Contents

Common Tests

Opportunistic Infections

Antiretrovirals

Managing Your Medicines

Doctor Patient Relationship

Understanding Common Symptoms

 

Why Should I Learn More?

As a person with HIV, you may wonder why it is important to know about the medical aspects of AIDS when you have a whole health care team who can answer any questions you have. This is a good question. There are several answers.

• To help you understand your treatment options
• To help you become more active in your treatment options
• To give you the background necessary to ask questions that are relevant to your health care
• To help you understand what tests are being done to you and why

The more knowledge you have the more comfortable you will feel with your treatment and health care team. The more comfortable you feel, the more likely you will ask questions and take part in the management of your medical care. Moreover, taking part in your medical management will give you a sense of control and empowerment over your diagnosis.

Common Test

CD4+ Cell Counts

CD4 cells are white blood cells or lymphocytes that help manage your immune system. The CD4 or helper T-cell count is a test that measures the number of CD4 cells in your blood. Normal CD4 counts range from 500 - 1,200 cells per cubic millimeter of blood (less than a teaspoon). Depending on the number of CD4 cells you have your doctor will recommend that you get a CD4 count every 3 to 6 months.¹ The test is used as an indicator of the strength of your immune system. If your CD4 cells drop to certain levels your doctor may start medicines to prevent infections. This is called prophylaxis.

Remember that old saying "An ounce of prevention is worth a pound of cure?" Well, prophylaxis is an "ounce of prevention." It is medical treatment done to prevent infection from opportunistic infections like MAC, PCP, CMV and toxoplasmosis (more on these later). Studies have shown that when your T-cells drop below a certain number (usually 200) your chances of developing an opportunistic infection are greater.²

To have confidence in the accuracy of your CD4 cell count, your blood should be drawn more than once, preferably at the same time of the day and tested by the same laboratory. There may be differences in the counts due to the time of day (usually they are higher in the afternoon); you might be just getting over an illness; and sometimes there can be variations in the testing equipment (it must be properly used and in good working order). There may also be fluctuations due to changes in your daily routine such as rest, nutrition, and exercise. CD4 counts are not absolute indicators of health, so the trend over a period of time is a better indicator than the result of one test.²

Viral Load

The viral load measures the amount of HIV RNA (see Chapter II) in your blood. The test measures how actively HIV is replicating in your body. The higher the amount of viral RNA the more active HIV is. These test results are good indicators of disease progression in HIV infection. Studies have shown that a high viral load correlates with disease progression and death. The viral load combined with the CD4 cell count gives a clear picture of your health and your response to medical treatments. These tests will let you and your doctor know if the antiretroviral medications you are using are working. ³

The viral load test result is given in copies of HIV RNA. For example, a test result might be 100,000 copies per milliliter of blood.

Every time your viral load drops one digit, your viral load has dropped "one log." For example going from 60,000 copies/ml to 6,000 copies/ml. This is called a one log drop, while a two log drop would be going from 60,000 copies/ml to 600 copies/ml.

A significant change in viral load is to have your viral load drop or increase by a minimum of a half of a log. A half of a log is the same as an increase or decrease tripling effect. For example, an increase tripling effect would be going from 60,000 copies/ml to 180,000 copies/ml (60,000 x3 = 180,000). While a decrease tripling effect would be going from 60,000 copies/ml to 20,000 copies/ml (60,000/3 = 20,000).

The goal of antiretroviral therapy is to have your viral load drop to "undetectable." The tests that are currently being used can only measure the amount of viral RNA to a certain minimum level. So, test results below the sensitivity of the test are called "undetectable." This does not mean that there is not HIV in your blood. Instead, what this means is that the amount of viral RNA in the blood is lower than the sensitivity of the test used (so, even if your viral load is undetectable you still need to manage your health for wellness and practice safer sex).

The Association Between Viral Load, CD4 Count and AIDS Diagnosis

Blood levels of HIV RNA show how active HIV is and the associated rate of CD4 cell destruction. CD4 counts measure the amount of damage already done to the immune system by HIV. These tests together show a patient’s risk of progressing to an AIDS diagnosis. Chart 1 shows the likelihood of developing AIDS within 3 years. The chart is based on actual data from the Multi-centered AIDS Cohort Study . The chart shows that your chances of being diagnosed with AIDS is much more likely if your viral load is greater than 30,000 copies/ml and if your CD4 count is less than or equal to 200 cells/ml. Interestingly, your chances of progressing to an AIDS diagnosis within three years decreases dramatically as your viral load drops. For example if your viral load is equal to or less than 500 copies/ml and your CD4 count is equal to 200 or more, your chances of progressing to an AIDS diagnosis approaches zero. This data supports the importance of correctly taking your antiretroviral medicines.

 

Liver and Kidney Function Tests

The kidneys and liver are two of your "vital organs." They perform vital functions which keep the body healthy. These two tests are used to determine the health of your liver and kidneys. The tests look for certain substances in your blood which indicate that the liver and/or kidneys are not working properly.

The liver helps metabolize (break down) fats, carbohydrates, and proteins by secreting enzymes into the gut. Elevated liver enzymes can be a sign of disease, toxicity, injuries, and some opportunistic infections. Some of the enzymes that are monitored are aspartate amino- transferase (AST or SGOT), alanine aminotransferase (ALT or SGPT), lactate dehydrogenase (LDH), gamma-glutomyltransferase (GGT), alkaline phosphatase and bilirubin (see Appendix for normal test ranges).

The kidneys help eliminate certain substances which are by-products of normal biological functions in your body. When these substances are circulating at high levels in the blood it could mean that your kidneys are not working properly, that you are dehydrated or some other dysfunction of the kidneys. Two common substances measured are blood urea nitrogen (BUN) and creatinine.⁴

A variety of other tests are performed to evaluate your health (see Appendix for more detailed information).

Opportunistic Infections (O.I.)

Because HIV infection weakens your immune system, you are vulnerable to opportunistic infections. The micro-organisms which cause these infections use the opportunity of a weakened immune system to grow in your body, causing infection which can be very serious. The following are brief descriptions of opportunistic infections commonly associated with HIV. They are all "treatable" if detected early. The main thing to remember about these opportunistic infections is to "catch" them early and to seek aggressive and continuous medical treatment. While there is no cure for HIV there are medicines available to control and sometimes cure complicating opportunistic infections (see Appendix for O.I. chart). If you would like more detailed information on treatment and/or prevention of O.I.s ask the health educator for a "Fact Sheet."

PNEUMOCYSTIS CARINII PNEUMONIA (PCP): PCP is the most common of the life threatening opportunistic infections in people with AIDS. PCP is caused by a protozoan, a one celled organism, that is common in soil, houses, offices and just about everywhere else. In people with healthy immune systems, it causes no problems. In people with CD4 counts below 200, however, it can multiply quickly in the lungs, causing pneumonia. People with PCP usually present with gradual onset of fevers, dry cough, and shortness of breath especially with exertion. PCP can be prevented by taking Septra (Bactrim), Dapsone, Atovaquone or Pentamidine.^5,2

TOXOPLASMOSIS: "Toxo," as it is often called, is a parasite that primarily infects the brain, and sometimes the heart or lungs. Its symptoms are fever, weakness, confusion, seizures, dizziness, and headaches. The toxoplasma organism is a protozoan. Most people have been exposed to it, and many people carry the inactive form in their body. When the immune system is compromised (usually CD4 count less than 100), the organism can flourish, causing disease. Some common ways the disease is transmitted are through cat feces and soil, so you should avoid cleaning cat boxes or digging with your hands unless you are wearing gloves. It is possible to prevent this disease with drugs (Septra), but the organism is not completely destroyed. Treatment of toxoplasmosis is very effective if started early. Individuals at risk for toxo can be screened with a blood test.^6,2

CRYPTOSPORIDIUM: This is another protozoan infection that can infect anyone but causes severe disease in patients with CD4 count less than 100. Commonly found in farm animals, cryptosporidium can cause severe diarrhea. The diarrhea can last for months. Diarrhea this severe results in weakness, and can result in death because of fluid loss. Cryptosporidium has been found in tap water, so some experts recommend that you avoid drinking tap water or boil it before drinking.⁷ There is no treatment of proven benefit for cryptosporidium, but the infection often gets better on effective antiretroviral therapy.

MYCOBACTERIUM AVIUM COMPLEX (MAC): MAC is caused by two similar types of bacteria that are related to tuberculosis (TB) -- they are Mycobacterium avium and Mycobacterium intracellulare. Like TB, it often infects the respiratory tract, but was very rare before AIDS. If it is present only in the lungs, it is not enough to qualify as an AIDS diagnosis. Anywhere else in the body, though, indicates AIDS. The most common symptoms are extreme weakness and wasting, which may be accompanied by symptoms like high fever, diarrhea, and stomach ache. MAC occurs in people with very low CD4 counts (less than 50). This infection is prevented by taking either Azithromycin or Clarithromycin and treatment of MAC is often very successful.^8,2

CRYPTOCOCCAL MENINGITIS: This type of meningitis is caused by a fungus that infects the meninges, the covering of the brain and spinal cord. It is usually found it patients with a CD4 count less than 100. Like most other diseases that have Central Nervous System (CNS) involvement, it can cause headaches, dizziness, and confusion. Other symptoms are blurred vision, nausea, memory loss, seizures, fever, and speech difficulties. Cryptococcal meningitis can be prevented by taking Fluconazole (Diflucan) and treatment for cryptococcal meningitis is very effective if started early. The Cryptococcus organism can also infect other parts of the body.⁹

PROGRESSIVE MULTIFOCAL LEUKOENCEPHALOPATHY (PML): PML is caused by a virus that infects the brain. It can cause damage to the white matter of the brain, and can result in memory loss, motor control problems, seizures, and mood changes and other Central Nervous System problems. There is no known treatment for PML, but some patients with PML have stabilized or improved with antiretroviral therapy.³²

CYTOMEGALOVIRUS (CMV): CMV is a common viral infection. CMV is a member of the herpes family of viruses. Half the population has had CMV at some time, and over 90% of gay men have had it. It is passed through sexual activity. Usually it is asymptomatic or causes mild flu-like symptoms. In someone who is immunologically depressed, it can infect almost any organ system and cause serious disease. If it infects the liver, it can cause hepatitis, in the lungs it can cause pneumonia, and in the eyes it can lead to loss of sight. By itself, CMV is immunosuppressive. It is spread readily through semen, urine, or saliva, so it is common as a Sexually Transmitted Disease. It is suspected of being a significant co-factor in the development of AIDS.^10,2 Several medications are available to treat CMV. Oral ganciclovir is used to prevent CMV reactivation in high risk persons.

Other Related Diseases

There are several other diseases that are associated with HIV because their presence may indicate some immune depression.

PELVIC INFLAMMATORY DISEASE (PID): PID, a sexually transmitted disease, is caused most often by untreated gonorrhea and chlamydia. PID is an infection that affects the reproductive organs of women (vagina, cervix, uterus, fallopian tubes and ovaries). Symptoms include lower abdominal pain, fevers, pain during sexual intercourse, and vaginal discharge.¹¹ PID is a common illness of sexually active women, but among HIV infected women it is often more severe. Antibiotics specific to the cause of the infection are used to treat PID.

NEUROLOGICAL COMPLICATIONS: HIV has the ability to infect the cells of the brain and the spinal cord and may produce many of the symptoms of some of the opportunistic diseases. These include motor control problems, memory loss, mood swings, seizures, confusion, dizziness, and headaches. It is very difficult to diagnose direct neurological (brain, nervous system) disease as a result of HIV. Effective antiretroviral therapy, especially with drugs that get into the nervous system, often improves some of the symptoms due to HIV infection of the brain.¹²

KAPOSI'S SARCOMA (KS): KS is a cancer of the connective tissues that support blood vessels. It is usually referred to as a skin cancer because of the visible lesions it produces just under the skin. However, KS can also involve the lungs and other internal organs. It is characterized by spots that can range in color from pink to purple to brown, depending on skin color. The spots, or lesions, can be anywhere from 1/8 inch across to the size of a silver dollar and are usually irregular in shape. They can grow in size and may sometimes grow together at the edges. They usually do not hurt or itch, although either sensation may occur as the lesions progress. Because KS is a cancer, it is not considered an opportunistic infection. Early on, KS was the second most common illness experienced by people with AIDS, but it is becoming less common. KS most often occurs as lesions visible on the skin, but it can occur in the nose, eyelids, mouth, rectum, or anywhere internally, especially in lymph nodes.^13,14 A new virus called KSHV is sexually transmitted and may be a necessary cause for development of KS. Treatment for KS has improved greatly over the past few years.

TUBERCULOSIS (TB): TB is a disease caused by an air-born bacterium. Anyone can become infected with TB bacteria, but people with HIV/AIDS are at greater risk of getting sick from TB (active TB). Only people with active TB are infectious. General symptoms of active TB include cough, fever, fatigue, night sweat, and weight loss. TB can occur anywhere in the body, it is, however, most common in the lungs. Pulmonary TB (in the lungs) will produce a chronic (last a long time) dry cough.¹⁵ TB is treated with multiple drugs. Typical treatment includes Isoniazid, Rifampin, Pyrazinamide, Ethambutol and Pyridoxine .

HERPES: Herpes Simplex I and II are viruses that cause small sores on the lips, genitals, or anus and are very common. People who have weakened immune systems, who were also previously infected with the herpes virus, can experience more frequent outbreaks of the disease that are slower to heal. Herpes is spread through sexual contact even when there are no active skin lesions.¹⁶ Herpes can be prevented by using a latex barrier (condom or dam) for all sexual activity. Acyclovir is used as both prophylaxis and treatment of herpes.

PERSISTENT LYMPHADENOPATHY: Any time an infection occurs, some lymph nodes swell up, usually the ones nearest the infection (lymph nodes are located in all parts of the body). After a bad infection, these nodes may stay swollen for several weeks. Persistent lymphadenopathy is usually defined as lymph nodes that are chronically swollen for more than six months in at least two locations, not including the groin. The lymph nodes might be sore or visible externally, but this is not always true.

AIDS RELATED NON-HODGKINS LYMPHOMA (NHL): Lymphomas are cancerous tumors of the lymphatic system (part of the immune system). NHL is the most common lymphoma that affects people with HIV. NHL occurs when the body’s B-cells start growing and dividing abnormally causing tumors to develop. In people with HIV, NHL often occurs outside the lymphnodes, including the liver, bone marrow, stomach, brain, mouth and anus. Swollen lymphnodes, fever, and night sweats are the most common symptoms of NHL.^17,18 Radiation and/or chemotherapy is used to treat lymphoma.

CERVICAL CANCER: Cervical cancer is a malignant growth on the cervix (the opening to the uterus). It is believed that cervical cancer is caused by the Human Papilloma Virus (HPV), which is sexually transmitted. Cervical cancer starts slowly with just a few abnormal cells on the cervix. This is known as dysplasia. The few cells, if untreated, grow into a tumor. It can spread to the reproductive organs (ovaries, vagina, uterus) of the patient. HIV-positive women are more likely to experience dysplasia. Dysplasia occurs more frequently in women with CD4 counts below 400. It is recommended that HIV-positive women get a pap smear every six months to detect early abnormal changes before cancer develops.¹⁹ Treatment of cervical cancer usually involves surgery or radiation therapy. Small cancerous growths are removed by a surgical procedure known as a "cone biopsy." If the cancer is extensive a hysterectomy is performed. If the cancer has spread beyond the cervix radiation treatment is performed.

THRUSH: Thrush is a yeast infection in the mouth caused by an organism called Candida albicans. Candida is a normal micro-organism that resides in small numbers in the gut with many other organisms. During periods of lowered immunity, Candida sometimes flourishes and causes infection in other parts of the body. It usually occurs in the vagina, skin, mouth, and esophagus. Taking antibiotics also makes one prone to this fungal infection.^20,21 Medical treatment and prevention involves anti-fungal medications like Diflucan or Ketoconazole.

HAIRY LEUKOPLAKIA: Sometimes mistaken for thrush, hairy leukoplakia is a white patch that appears under the sides of the tongue. It is usually thicker than thrush and also cannot be scraped off. It is called "hairy" because of its appearance, which is like wet cotton or velvet. In some people, it may disappear after a while. It is caused by a combination of two viruses living together (Epstein Barr Virus and Human Papilloma Virus). It is a strong indicator of HIV infection, but is generally harmless.³² Treatment, if necessary, is done with acyclovir.

SHINGLES: Shingles is caused by the same virus that causes chicken pox: Herpes zoster. After a bout of chicken pox, usually at a young age, the virus retreats into the nervous system where it lies dormant. It can re-emerge during periods of high stress and depressed immunity. It is usually a disease seen in older people whose immune systems are declining. It has recently been seen in many young or middle-aged people who are at increased risk for AIDS. The disease causes painful skin lesions, most commonly in bands around the torso, following the lines of the nerves.¹⁶ Shingles is not life threatening and inevitably cures itself. It can be treated with acyclovir, famciclovir or valaciclovir. Other drugs such as nortriptyline may be given to control pain.

IDIOPATHIC THROMBOCYTOPENIC PURPURA (ITP): ITP is a condition where the body produces antibodies against its own platelets, which are blood cells that cause blood clotting. The primary symptom is easy bruising, although blood in the stools, bleeding gums, or slow healing of wounds can also be warning symptoms. ITP can be caused by many things and may not be AIDS-related.³² Treatment of ITP usually consists of corticosteriods that suppress the antibodies that attack the platelets.

OTHER INFECTIONS: HIV-infected people often have other persistent minor infections that can be attributed to a compromised immune system. These include skin rashes, sinus problems, itching, or blisters.

Antiretrovirals

Because of extensive research, there are over a dozen drugs or medications already approved by the FDA (Food and Drug Administration) for use by physicians for their HIV patients. Most act as inhibitors; that is, they slow the reproduction of the virus. These drugs are targeted at HIV, which is a retrovirus. You may hear the term "antiretroviral" therapy when discussing medical management of HIV. The word anti means "against" and retroviral refers to viruses like HIV, thus "antiretroviral" means "therapy against retroviruses." Decisions on when to start therapy are based on many factors, including, but not limited to your CD4 count, viral load, symptoms, and your physicians knowledge of your medical history.^22,23

Nucleoside Analogs

Treatment approaches have relied heavily in recent years on a class of drugs known as nucleoside analogs. In the United States, physicians may prescribe seven nucleoside analogs - the common names for these drugs are: AZT (Retrovir, zidovudine); ddI (Videx, didanosine); ddC (Hivid, zalcitabine), d4T (Zerit, stavudine); 3TC (Epivir, lamivudine), Ziagen (Abacavir), and Retrovir+Epivir (Combivir).

In order to properly infect and take over the cell, HIV needs to change its genetic material (RNA) to match the genetic material of your cells (DNA). Genetic material RNA or DNA is made up of groups of molecules called "nucleosides." The word "analog" means similar in structure or function. So, these drugs match the nucleosides of genetic material (RNA or DNA). This allows these drugs to bind to the RNA of HIV and interfere with the viral DNA building process (transcription). Therefore, the viral DNA that is made in the presence of a nucleoside analog (like AZT) is incomplete and unable to make new copies of viruses.^23,24

Protease Inhibitors

Recently, a powerful new class of drugs called protease inhibitors have begun to play a role in treatment approaches. These drugs work at the last stage of the virus reproduction cycle. They prevent HIV from being assembled and released from the infected T-cell, by inhibiting an enzyme called a proteinase which HIV uses to do these functions. There are five protease inhibitors which can be prescribed. They are saquinavir (Invirase, Fortovase), indinavir (Crixivan), ritonavir (Norvir), amprenavir (Agenerase) and nelfinavir (Viracept). Protease inhibitors can greatly reduce the number of new infectious copies of HIV released from cells.^22,25

Non Nucleoside Reverse Transcriptase Inhibitors

Another class of antiretroviral drugs are called non-nucleoside reverse transcriptase inhibitors (NNRTIs). These drugs stop HIV production by binding directly on to reverse transcriptase and preventing the conversion of RNA to DNA. They work at the same stage as the nucleoside analogs, but through a completely different mechanism. The three NNRTIs that can be prescribed are delavirdine (Rescriptor), nevirapine (Viramune) and Sustiva (Efavirenz).²⁴

Drug Interactions

Very often different drugs when taken together can act in a way that can be harmful to your health. For example, some medicines can lower the amount of protease inhibitor absorbed by your system, while others can stop certain antiretrovirals completely. Check with your doctor or pharmacist before you begin any new medications. Providers who are not HIV specialists may not be aware of all the drugs that when taken together can be harmful to your health. It’s also a good idea to take a list of all your medications with you to your medical appointments so that new treatments can be planned safely, without risk of harmful drug interactions.

Drug Side Effects

Side effects are common with most medications and can range from mild to severe. Most of the antiretrovirals produce some side effects in about 20% of the people who take them. Although side affects are not pleasant to experience, it is important for you to know three things about side effects:

1) You may or may not experience any side effects.

2) Many side effects will go away as your body adjusts to the medication.

3) Most side effects that your body can’t adjust to will go away if the medicine is stopped.

This is why it is important to discuss the side effects of any new medications with your doctor or pharmacist. Your health care provider can tell you what you might experience. With this knowledge, you can take the necessary actions needed to help you manage or lessen the side effects associated with the medications you are taking. It is important to keep your doctor informed about any side effects you experience with your new medications. He or she can help you manage your side effects by changing medications, lowering the dose, prescribing other medications to alleviate the side effects, or by giving you tips on how to manage your side effects. Tips on how to handle these side effects are given in the chapter on Nutrition and in the chapter on Exercise, Stress Reduction and Complementary Therapies.

Drug Trials

There are other experimental drugs being tested in drug trials. A drug trial or clinical trial is a scientifically controlled study to see if a drug or combination of drugs works in people. The information from the drug trials is used to get FDA approval. It takes a long time for a drug to be approved by the FDA. Once the drug is approved, it can be prescribed by your doctor. Clinical trials have rules or "protocols" which have to be met to ensure that a drug is safe for the participants and that there will be no serious side effects. It is important to be aware of the risks, as well as any possible benefits of participating in the trial.²⁶ For more information about clinical trials, you can call the AIDS Clinical Trials Information Service (ACTIS) at 1-800-TRIALS-A (1-800-874-2572), UCSD’s Treament Center 543-8080 or UCSD’s HIV Neurobehavioral Research Center 543-5000. The decision to be on a trial should also be discussed with your doctor before you begin the study.

Combination Therapy

Most experts agree that it makes sense to combine different classes of drugs. As an example, protease inhibitors can be used in combination with drugs that attack HIV at different stages of its replication process. Studies have shown that three drug combinations of antiretrovirals are more effective than one drug used alone or two drug combinations in preventing disease progression. The goal behind combination therapy is to keep the viral load as low as possible, for as long as possible. It is still too early to tell which combinations will work best. The best combination for one person may not be the best for another. It is important to remember that individuals will differ from others not only in how well a particular combination works for them, but also in what side effects may develop. Ideally, your combination therapy should include two drugs you haven’t taken.²⁷ Other things to keep in mind:

• How many pills will you have to take?
• Which antiretrovirals have you taken previously?
• What are your options if your combination therapy stops working?

These are concerns you will need to discuss with your doctor in order to make a choice that you feel you can stick to.

Drug Resistance

Understanding drug resistance is very important in the management of your HIV/AIDS diagnosis. Drug resistance occurs when a mistake or mutation occurs as HIV makes copies of itself. These mistakes will make each strain of HIV slightly different. The more copies being made, the greater the chance of mutations happening. The fewer copies being made, the smaller the chance of mutations happening.^28,29 HIV produces billions of copies of itself every day, so the likelihood of mutations happening is high.

The drugs that we have currently work on two enzymes HIV uses in reproduction, namely reverse transcriptase and proteinase. The following is an example of how resistance occurs: As HIV is reproducing, a mutation might occur. This mutation might occur in the proteinase enzyme making it slightly different than before. This slight difference might make the protease inhibitor being used ineffective, so the reproduction for this new HIV strain is not inhibited. The drug resistant strain continues to reproduce making more of itself because it is now resistant to the protease inhibitor. The protease inhibitor continues to work on the "old" HIV or non-resistant strain in the body. The new strain of HIV will eventually be the dominate strain in the body, and it will continue to reproduce until it reaches numbers that will lead to disease progression.^29,30 Also, resistance to one antiretroviral can cause resistance to antiretrovirals you have never taken.

However, if we can keep the amount of virus in the body very low the chances of drug resistant mutations happening are very low. The only way to ensure that the viral load remains low is to keep a constant flow of medicine in your body. If you skip, miss or incorrectly take doses of your medications you, in a sense, give HIV the opportunity to pick up its reproduction rate, thereby increasing the likelihood of developing a drug resistant HIV strain in your body. This drug resistant strain will continue to reproduce, unchecked, until it becomes the dominate strain and will begin to create illness. But you can prevent this from happening by taking your medications as prescribed.^30,28

These new drugs, although not for everyone, can give you the advantage over your HIV infection. The key thing to remember is that you hold all the control, because only you can guaranty that you are taking the medications as prescribed. Your health care team members can tell you how, when and why to take your antiretroviral medications. They can give you tips on how to incorporate taking them into your routine, but only you can swallow the pills as prescribed.

Taking Your Medicine

Successful treatment of your AIDS diagnosis requires that you take an active role in adhering to the medication treatment prescribed for you by your doctor. Taking multiple pills at varying times of the day and evening can be tricky and even difficult to manage. Yet, you are capable of putting together a plan that will help you adhere to the prescribed treatment. Here are a couple of pointers to keep in mind when you are taking medications.^40,41,31

• Know the side effects of the medication, so you know what you might experience and how to manage your way around the side effects. For example, if nausea is a side affect you know from the Chapter on Nutrition how to work around it. Remember, most side effects will eventually disappear or at least improve as your body adjusts to the medication(s)
• Ask your doctor questions about the medication, how to take it, when to take it, for how long, etc., if you know this information you will be more likely to take the medication correctly
• Find out what the medication is supposed to do and how it works in your body, if you know why you are taking the medication you will be more likely to adhere
• Find out the brand name and generic name of your medication, for example Crixivan (brand name) is the same as Indinavir (generic name). This is important to help avoid confusion when taking your medications.
• Ask about drug to drug and food to drug interactions. Some foods and medications can work against each other or worse cause toxic effects in your body when taken together.
• See the Owen Clinic Pharmacist to help you design the best regimen for you.

For some people with HIV, remembering when to take their medication is a problem. Reminders are needed. This is where creativity comes in. The main thing to remember is to schedule your medicine with something you do on a regular basis. Here are some tips to help you plan and mange your medication schedule:^40,41,31

• Taking into consideration your daily activities, develop a schedule of when to take your medication, post it where you can see it and stick to it.
• Perhaps you watch a lot of television. You could take your medication after your favorite TV programs, for example, before the morning news program, before your favorite soap opera, or after your favorite talk show.
• Set your alarm clocks and watches to remind you of when to take your medications
• Post reminders on their refrigerator doors, TV, and bathroom mirrors.
• Buy a weekly/daily pillbox from the drug store. Use the pill box to sort out all your medications for the week/day
• If you live with other people ask them to remind you to take your medications
• Anticipate potential problems and solve in advance. Before you begin or change regimens think about potential barriers and brainstorm at least three solutions with friends, your doctor, pharmacist or anyone on your healthcare team. Planning for potential problems will increase your success
• Keep a diary. Include in your diary when you took treatment, reason for missed dose, how you feel, your viral load and CD4 count. Keeping a record serves as a reminder of how well or poorly you are doing with adherence. It can also help provide you with information for problem solving by tracking side effects, re-occurring problems, and problematic situations
• Create a support system. Network with other patients to find out how they are able to be successful with their adherence. Develop support networks to help you with your emotional needs too.
• Stay on track. Don’t intentionally miss or skip doses. If you miss a dose get back on the program as soon as possible. For example, if your evening dose is at 11:00 p.m. and you fall asleep at 9:30 p.m. and wake up at 2:00 a.m. take your medication at 2:00 a.m. and stay on your schedule.
• Refill your prescriptions at least one week ahead.
• Properly store an emergency "stash" of your medications in case of unforeseen circumstances cause you to run out. Rotate or replace your "stash" once a month. Keep an afternoon "stash" at work in case you forget to take your afternoon dose with you.
• Make a dosing schedule. In it would be: the name of your medication, how often you take it, the dosage, the dates you take each dosage. Post this some place where you can see it (see the example below).

A dosing schedule can be used to fill a weekly pill box or posted as a reminder of when and what medications to take. Below is an example of a dosing schedule. The schedule includes: A combination therapy of Viracept, Epivir, and d4T, Acyclovir for is herpes, Septra for PCP prophylaxis, Zithromax for MAC prophylaxis, Diflucan for treatment of thrush and Promethazine to help with nausea or vomiting. You can use the forms at the end of this chapter to create your own dosing schedule.

The important thing is to make taking your medications part of your daily routine. If it is part of your routine (before, after, during) some activity you do then you will be more likely to adhere. If you can successfully take your medications as prescribed for 21 days it will develop into a habit.

The Provider-Patient Relationship

The relationship you forge with your health care provider is vital to successfully managing your HIV/AIDS diagnosis. There are many different styles of relationships and you need to pick one that works best for you and your provider. You may find that a collaborative relationship where you and your provider make choices together works best or you may prefer your provider to take an authoritative role (make all the decisions for you). It’s up to you.³²

Discuss the type of relationship you would like to have with your provider to see if he or she is open to it. Before you do this, ask yourself, "what kind of provider do I want?" Do you want a gay provider, female provider, one who makes decisions for you, one who helps you make decisions, one who is willing to let you try complimentary treatments, one who understands your cultural background? This will help you become clear on what type of provider you will be most comfortable with. Here are some steps you can take to help you forge a relationship based on mutual respect.^32,33

• Educate yourself about the basics of your diagnosis. Your time with your provider is limited and reviewing the basics is not a good use of his or her time
• Show up prepared. Write down all your questions and concerns prior to your appointment. This will ensure that you don’t forget important things that you want to discuss with your provider
• Discuss your treatment options with your provider
• Ask your provider to explain to you why he or she has prescribed a particular treatment or denied a particular treatment request
• If you are not comfortable with a treatment prescribed by your provider ask him or her if there are other options; this also holds true if he or she denies your treatment request
• Let your provider know about all the prescription and non-prescription medications you are taking, including experimental medicines, herbs, vitamins and over the counter drugs
• Keep your appointments and get tests done even if you don’t feel sick. Regular appointments will help give you and your provider a clearer picture of your health and give your provider a better chance at diagnosing any infections early
• Be honest with your provider. Don’t keep any information from him or her. Your provider needs to know about other treatments (experimental, complimentary) that you may be trying as well as any recreational drugs (speed, cocaine, etc.)
• Understand that like you, providers are human. Sometimes they have bad days and there is a limit to what they can do for you

Most providers are sensitive, caring people who are willing to work with their patients. It is important to communicate your feelings and needs to your provider. Don’t be embarrassed. Honor yourself by asking the questions you have, discussing your treatments options, and by letting the provider know how you are feeling.

Symptoms

Learning to recognize and manage your symptoms is part of being a self-manager. In order to do this you must become familiar with some common symptoms associated with illness and when to self treat or go to the doctor. Keep in mind that many infections have the same symptoms. All symptoms should be discussed with your doctor or at least a triage nurse.

Fever

The most common cause of fever is infection. Although you may mostly feel hot when you have a fever, you can also feel cold. It is a good idea to own a thermometer. If you don’t know how to use one have your doctor or nurse practitioner show you how to use one. Your normal temperature should be 98.6° F. See your doctor immediately if your temperature is 101° F or greater and associated with:

• neck stiffness,
• confusion,
• lethargy,
• seizure,
• behavior change,
• dry cough,
• shortness of breath,
• bloody diarrhea,
• rash or skin sores.

Fever combined with any of the above can indicate serious infection like meningitis, PCP or others and should not be ignored.^34,36,31

Call your doctor if:

• your fever is mild (around 99° F - 100.5° F) and lasts for more than two days

Fever Home Remedy

Over-the-counter drugs such as aspirin, Tylenol, Motrin/Advil can be taken to lower the fever. Follow the directions as indicated on the box or bottle. Some people will be advised by their doctor to avoid aspirin-like drugs or drugs like Tylenol. Ask your doctor which types of fever control medications are recommended for your situation. You can also sponge yourself with water. As the water and fever control medicine evaporates it will cool your body

Diarrhea

Diarrhea can be due to infections from parasites, bacteria, or viruses in your digestive tract, side affects from medications, or even HIV itself.

See your doctor immediately:

• if you have black or bloody stools,
• if you have severe abdominal pain,
• if your diarrhea last longer that 5 days,
• if your diarrhea is associated with fevers.

Call your doctor:

• if you believe your diarrhea is associated with new medications or antibiotics,
• if you are experiencing symptoms of dehydration such as lightheadedness, dark urine, extreme thirst, very dry mouth.

Diarrhea Home Remedy

Diarrhea will usually resolve within 5 days. However, a big concern with diarrhea is dehydration and electrolyte imbalances. Electrolytes are minerals like potassium, calcium, and sodium. They need to be balanced, if they are not it can cause illness. Try to drink plenty of fluids like water, sports drinks and juices (avoid juices with vitamin C, as vitamin C can irritate the lining of your intestines). If you are vomiting and nothing will stay down let ice chips melt in your mouth. You can also try the BRAT diet. The BRAT diet is a diet of foods that will naturally constipate you. BRAT stands for Bananas, Rice, Applesauce, and Toast. Avoid fatty foods and dairy products while you have diarrhea, as they may aggravate your stomach. If your diarrhea is a side effect from antibiotics try acidophilus or yogurt with live cultures to replace some of the normal digestive tract flora (mirco-organisms needed to help you digest food).^35,32,36,31

Cough

Cough is the result of irritation due to infection or the presence of foreign substances in the lungs. Anything that damages or irritates the cells in your lungs will cause you to cough. Some common causes of cough are colds, sinus infections and smoking. The inhaled smoke from cigarettes damage the cells and impair your ability to clear infected secretions from the lungs thereby causing irritation. If you are a smoker you might want to consider quitting. Talk to your health provider or see the health educator for more information on smoking cessation. Sinus infections will cause cough because mucous from the sinuses drips down into the lungs. Cold viruses that infect the cells of the respiratory tract will almost always cause cough in order to remove the mucous and phlegm that accumulates during upper respiratory infections.^37,32,36,31

Cough that is producing phlegm shouldn’t be suppressed, as the infectious material needs to be expelled from the lungs.

Two other causes of cough that are of concern to people living with AIDS are PCP and TB. PCP will produce a dry persistent cough associated with fever and shortness of breath. TB infection in the lungs will produce a dry persistent, chronic (last a long time) cough.^31,32

See your doctor immediately:

• if cough is associated with shortness of breath (could possibly be PCP),
• if cough is dry and associated with fever or pain in the chest,
• if cough is producing a thick rusty or greenish mucus (could be sign of serious bacterial infection) or has blood in it.

Make an appointment with your doctor:

• if your cough has lasted more than 10 days.

Cough Home Treatment

Humidifying the air that you breath will help. You can use a humidifier or vaporizer. You can also place a towel over your head while you inhale steam from the vaporizer or steam from a pot of hot water. Drink lots of water. It will help keep your mucous membranes moist and their secretions thinner (thinner secretions can be coughed up easier). Robitussin may help liquefy the mucous, making it easier for you to cough it up and out. You can get relief from dry tickling coughs by using cough lozenges.^36,32,37,31

Nausea and Vomiting

Medications are the most common cause of nausea in people with AIDS. Other causes of nausea and vomiting can be infections. The concern with vomiting and nausea is dehydration and malnutrition. If you are experiencing either of these try to drink as much water or other fluids as possible.

See your doctor immediately:

• if your vomit is black or bloody,
• if your vomiting is associated with fever, steady abdominal pain,
• if your vomiting is associated with headache and stiff neck,
• if you show signs of dehydration (extreme thirst, dark urine, lightheadedness, and very dry mouth).

Make an appointment with your doctor:

• if you are a woman and think you might be pregnant,
• if you have been vomiting longer than three days,
• if your nausea or vomiting starts shortly after you begin a new medication.

Nausea/Vomiting Home Treatment

It is best to continue to eat small, well-tolerated meals if you have nausea. If you can not tolerate foods of any kind, then drink broth. You need to provide your body with some nutrition. You may find that lying down will help alleviate your nausea. If you are vomiting, try to drink small continuous amounts of water and other fluids to avoid dehydration. If you can’t keep any liquids down, suck on ice chips. As your vomiting goes away, begin to eat foods that you can tolerate like soups, as you will need calories to help you regain or maintain your health.^38,31,35

Headache

The most common cause of headache is muscle tension from stress. Headache can also be caused by medications, infections and tumors.^31,39,32

See you doctor immediately:

• if your headache is associated with a fever of 101° F or greater (can be a sign of infection),
• if your headache is associated with a stiff neck (can be a sign of infection),
• if your headache is associated with vision problems, slurred speech, problems moving your arms or legs (can be a sign of central nervous system disorder or infection),
• if your headache is associated with a recent head injury,
• if your headache is the worst one ever.

Make an appointment with your doctor:

• if your headache has lasted longer than three days,
• if your headache is associated with taking any new medications.

Pain and Fatigue

Pain is a sign that something is wrong. You don’t have to live with pain, as it is manageable. Make sure to describe your pain to your doctor as clearly as possible. Is it dull like a toothache? Is it sharp, like a stab? Is it all over, like when you have the flu or just in one place? Is it throbbing, like when you stub your toe? Is it constant, like cramps or does it come and go? The better you can describe it to your doctor the better he or she will be a treating it. Your doctor can help diagnose the cause of your pain and provide you with the means to control your pain. You can also use other therapies like acupuncture to manage pain.^32,36

Fatigue has many causes -- both physical and mental. Fatigue may be a sign that your body is working hard to keep you healthy and that you are not providing it with enough energy (nutritious food) and/or rest. Depression, stress, or other emotions can also leave you feeling drained of energy. Your doctor can help you find the cause of the fatigue by running some tests and doing a physical exam. A good way to avoid fatigue is to eat well, rest enough (take naps if you need too), and to exercise moderately (yes, exercise!). Exercise helps raise your energy level and will prevent your muscles from weakening and shrinking (which can also cause fatigue).^32,36

It’s important for you to listen to your body and take your symptoms seriously. It is common for people to ignore symptoms. As a self-manager you will need to listen to your body and report your symptoms to your doctor. If you keep your doctor "in the dark" about how you are feeling you can make it difficult for your doctor to treat you. Remember, you and your doctor are working together to create optimal health for you.

The more you understand about the medical aspects of AIDS, the more likely you will become a participant in your health care. Participating in your health care will give you a sense of control over your AIDS diagnosis, and this sense of control will empower you to do what you need to do to live a healthy and complete life.

 

---

A dosing schedule can be used to remind you of the "what", "when", and "how" of taking your medications. You can post it as a reminder or use it to fill a weekly or daily pillbox. Follow the easy steps below to create your own dosing schedule.

Step one: Gather up all your medicine bottles and sit down at your kitchen or dining room table.

Step two: Carefully read the prescription label on each medicine bottle. Take the following information:

1. The name of the drug (ex. Epivir, Crixivan). Note: different pharmacies may list generic names for the medication (ex. lamivudine, indinavir). It is important for you to know both the brand and generic names of your medications. Table 1: "Antiretroviral Drugs" lists both generic and brand names for the current antiretroviral drugs. Use this information to fill in the Brand name and Generic name sections in the attached Dosing Schedule Work Sheet (see example 1 below).
1. The instructions on how to take the medicine. For example the label might read "Six capsules twice a day with food", "One tablet twice a day", "Two tablets every 12 hours on an empty stomach", "One capsule as needed for nausea every six hours." Use this information to fill out the Dose and Dietary sections in the work sheet (see Example 1 below).

Step Three: Use your completed Dosing Schedule Worksheet to create a Daily Dosing Schedule. By doing steps 1 and 2 you already have all the information you need to complete the form. Let’s use the information above to do this step together. There are 24 pills that must be taken each day and two that must be taken each week. The patient on these drugs gets up every morning at 6:45 a.m. and generally likes to be asleep by 11:00 p.m. This gives him 16 hours to take his medications. So, he writes in his wake up and sleep time on the Daily Dosing Schedule (see Example 2 below).

Now that we know how many hours he has, it’s a good idea to start developing the schedule with the medications that have special considerations. For this example Crixivan, Zithromax and Rescriptor are the drugs with special considerations. Given that Crixivan can be taken 1 hour before a meal this patient can take his first Crixivan dose as soon as he gets up or at 7:00 a.m. and have breakfast at 8:00 a.m. His next two doses of Crixivan will be at 3:00 p.m. (8 hours from 7:00 a.m.) and at 11:00 p.m. (8 hours from 3:00 p.m.). These times and the medication are written on the Daily Dosing Schedule.

Next we notice that Rescriptor must also be taken three times a day. So, taking it along with Crixivan is convenient and easy to remember. But, before we write it in the Daily Dosing Schedule we must first check the "Special Considerations" section of the Worksheet to see if this pairing works. Rescriptor’s special considerations are that it should be taken one hour apart from Videx (ddI) and from antacids (tums, tagament, pepcid, etc.) and there are no dietary considerations. This patient is not on Videx (ddI). However, he does occasionally take antacids and will need to keep this in mind. Given that it is okay to take Rescriptor with Crixivan the dosing of these medications is paired (see Example 2). In this example, this patient needs to take Zithromax two times a week with food, so Tuesday and Thursday at lunch time works nicely. To remind him of this, he notes on his dosing schedule "take Zithromax on Tuesdays and Thursdays only." The other pills (acyclovir, Epivir, and Zerit) have no "special considerations" and can then be worked into the remainder of his day, taking into consideration his daily routine, and normal lunch, dinner and snack times. Below is the sample Daily Dosing Schedule Worksheet the patient completed.

The information from the Daily Dosing Schedule can be used to complete a Weekly Dosing Schedule. An example is done below.

Your completed dosing schedule will include your medications and be built around your wake up time and sleep time, as well as the times you normally eat breakfast, lunch and dinner. For assistance with creating a dosing schedule call the Owen Clinic health educator at 543-2680.

---