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Don't Wait to Get Sick -- Stay in Good Health with Medications

Fall 1999

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Once you know you're HIV positive, it is a good idea to get a T-cell count and a viral load test. It is important to know your counts because if your T-cells are low and your viral load is high (over 5,000), there are treatments which are immediately available that can help you to prolong your life.


T-cells

T-cells are one variety of white blood cells and are a main component of the immune system which enables the body to fight off infections of various agents such as bacteria, parasites, viruses and fungus. Generally people with 600 to 1,000 T-cells have a normal functioning immune system, which protects the body from invasion of disease, and fights off infections when they invade the body. HIV attacks and destroys T-cells. (also called T helper cells, CD4 cells, CD4 Lymphocytes, CD4+, and/or T4's).

Current recommendations for women with T-cell counts above 600 and viral load counts below 5,000 copies are to get closely monitored and repeat a CD4 test every three to six months. Medications are optional at this point, and should be discussed with your doctor.

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When a woman is having symptoms, a course of treatment for the cause of those symptoms is recommended at any T-cell level. One reason to continually monitor your T-cells is that it gives you a good idea of just how compromised your immune system really is. Along with viral loads, a T-cell measurement can help you to decide when to consider the idea of taking antiretroviral medications to slow/stop the virus from causing more damage to your immune system. These same medicines can help to delay or prevent the onset of opportunistic infections.


Monitoring vs. Healthcare

T-cell and viral load monitoring is not healthcare. Often, too much emphasis can be focused on absolute numbers. It is more important to pay close attention to trends in your T-cell count and viral load tests. Trends in T-cell decline or an escalating viral load will give you a good indication that it is time to start treatment for HIV.

As T-cell counts decline there are serious risks for opportunistic infection (abbreviated "OI"). An OI is an infection that invades someone who has decreased immunity. (The infection takes the "opportunity" and invades the body). Most people have been exposed to a multitude of disease germs. These germs are everywhere: in the water, the soil, the air or they are already in the body. As the immune system becomes more compromised, the infection takes the opportunity to attack the weakened body. OIs are deadly.


OI's are Preventable

There is no reason to wait until you develop an OI; most of them are preventable. If an HIV infected woman with T-cell counts around 500 and above 50 adheres to a regimen of potent combination antiretroviral therapy her life can be extended and many OIs can be avoided. Prevention of OIs is also called prophylaxis. Prophylaxis means you take medication to prevent the development or recurrence of an OI. Taking prophylaxis or preventative medications can extend your life.

For those who simply cannot tolerate HIV medications, or do not have reasonable access, and for those who choose not to take them, it becomes even more important to prophylax against the onset of an opportunistic infection.

A woman with CD4's under 200 who cannot tolerate, or chooses not to take antivirals must take preventative medications in order to increase her life expectancy.


Before HAART

Historically, opportunistic infections have been the hallmark of severe HIV infection, characterizing AIDS and usually being the major contributor to sickness and death in HIV-infected people. The advent of potent antiretroviral therapy has had an amazing effect on opportunistic infections in developed countries. The incidence of new infections has fallen dramatically, and with it, deaths from AIDS are also down. There is now a greater emphasis being put on the implications of potent antiretroviral therapy for the treatment and prevention of opportunistic infections.

Several recent studies have shown that the incidence of major OIs (PCP, MAC and CMV) declined from 21.9 per 100 persons in 1994 to 3.7 per 100 persons by mid 1997 in eight US cities. Increases in the intensity of antiretroviral therapy were associated with reductions in disease and death with the greatest benefit in the combination antiretroviral therapy group. It is clear that effective control of HIV replication is a major reason for decreased incidence of opportunistic infections.

The reason people are staying healthier & living longer is because they are taking medicine to treat HIV infection. All of us here at Women Alive understand that it is not your fault if you cannot take the HIV medications and we support your decisions to opt not to take them when quality of life is an issue and the decision is an informed one. However, unfortunately these advancements do not apply to those who cannot take medications for HIV infection (antiretroviral therapy) nor to those who do not take medicine to prevent the onset of an opportunistic infection.

Opportunistic infections still occur in several situations. (in fact, OI's are on the rise among PWA's in rural America. A 67% increase in the incidence of OI's is currently being experienced in rural areas.) OI's remain an important signal to physicians that someone unknowingly has AIDS. Most often this happens with previously undiagnosed (or untreated) HIV infection. OIs also occur in patients for whom antiretroviral therapy has failed, and they can occur in patients shortly after the initiation of potent antiretroviral therapy.

Opportunistic infections can still occur in patients on potent therapy even if they have effective control of HIV replication. Typically this occurs in the first few months (usually within 3, but in some cases up to six months) after the initiation of potent therapy and typically occurs in patients who had CD4+ cell counts under 50 prior to the initiation of potent antiretroviral therapy. A reasonable starting point is around 500 T-cells and/or a viral load of over 5,000.


Improved Outcome

The outcome of OIs has also changed with HAART (Highly Active Anti-Retroviral Therapy). There are many recent reports of improved outcome of OIs related to the use of HAART, particularly for previously untreatable infections. For example progressive multifocal leukoencephalopathy (PML) does not have any specific curative treatment. {PML is a central nervous system disorder seen in about 4% of PWA's. It is caused by reactivation of the "JC virus, a papovavirus. 80 to 90% of adults have been infected with the JC virus, but it stays dormant in the kidneys. Immunosuppression, including that caused by HIV, can lead to reactivation of the JC virus. The JC virus infects the brain cells which produce a substance called myelin which provides a protective covering for the nerves. When the JC virus destroys the myelin, the nerve cell dies. As the nerve cells continue to die, lesions are formed in the white matter of the brain.} However, the natural history of PML has been altered, in patients treated with HAART experiencing significantly improved survival. In one study, the median survival time improved from 3 months to 15.5 months in patients treated with HAART.

Unfortunately, not all cases of PML respond to HAART. Cases of micro-sporidiosis and cryptosporidiosis have also improved with the use of HAART. Cases of CMV are also on the decline with HIV positive people who adhere to HAART. Studies have concluded that: Effective antiretroviral therapy alone can decrease and eliminate CMV infection in most patients. People with CMVPCR+ in plasma (if you test positive for cytomegalovirus) remain at risk for CMV disease in the first year of HAART -- the major risk is in the first 3-6 months. It may be worth considering prophylaxis for a short time in patients with CD4+ counts at or below 50 who are CMV PCR positive when starting HAART.


Prophylaxis

The reconstitution of immunity with HAART suggests that continued prophylaxis of OIs may no longer be necessary in patients whose CD4+ cell count rises. The main question is whether —and when—immune restoration from HAART alone is sufficient to prevent OIs in patients previously at risk.

For example, can a patient who needed PCP prophylaxis discontinue trimethoprim-sulfamethoxazole (TMP-SMX -- Bactrim) when the T- cell count rises above 200? * The answer is PROBABLY! What T-cell (CD4+) count is high enough to permit the safe discontinuation of prophylaxis? The answer is that scientists do not know conclusively and more research needs to be done. (Heard it before?)

Official recommendations are expected to come out soon. In the mean time, make sure you discuss prophylaxis for OIs with your doctor.


Common OI's

Some OIs common in women include PCP, herpes simplex virus, invasive cervical cancer, bacterial pneumonia, sepsis, MAC, lymphoma, and others. We will address the first three listed.


PCP

PCP (Pneumocystis Carinii Pneumonia) is one of the most common OIs or AIDS defining events in women with HIV. It could be because most women are not screened for HIV early on when the onset of OIs can be prevented.

Symptoms of PCP include fever, non-productive or dry cough, progressive shortness of breath or a feeling of tightening or pressure on the chest.

If your doctor suspects you have PCP, she/he may order a chest x-ray and/or an induced sputum test. The sputum test involves breathing harsh vapors which will make you cough; the sputum you cough up is then examined. A definitive diagnosis of PCP is done by a bronchial biopsy, (bronchoscopy -- taking a picture inside the lungs.) It is an invasive procedure. You can treat PCP with high doses of Bactrim or intravenous pentamidine.

PCP can be prevented by taking one Bactrim a day which also prevents toxoplasmosis (which is a brain infection). If you take Bactrim every day the chances of developing PCP is 1% to 5%. That means you have a 95% chance that you will not develop PCP. PCP is life threatening and often fatal. It's extremely important to try to prevent PCP because PCP is deadly. It is crucial to seriously consider prophylaxing against OIs at 300 to 200 T-cells or below. The catch with Bactrim and Dapsone, (another prophylaxis that is used when Bactrim is not well tolerated), is that they are sulfa drugs and may cause yeast infections. You can take acidophilus and yogurt to offset these effects.

It should be noted that a significant percentage of women with HIV/AIDS are allergic to Bactrim. However, people who are allergic, can be desensitized. If you experience rash, redness, fever, or feeling sick, discontinue the medication and consult your physician, ASAP. Aerosolized pentamidine, is still available and can be used as PCP prophylaxis for people who cannot tolerate HAART, Bactrim or Dapsone. This involves breathing vaporized pentamidine through a nebulizer. Proper breathing technique is important. It is usually recommended that treatments be taken at least monthly.

In a recent study, researchers have identified another effective, preventative medicine for PCP prophlaxis: Atovaquone suspension as aerosolized pentamidine in preventing PCP. Although not as effective, atovaquone suspension is safe for people who cannot tolerate sulfa drugs (Bactrim, etc.). And of course there is Mepron.


Herpes Simplex Virus

Herpes is considered to be an opportunistic infection. Herpes simplex virus can invade the lungs, esophagus, bowels, genitals, and mouth.

Herpes presents as a painful ulcer or lesion on the skin. Usually the ulcer comes back in the same place each time. In women with HIV, herpes can also be recurrent. Whereas HIV negative women who have herpes simplex virus may get an occasional outbreak (once or twice a year or with pregnancy), in women with HIV infection it can occur more often and spontaneously. Symptoms are usually more severe and harder to treat. If it is not treated the infection can disseminate to other parts of the body (like the eyes for example -- which if untreated can make you go blind) and that's what you want to avoid.

Stress or illness can cause an outbreak of herpes. Sometimes you may notice signs that an outbreak is about to occur, usually a tingling or numbness where the lesions have previously appeared. If you notice these signs, you can alert your healthcare provider in advance and perhaps receive medications to either avoid an outbreak or limit the severity of the outbreak.

If a woman is experiencing an outbreak more than 3 or 4 times a year, she can take a suppressive dose of medication. One to 3 pills of 200mg. Zovirax can help prevent a recurrent outbreak of primary lesions. In women, lesions most commonly appear in the genital area. The lesions can become very large and disseminate to other areas of the skin. If herpes disseminates or spreads, the treatment will be intravenous and may require hospitalization.

In addition the herpes lesions act as a reservoir to harbor HIV. Therefore, if your sexual partner (regardless of gender) is HIV infected and has an active outbreak of herpes, you may be at increased risk for initial or repeated exposure to HIV during sexual contact.

It is important to know that during an active outbreak, herpes is contagious. It can be transmitted sexually even if one is using a barrier method.


Cervical Cancer

Human Papilloma Virus is a viral infection that presents as genital warts internally; in the vagina, cervix, uterus, and/or the reproductive organs, and you may not know that they are there. Warts can also appear externally on the vaginal lips or around the anus.

Warts are cauliflower-like lesions and become quite painful. They often bleed, especially with sex. If you get itching or bleeding with penetration you need to suspect cervical warts. Type 16 and 18 are the most common ones that can result in cervical cancer. There are several other subtypes of HPV that are related to cervical cancer. HPV can be typed by examining the DNA. Many labs are not equipped to type HPV. Still it's important to know if the type of HPV you may have is linked to cervical cancer. 90% of all cervical cancer is HPV related. With HIV infection a more rapid progression to invasive cancer is likely. The frequency and severity of cervical cancer is greatly increased in (+) women.


Early Detection

Cervical cancer is a reversible disease IF it is detected early enough. However, it can also kill you, if left undetected and untreated. That's why typing of HPV when it is first detected is important. If typing is not possible, you can insist on a colposcopy which is used to detect and diagnose cervical cancer. Women are encouraged to get a colposcopy at least once a year (where a biopsy of the cervix tissue is examined). This is a good idea for HIV positive women, even if HPV has not been detected; it is crucial when HPV has been detected.

Women who have less than 200 T-cells are at an increased risk for cervical cancer. Pap smears should be done every three to six months in women with HIV. Yet often, HIV can cause pap tests to be an ineffective way to detect cervical dysplasia (this is why colpo-scopic exam is encouraged).


Conclusion

As the immune system becomes weaker, symptoms of HIV disease can occur spontaneously. So, take care of yourselves. Talk to your doctors and treatment advocates about preventing opportunistic infections. Or you can always call a Treatment Information Hot Line: WA, 1.800.554.4876

Sources include consultation with Rosa Vasquez, RN and written materials from: STEP & {William G. Powderly, MD -- Medscape HIV/AIDS 5 (Supplement): 1999 Annual Update.}


A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
 
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