.

One or more side-effects
As described in the section : What are the potential side-effects of antiretrovirals ? it is possible that one or more of the medications in your therapeutic regimen are causing you intolerable side effects, and that despite attempts at managing these side effects - you may need to try something new.

Your treatment is no longer effective
Once your viral load has become detectable on at least two different visits, and this despite ideal medication taking (no doses missed or forgotten), it is quite likely that your virus has become resistant to your current combination of medications (please refer to the section: What is medication resisitance?).

In addition, when your CD4 cell counts fall, or you present with symptoms that indicate a progression of your HIV infection - it may be secondary to the development of viral resistance to your medications. (please refer to the section: What is medication resisitance?).

What is medication resistance?

You have likely heard of the concept of bacteria resistant to antibiotics (one of the reasons newer and stronger antibiotics are under development). HIV, as a virus, can also develop resistance to the antiretrovirals devised to impede its reproduction.

The ultimate goal of HIV is to replicate itself and thereby ensure its survival. Antiretroviral medications are devised such that they may block the reproduction process at different levels of replication. In the case of HIV, the replication process is so rapid that HIV regularly makes mistakes when copying itself (these errors are called "mutations"). Resistance arises when newly produced copies of HIV virus equipped with mutations are able to reproduce EVEN IN THE PRESENCE OF MEDS!!

Once your virus has developed mutations that instruct it on how to reproduce in the face of medications, your treatment will no longer be able to suppress viral replication. Your viral load is then able to climb and eventually destroy CD4 cells thus weakening your immune system. In an attempt to avoid this decline in your immune system your physician will most likely recommend that you change your treatment regimen.

Cross resistance
Another problem with respect to the concept of resistance is that of cross resistance. This is when the virus develops mutation(s) and resistance to one particular medication, yet this/these mutations also confer resistance to other medications (usually in the same class of medications). Cross resistance can render many, if not all, of the medications in the class less effective (some classes of medications are more at risk from cross resistance than others).

It is important to note, that while there are a multitude of medications currently available to combine and treat HIV, your first therapeutic combination prescribed is likely your best bet at controlling HIV infection. Initial or first line therapies are often simpler and better tolerated than medication combinations used once mutations and resistance have developed (second and third line therapies). As resistance develops, there are fewer medications available to combat HIV. As patients progress towards combinations intended to overcome resistant virus, there is often the associated disadvantage of increased number of pills, constraints and side effects, etc.

The bottom line: your first line is your best line of therapy!!

What can I do to avoid resistance?

The principle factors responsible for the development of resistance are:

• Difficulties in absorbing the medication (metabolism issues);
• Difficulties in adhesion (taking all the pills, all the time)- sometimes referred to as compliance, fidelity or observance.

Absorption and metabolism

In order that your medications may be effective and active against HIV, they must be digested and absorbed by your body. The medications must get into your bloodstream, via the digestive system (stomach and/or intestines). Once this is achieved the medications need to be modified or "metabolized" by your liver or your kidneys such that they may ultimately exert their action by impeding HIV replication at the level of your CD4 cells.

Some of the more common factors that may have an influence on the absorption and/or metabolism of medications include:

Food and diet: some medications need to be consumed with food, while others need to be taken on an empty stomach (fasting). Some medications have absolutely no dietary restrictions whatsoever. This is important to be aware of, given that food can exert, in certain cases, a significant impact on the absorption and metabolism of many medications. As a result, the presence or absence of food may serve to increase the levels of medications circulating in your bloodstream and may thereby increase the level of side effects. In contrast, some foodstuffs may actually decrease the level of medication in your system thus exposing you to levels inadequate to manage your HIV infection...this creates the ideal environment for the development of medication resistance.

While dietary constraints or restrictions may be a nuisance, when respected to the letter, they serve in the prevention of resistance. It is extremely important to inform yourself as to the dietary restrictions/permissions developed for your particular medications - ask your physician, and review from time to time with your pharmacist...particularly when modifications to your regimen are prescribed.

Vomiting and diarrhea

Given that your medications need to be digested and absorbed along the length of your intestinal tract (stomach and intestines), if you are suffering from nausea, vomiting and/or diarrhea, these symptoms may have a negative impact on the digestion and absorption of your meds - when you are ill, from gastroenteritis, flu, etc.. and can't keep your medications down: speak with your physician and/or pharmacist as to how to manage your particular situation.

Other medications and/or "naturopathic or homeopathic products"

As is the case with certain foodstuffs and medications, there are several medications and/or homeopathic products that can exert a significant influence on the absorption or metabolism of your antiretrovirals. When the absorption or metabolism of a given medication is influenced by another medication or product, this association is termed an "interaction". Many medications, even those sold over-the-counter can have an impact on your anti-HIV medications. In addition, it is important to realize that even though labeled as "natural products", certain homeopathic interventions can cause significant interactions with your antiretroviral medications. As was described with certain food-drug interactions, some of these "natural products" may increase the blood level of your medications (raising the risk of side effects), while others may lower the therapeutic level of your medications (increasing the risk of mutations and eventual drug resistance).

Your pharmacist can assist you in determining the presence/absence of possible interactions between your antiretrovirals and any other medications/products you may be taking...or NEED to take in the future.

Whenever something is added - ensure that a revision of interactions is done - even with over the counter and natural products.

Difficulties adhering to your treatment regimen
It must be stated that while absorption and metabolism difficulties do exist, they are not the principle causes of antiretroviral drug resistance. The primary reason is the difficulty to consistently adhere to the treatment regimen. Missed or forgotten doses permit levels of medications in your system that are unable to completely suppress HIV (sub-therapeutic levels). Sub-therapeutic levels encourage the reproduction, in the face of a small amount of medication. This scenario creates an ideal environment for the development of mutations able to circumvent the medications on board...resistance. It is important to stress the CRITICAL role that you hold in the prevention of resistance. No resistance = a therapy that will suppress HIV indefinitely. One of the greatest challenges facing individuals living with HIV and antiretrovirals is devising a system that ensures 100% medication compliance - not a single dose missed..EVER. Given human nature, this is not an easy task - remembering to take several medications every day...sometimes more than once per day. That being said, compliance to your medication regimen is the key to LONG-TERM control.

Treatment adherence means:

• Taking all of your medication at the prescribed time
• Taking all of your doses, all of the time
• Taking medications at the appropriate times (dosing intervals)
• Respecting all dietary/food restrictions
• Ensure routine medical visits, including laboratory testing.

Can alternative or naturopathic/homeopathic therapies assist me in managing my HIV infection?

When one considers the vast complement of homeopathic or naturopathic therapies as an adjunct to the treatment of HIV infection remember to consult your health-care provider/ physician, clinical nurse or pharmacist, particularly if you are taking medications or antiretrovirals. In addition, one may consider acupuncture, massotherapy, vitamin supplements, mineral supplements, anti-oxidants and various other alternative treatments. Individual or combinations of alternative therapies have assisted many patients living with HIV, at one time or another during the course of their infection. If you are already following a naturopathic/homeopathic treatment regimen – remember that there are several factors to consider such that « you maximize the benefits and minimize the potential risks.

• There exist complementary therapies that actually serve to « stimulate » the immune system. A well-known example is Echinacea. Many homeopathic clinicians extol the virtues of Echinacea’s capacity to stimulate the immune system and thereby assist an individual in fighting off a cold or flu. It is extremely important to be aware that the use in patients living with HIV may be paradoxical. As you learned earlier on in this section, HIV is present (latent) in the immune system. When a product like Echinacea stimulates the immune system, not only is your immune system stimulated, but also the HIV virus itself is also stimulated. This can lead to an unwanted increase in the viral load. In the instance of Echinacea, this naturopathic remedy can actually negatively impact your health status.
• Another important risk factor that must be assessed when a person living with HIV is combining antiretrovirals and complementary treatment interventions is the potential for medication interactions (please refer to the section: Other medications and naturopathic products – « What can I do to avoid the development of resistance? » These interactions can have a negative impact on your HIV therapeutic success and negatively impact your health over the long run. Once again, prior to commencing antiretrovirals, communicate with your physician/pharmacist all medications or therapies that you are taking prior to initiation. If you are already receiving treatment with antiretrovirals and are considering supplementing with complementary therapies speak with a member of your health care team.

There are several complementary therapies that can be beneficial in the management of side effects, or the prevention of other health conditions, however, one must exclude the possibility of interactions PRIOR to starting. Your health care provider can assist you in the selection of beneficial and safe alternative therapeutic choices.

Will I need to take medications for the rest of my life?

The answer to this question is full of subtlety and promise. Several years ago, the answer to this frequent question was simple and straightforward: once a person living with HIV started antiretrovirals it was « treatment for life ». At the current moment in time in HIV research and management, there are exceptions to the rule, however, essentially medications, once started are to be taken for life. Given the young status of the HIV virus and infection (it has only been identified since the 1980’s) research is active and thus is looking at the possibility that therapy may at some point in the future be intermittent.

You may have heard of the expression « treatment interruption » or « therapeutic pause ». Simply put, a treatment interruption refers to stopping antiretrovirals. A treatment interruption may be planned/structured in association with your physician or research team (in the domain of clinical research currently underway into this question) or a decision made alone by the patient. A treatment interruption may last anywhere from days to months. There are a wide variety of reasons why a patient may « require » a therapeutic pause: side effects, the onset of a new medical or psychiatric condition, financial reasons etc. There are moments when a patient may decide to stop therapy: because they are “fed up”, feel overwhelmed or believe that their «body needs a break », etc. Please read thoroughly the following summary of evidence discussing what is known to date about treatment interruptions. Please discuss your individual situation prior to making a decision on your own – your health care provider can assist you in making the best decision for you.

While the scope of this chapter on HIV is not the place to present the entirety of research undertaken to date with respect to treatment interruptions, we will herein discuss some of the major advantages, disadvantages and unknowns:

The potential and known benefits associated with treatment interruptions:

• When a new medical or psychiatric condition is diagnosed in a person living with HIV, there may be negative interactions between the illness and antiretrovirals. A person may also not be in a situation where they are able to continue consistent medication taking. If there is a major interaction or side effect, a therapeutic interruption may serve to improve your overall health (not just HIV) prior to re-thinking your treatment;
• Taking medications on a daily basis IS NOT EASY. Humans in general have a great deal of difficulty with this routine. At times medications may be required for a physical or psychological break;
• A treatment interruption may help – temporarily- to improve a person’s quality of life.
• There was a time in HIV management (not that long ago – 1996-1997) that it was felt that HIV therapy should be started very early on in the course of infection: Hit hard, Hit early was the mantra with the advent of triple combination therapies. In some patients, antiretrovirals were started as per the guidelines established and approved at this time. Current treatment guidelines have changed significantly over the years and some groups of patients may not actually meet the 2005 treatment guidelines. This is a case where a treatment interruption may be indicated. If you feel that you fit into this category (never had CD4 levels below 350, or high viral loads) you may want to discuss your options with your doc.

The potential and known risks associated with treatment interruptions:

• The viral load will increase;
• The level of CD4 cells will decrease;

• ***If the level of CD4 cells fall precipitously low (below 200), you may be at increased risk of developing an opportunistic infection;

  ***It must be mentioned that certain patients who stop therapy and do not actually drop their CD4 cell counts to the 200 levels, may experience symptoms related to HIV. At times patients describe symptoms similar to those experienced prior to commencing antiretroviral therapy;

• On occasion, people living with HIV may experience symptoms that resemble their primo-infection (please refer to the section: Phase 1 – Primo-infection – The 4 phases in the evolution of HIV);
• During a treatment interruption, the HIV virus may acquire resistance to certain medications, thus limiting future treatment options. This is a very undesirable complication of treatment interruption. If a treatment combination is simple and relatively well tolerated and a treatment interruption permits the virus to acquire resistance (the ability to « get around the medication »), future antiretroviral combinations may not be as simple;
• While perhaps a minor problem for some, the re-initiation of antiretrovirals (after a therapeutic pause) may provoke the same side effects as those that were experienced during the initial treatment period.

In an attempt to decrease the risks associated with treatment interruptions:

• TALK, TALK AND ASK QUESTIONS! Discuss with your physician your intention to stop your medication. You are an individual and your therapy has been tailored to YOU. Your doc can guide you as to the advantages and disadvantages specific to your health status…ideally before a treatment interruption;
• Please ensure that you fully understand both the advantages and risks associated with a treatment interruption, particularly with respect to your individual health status. This is important when making a clear and well-informed decision;
• Discuss your intentions with your physician such that you may effect your treatment interruption without increasing your risks of developing resistance to your current therapy. As discussed earlier, resistance limits the range of effective medications and may complicate future treatment options. There are several medications that are eliminated from the body at a slower rate than others. This concept is important when discussing the idea of treatment interruptions, as some combinations of antiretrovirals need to be stopped all at once when a treatment interruption is planned, while others need to be stopped earlier/later or switched prior to a full interruption. Communicate and plan it with your doc!
• It is important to schedule regular clinical appointments when on a treatment interruption. Your immune profile and viral load measurements will be taken more frequently thus evaluating the progression of your infection and its impact on your immune system (CD4). A close follow-up will assist you in avoiding a rapid or severe decline of your CD4 thus keeping you out of the danger zone (CD4 < 200);
• Discuss with your physician when you would be ready to restart a therapeutic regimen and how to go about it when the time arrives;

In conclusion, it must be stated that the idea of treatment interruptions is quite controversial. A great deal of research studies have been completed and are still underway with the intention of trying to better understand the potential advantages and risks (both short and long-term) associated with treatment interruptions. If one takes into consideration everything that we have learned to date, a great deal of prudence must be used when approaching a treatment interruption. While it works safely for some, it is not always a success for others. Once again, the risks of side effects, symptoms associated with HIV viral rebound and the risk of medication resistance and its potential to complicate future treatment options are all reasons why a treatment interruption should not be taken lightly. The best way to approach this question is to talk with your physician and pharmacist and put everything into perspective with respect to YOUR HEALTH STATUS.

What can I do to stay in good health?

The answer to this question is not complicated. In fact, whether sero-positive or sero-negative the answer to this question is the same. It is all about lifestyle issues, and you probably already know what is important, but here are a couple of simple principles to assist you in the promotion of your general health:

• A well-balanced diet that includes all the different food groups;
• Eat regular meals at regular intervals (don’t skip meals);
• Regular exercise, particularly cardiovascular or aerobic exercise is good for both the body and the mind;
• Take care of the mind – don’t ignore psychological issues (if you need assistance speak to your physician about resources – stress management, counseling, therapy, etc;
• Get a good nights sleep – listen to your body, we all have different requirements;
• Quit or cut down on your smoking habit (this is a big one);
• If you consume alcohol, do so in moderation and enjoy;
• If you consume recreational drugs – do so in moderation and play safe (some recreational drugs may interact with antiretrovirals and you may have to be careful to avoid complications). Speak with your physician/pharmacist for up-to-date info on drug-drug interactions;
• Prevent common infections via vaccination: yearly influenza vaccination, pneumonia vaccination, hepatitis A and B vaccination;
• Protect yourself from sexually transmitted illness (play safe!);
• Ensure a regular follow-up for HIV, routine testing for sexually transmitted illnesses and routine age-appropriate tests with respect to your general health (apart from HIV).

As you can see from the partial list above – YOU NEED TO TAKE CARE OF YOURSELF!

What should I do if an accident arises during sexual intercourse (condom breaks or tears)? Post-exposure prophylaxis (PEP)

In the real world, it is possible that an event may occur (primarily via sexual contact) whereby your sexual partner is exposed to the risk of transmission of HIV. When a condom breaks during sex, there is the moment of panic…understandably so! Currently, the use of « post-exposure prophylaxis » (PEP) is under study and offered in the event of a « high-risk » event. The approach is similar to the approach used when a health care provider is exposed via a contaminated needle in the work place. The goal is to prevent HIV infection.

In theory, when HIV enters the human body, it remains circulating free in the blood for several days (24-72 hours) prior to its insertion into body reservoirs (lymph nodes, brain, testicles, etc.) PEP is initiated with the intention of PREVENTING HIV from integrating itself into the body and setting up a chronic infection. This is NOT a morning-after-pill, but a carefully selected combination of three medications taken for a full MONTH. This concept is still under research and should not be considered a guarantee in the prevention of HIV infection.

If a risk situation was to occur, your partner should:

• Consult a physician as quickly as possible (ideally within 24 hours, and definitely before the 72 hour mark post-exposition). The earlier the better in maximizing the success of this intervention when medications are indicated;
• Ideally, the individual at risk should consult a physician experienced with the principle of PEP – and ideally you should assist your partner in obtaining all pertinent information regarding your health status (CD4 levels, viral load levels, any resistance information with respect to your virus and your current medications). All of this information will assist the physician in selecting the best PEP combination.

The physician will:

• Evaluate the degree of risk for HIV/other sexually transmitted infections;
• Baseline laboratory studies will be taken so as to evaluate the health status of your partner at the moment of the exposure/risk. When indicated, as mentioned above, a combination of antiretrovirals (not always the same as the ones you are taking) will be prescribed for a period of one month. Current recommendations suggest triple medication combinations for PEP of this sort;
• Schedule several follow-up visits to evaluate the tolerability of the selected medications, to rule out serious side effects and to evaluate the outcome of the PEP, at one month and 3 months post-exposure.

While not a guarantee, it is important to know that PEP exists, that there is something that can be done and that may serve to reduce the risk of transmission of HIV when a risk event occurs.