Living With HIV -- and Everything Else

Living With HIV -- and Everything Else!

Recently, a 55-year-old gay man announced to his dinner companions, "Well, I hear that having HIV is now just about taking one pill a day. I can do that, so I'm going to stop using condoms."

As anyone living with HIV knows, managing this disease is about far more than taking a pill. First, the once-daily pills will only work if you are infected with a strain of HIV that's not resistant to any of the medications in the pill (it's estimated that up to 27% of new infections contain drug-resistant virus). But even if the virus is easily controlled, new research shows that HIV can cause damage even at higher CD4 counts, due to the inflammation caused by HIV's constant activation of the immune system. That's one of the reasons the recommendation to start HIV treatment has been bumped up to include anyone with a CD4 count below 500. Some experts and public health authorities (such as the New York City and San Francisco Departments of Health) are recommending that treatment be offered to anyone with HIV, regardless of CD4 count (although preventing new infections is also a factor in this approach).

And living with HIV often means living with other chronic conditions known as comorbidities. Whether these are caused by another virus (such as hepatitis C) or are one of the illnesses so often seen in older adults with HIV (such as osteoporosis), these conditions complicate the care of people with HIV and make their lives anything but simple. This is not to say that life with HIV is miserable, just that it takes a lot of health management and remains something to be avoided -- especially if the choice is between using condoms or living with a lifelong infection.

The good news is that people with HIV may live as long as someone who is HIV-negative if treatment is started early enough. But while advances in HIV treatment have saved many lives, the medications used can have side effects that affect different people in different ways. This article will look at some conditions that people with HIV should be aware of, whether they have been on meds for years or are new to them. We'll also examine how people can improve their quality of life without taking more meds.


This condition is defined as the abnormal loss of fat from one area of the body -- usually the face, arms, and legs -- and an increase of fat in the stomach or at the back of the neck ("buffalo hump"). In women, breast size may increase due to fat buildup. Lipodystrophy became well known in people with HIV in the mid- 1990s when combination HIV treatment was first used. Over the years, it has decreased, since the newer meds are less toxic. With the earlier onset of aging associated with HIV and one's own genetics, however, there is still a risk for lipodystrophy later in life. While there are meds that can be used to treat lipodystrophy, they are often very expensive and may not be covered by insurance.

Managing lipodystrophy can be approached in different ways. First, if one is taking meds that have been shown to cause fat loss, switching may help restore some fat or stop further loss. A few studies have already shown this approach to be effective. If one is not able to switch because of drug resistance or other reasons, non-medicine treatment options include weight-bearing exercise and nutritional supplements. Weightbearing exercises include things like bench presses, squats, lat pull-downs, etc., and has been shown to increase lean body mass. Aerobic exercises like running and cycling are not helpful in building lean body mass because they break down muscle even further. If total body weight and lean body mass are stable, however, people can alternate aerobic with weight-bearing exercise. People should talk to their health care provider and an educated trainer before starting any exercise program.

Research also shows a relationship between the fat buildup in the stomach and insulin resistance. This is a condition in which the body's natural insulin becomes less able to lower blood sugars. Fat and muscle cells need insulin to absorb sugar. When these cells don't work properly, blood sugar levels rise beyond the normal range and cause negative health effects like high cholesterol. Supplements such as milk thistle, N-Acetyl Cysteine (NAC), and Alpha Lipoic Acid have all been shown to help the body absorb sugar. Omega-3 fatty acids and carnitine can help lower high cholesterol caused by lipodystrophy. These supplements may also have other benefits, such as reducing fatigue, muscle weakness, and neuropathy (pain from nerve damage).


Wasting can also occur in people on HIV meds. Wasting is generally defined as an involuntary loss of 10% or more of total body weight. Changes in metabolism, lack of appetite, low testosterone, gastrointestinal disorders, and changes in the immune system can all cause wasting. It can be due to any one of these conditions or a combination of them. When the body is under attack from infection, lean body mass and muscle are usually the sources of energy the body uses to fight back, which can result in wasting. When meds are able to control HIV, the weight does return, but usually in the form of fat and water weight. This means that lean body mass and muscle are lost and treatment to address this may be needed.

Treatments for wasting vary. They may include nutritional supplements like L-glutamine, protein supplements, testosterone replacement, or treating an infection that is causing diarrhea. Weight-bearing exercise and proper nutrition can also help ward off wasting. Providers may differ in their approaches to diagnosing and treating wasting, so it's best to ask questions to understand the causes of wasting and what can be done to combat it better.


HIV disease can also lower testosterone, needed to build bone and muscle mass. Testosterone also increases muscle strength, increases bone density and strength, and is useful in preventing osteoporosis. Women produce testosterone, but to a much lesser degree than men. Testosterone levels gradually decline with age, usually starting in the late 20s in men.

There is disagreement about if or when to use testosterone replacement or anabolic steroids in older men. There is not even agreement on the level of testosterone below which a man would be considered for treatment. And there are no standards for when to treat women. Identifying severe loss of testosterone in an older man by symptoms alone can be difficult because testosterone levels change based on the time of day and the type of test.

Replacement therapy can be taken by injections, gels applied to the skin, pills, and patches. Negative effects of synthetic testosterone range from minor problems like pimples, oily skin, and hair loss to serious complications like increased red blood cells, which may require removing blood. These side effects are more commonly seen in people who overuse testosterone or steroids.

While there is no proof that testosterone replacement causes prostate cancer, it is recommended that physicians screen for prostate cancer with a digital rectal exam and PSA (prostate specific antigen) test before starting therapy. And if therapy is started, red blood cells and PSA levels should be monitored closely. People using steroids must have regular liver function tests and providers may recommend supplements to boost liver health.

Bone Problems

Many studies have shown a reduction of bone mineral density (BMD) in people with HIV. This can result from continuous use of HIV meds in addition to HIV itself, plus other risk factors such as older age, smoking, alcohol use, steroids, low vitamin D levels, low estrogen in women, and low testosterone in men. Low BMD may be linked to an increased risk of bone fractures. While some studies found no difference between HIV meds, other studies have shown some HIV meds can cause BMD loss. Researchers don't fully understand why. Of the meds that contributed to the loss of BMD, the greatest loss occurred during the first two years of treatment. After this period of time there may be a partial to full rebound in BMD. Treatment for individuals should be based on their risk factors.

Most people will benefit from calcium supplements. The type of calcium supplement, however, depends on the medications they are taking. Weight-bearing exercise has also been effective in preventing BMD loss. Most younger people with low BMD will not require treatment, and the need for bone-protective therapy should be guided by the risk of developing a bone fracture. Vitamin D levels should be measured in people with an increased risk of fractures, and vitamin D supplements should be taken by those with low vitamin D.

Vitamin D replacement has become an important topic in the past few years, since studies have shown a direct relationship between HIV and vitamin D deficiency. Vitamin D is essential for bone health, calcium balance, and immune function. It is found in fish, milk, and cereal, but most of the vitamin D we have comes from sunlight. Deficiency can occur due to disease (in particular HIV and kidney disease), HIV meds, poor diet, or a lack of sun exposure. Screening for vitamin D has become a routine part of HIV practice. Supplements can be prescribed, or over-the-counter products can be used. The strength and frequency of vitamin D supplementation will vary depending on the level of deficiency present.

Heart Disease

People with HIV have an increased risk of heart disease and stroke. This is especially true if they also have other conditions like high blood pressure or diabetes. And the risk increases even more in individuals who smoke, are not physically active, are overweight, or male. Some studies have shown a 20% increase of death due to cardiovascular disease in people with HIV.

Treatments vary -- ideally, lifestyle changes such as healthy diet, quitting smoking, and starting an exercise program should be a first approach. These alone can significantly help in reducing the risk of heart disease or stroke. They may even reduce the amount of meds needed to treat other medical conditions. In certain cases, a mix of lifestyle changes and meds may still be needed. Certain meds can increase cholesterol, so switching to another medication may help.

People with HIV require six to 25 times the recommended daily allowance of certain vitamins and minerals. Thus a multivitamin is often required, either over the counter or by prescription. It's important to check with a health care provider before starting any supplements.

High Blood Pressure

Living With HIV -- and Everything Else!

The normal thickening of fibers in the blood vessels that occurs with aging may lead to higher systolic blood pressure (the top number). The target is to have the top number about 130 and the bottom about 70. The level should not be too low in older adults, however, since that can lead to other complications. Although high blood pressure in people with HIV is most likely due to other factors that can be modified -- such as obesity, high salt intake, and physical inactivity -- medication is recommended for persistent high blood pressure in order to reduce the risk of heart disease. It should be possible to find a regimen that is easy to take with other medications, since these drugs are often taken once a day.


The frequency of diabetes has been reported to be about four times higher in people with HIV. It is usually Type 2, which is associated with aging and obesity, but it can be made worse by certain HIV medications, such as protease inhibitors. Screening for diabetes through blood tests should be done regularly. It is now possible to have this done reliably without fasting through a test called "glycosolated hemoglobin". If diabetes is diagnosed, many times high blood sugar can be controlled with weight reduction and dietary changes, or modification of HIV medications. But if necessary, there are a variety of treatments for diabetes that can be used successfully. The target glycosolated hemoglobin level should be set higher in older persons to avoid the possibility of complications from the blood sugar getting too low.

Kidney Damage

As we age, our kidneys usually continue to clear waste products from the body effectively. But high blood pressure, diabetes, streptococcus infection, or other factors can cause kidney damage. HIV has been associated with a specific type of kidney disorder called HIV nephropathy, which is more common in African-Americans.

People with HIV should have creatinine, glomerular filtration rate, kidney function, and urinary protein checked annually. If kidney function is compromised, it may be necessary to adjust drug dosages to avoid an overdose. Sometimes the kidneys can be so damaged that they begin to fail, requiring dialysis (regular cleansing of body wastes with a machine). A kidney transplant can be done as a last resort, and has been successfully done in persons with HIV.

Comorbidities in Older Adults

On World AIDS Day 2011, the American Academy of HIV Medicine, the American Geriatrics Society, and ACRIA released a report entitled The HIV and Aging Consensus Project: Recommended Treatment Strategies for Clinicians Managing Older Patients with HIV. It presents the findings of an expert panel of leaders in HIV care and research as well as clinical and research experts in geriatrics.

Having several illnesses at the same time usually occurs only among people in their late 70s and older. But it is now happening in people with HIV who are younger than 65 (on average, 55 years old). We can only speculate that HIV itself, HIV treatment, the aging process, or behaviors that are seen commonly in those with HIV may contribute to the problem.

If providers use disease-specific guidelines for people with multiple conditions, the treatment plan can become quite complex and involve a large number of medications with a demanding dosing pattern. Issues of adherence and drug interactions become serious concerns. Add mental health conditions, cognitive impairment, substance use, and limited health literacy, and consistently following such a complex regimen becomes a challenge.


Treating HIV will bring up different concerns for different people. This is why good communication with a health care provider is so important. With proper counseling, education, lifestyle changes, or supplements, many of these concerns are manageable and the overall quality of life can be improved.

Michael Modzelewski is a pharmacist with MOMS Pharmacy of NYC. Richard Havlik is a medical epidemiologist, formerly with the National Institute on Aging.