Many people still believe that if HIV doesn't kill you, then HIV-related complications will. But that is not true. Managing complications from HIV is a far cry from what it was in the past. If you and your doctor are vigilant, staying healthy and living a full life with HIV are very possible.
"In the current era, patients should not feel as though HIV is in any way a death sentence,” says Monica Gandhi, MD, MPH, director of the HIV Consult Service at San Francisco General Hospital.
In fact, many HIV complications can be avoided, says Babafemi O. Taiwo, MBBS, an internist and assistant professor of infectious diseases at Northwestern University’s Feinberg School of Medicine in Chicago. "This is not 1985, when you had to take AZT and you had to live with anemia," he says. "The notion that you have to suffer through an HIV regimen is really archaic. You can find a regimen that best suits your lifestyle with no adverse effects."
The disease still offers its challenges, say these two HIV experts. But HIV medications are much less toxic and easier to tolerate than in the past. Staying healthy with HIV is now within reach if you protect your overall health and work closely with your doctor to avoid complications.
Complications of HIV Infection
If you experience complications, it can be difficult to know whether they are from the drugs or related to having HIV itself. "Some conditions of 'chronic inflammation' are presumably linked to the HIV infection," says Gandhi, who is also associate professor of medicine in the divisions of HIV/AIDS and infectious diseases at the University of California in San Francisco. These include a greater likelihood of:
- Heart disease
- Liver disease
- Kidney disease
- Nerve damage
- Eye disease
The immune system may never fully recover from damage after HIV infection. This becomes more apparent as people with HIV reach their 50s, Taifo says. Problems that often come with aging -- such as bone thinning, frailty, or memory loss -- are showing up earlier in these people than in those who are uninfected.
Still, some of these problems can be slowed down, or even averted, by taking care of your health. "Even if some damage has been done by chronic HIV infection, a lot can be reversed by managing lipids aggressively and by not smoking or by starting exercise," Gandhi says. The same would be true for someone who is not HIV-infected.
Severe weakening of the immune system can also lead to opportunistic infections such as:
- Pneumocystis cariniipneumonia (PCP)
- Candidiasis (thrush)
- Cytomegalovirus (CMV)
- Tuberculosis (TB)
- Mycobacterium avium complex
Complications of HIV Medications
Some of the more common HIV medication complications are related to metabolism, the chemical processes needed for life. What form they take depends upon the type and class of medication. They include:
- Body fat abnormalities, such as facial fat loss or extra belly fat
- Insulin resistance, leading to blood sugar problems
- Problems with metabolism of fats (lipids)
- A buildup of lactic acid in the blood
- Bone disease, such as osteoporosis
Some of the best news is that many of the older nucleoside reverse transcriptase inhibitors (NRTIs) that cause severe complications are now either used less or not at all. This includes AZT (zidovudine), which causes anemia and fat wasting, as well more subtle side effects like headache or nausea. Stavudine and didanosine are no longer prescribed in the U.S because of notable fat wasting, lipid problems, and severe burning and aching in feet and legs (neuropathy), Taiwo says.
It is now possible to switch patients to better tolerated alternatives, including tenofovir, Taiwo tells WebMD. But there are some "lingering concerns" about its long-term effects on bones and kidneys, so it is a subject of ongoing study.
There are conflicting reports about the potential risks of abacavir, particularly related to cardiovascular problems. Severe allergic reactions are also possible. But for the most part, it’s possible to identify risk through genetic testing, Taiwo says.
HIV Complications With NNRTIs
Efavirenz is a non-nucleoside reverse transcriptase inhibitor (NNRTI) that is included in most initial regimens. Central nervous system side effects, including nightmares or trouble sleeping, are a common problem with this drug, Taiwo says. But this complication tends to go away by itself. Patients with seizures or depression may suffer more severe symptoms, however. "More recently, there are reports that efavirenz can affect metabolism of vitamin D," Taiwo says.
The big issue with another NNRTI, nevirapine, is its potential impact on the liver -- particularly in patients with high counts of CD4, immune system cells that HIV attacks. Some patients may also experience severe and potentially life-threatening allergic reactions. However, unlike some other medications, nevirapine has few effects on lipids, which can be an issue if cardiovascular problems are a concern. In fact, nevirapine increases levels of good cholesterol (HDL) in some patients.
HIV Complications With Protease and Integrase Inhibitors
Low-dose ritonavir, a protease inhibitor, is now the norm in all protease-based regimens. The higher the amount of ritonavir, though, the greater the chance of gastric side effects and metabolic complications such as central obesity, insulin resistance, and lipid problems, Taiwo says. Paired with the PIs atazanavir or darunavir, the low-dose ritonavir boosts the drug levels of the primary PIs.
Raltegravir is currently the only FDA-approved integrase inhibitor, but several others are in development. "These novel drugs seem to be very well tolerated," Taifo says.
HIV Complications With Fusion Inhibitors
If you become resistant to other medications, your doctor may prescribe a fusion inhibitor called enfuvirtide. With this medication, it is common to have a reaction at the injection site. This may cause pain and other symptoms. However, complications are not common. A rare hypersensitivity reaction causes symptoms that may include a rash, fever, and nausea, for example. And with this medication, you also have an increased risk of bacterial pneumonia.
Avoiding HIV Complications: When Should You Start HIV Treatment?
Decreasing the risk of HIV complications and staying healthy with HIV depends partly on starting treatment in a timely way. But what is considered “timely” has changed over time. Treatment was once started when a person’s CD4 count was under 200. Then it changed to under 350.
Now the recommendation is to start treatment if the CD4 count is less than 500. That may be due in part because the lower the CD4 count goes, the more difficult it is to rebuild the immune system. In fact, many large studies have shown that delaying treatment greatly increases the risk of death over the long term, Taifo says.
For some people, treatment is recommended no matter the CD4 count. This includes pregnant women and people who:
- Have signs of kidney disease, hepatitis B or C co-infection, or many risk factors for heart disease
- Have a viral load more than 100,000 or a CD4 count that's dropping very fast
- Have any signs of AIDS
- Are in relationships with partners who are HIV-negative
- Are 60 or older
Healthy Living With HIV: Talk to Your Doctor
When you first start on an HIV medication regimen, communication with your doctor is critical -- especially within the first six weeks. "Our job is to educate patients before taking medications and to look out for problems that can be permanent and prevent those that can escalate,” Taiwo says.
Ask your doctor what to expect in terms of side effects and know which ones are likely to subside during the first few weeks. Make sure you have all your providers’ numbers, including after-hours, and know exactly what to do if you run into a problem.
"Some side effects will go away, so try to have a little bit of patience after talking with your provider," Gandhi says. Reassure yourself that these are not dangerous side effects that require a switch or discontinuation of therapy. And when they’re over, you’ll probably only need to check in with your doctor about every three months.
"As long as there is good communication, we can usually help people get through that initial discomfort," Gandhi says. "The most important thing is that there is a line of communication so the patient is not at risk of stopping therapy without checking in about how to make things more comfortable."
Even a potentially life-threatening problem such as immune reconstitution inflammatory syndrome (IRIS) doesn't necessarily require a switch in regimens. That's because it tends to go away by itself. IRIS occurs at the beginning of treatment when the immune system suddenly becomes more active. This can make symptoms of pre-existing conditions temporarily much worse. If it is too severe, steroids may be needed. Again, close communication with your doctor can help sort out which side effects are signs of more serious complications.
How to Decrease the Risk of Complications with HIV
Many factors contribute to how successfully you can manage HIV complications. This includes other medications you’re taking or conditions you have, such as tuberculosis. It also depends on your tolerance to side effects and schedules for certain medications, and which alternative regimens are available for you.
Try these strategies to help lower your risk of HIV complications and stay healthier with HIV:
- Take medications as directed. Drugs can stop working if you don't take them exactly at the right time in the right way each day. For example, if you are using a drug twice a day, try to take it 12 hours apart. If this is difficult for you to maintain, talk with your doctor about a once-a-day regimen.
- Prevent drug interactions. Tell your doctor about all other medications you're taking, including over-the-counter and recreational drugs, and supplements. Antacids, for example, can interact poorly with atazanavir.
- Be screened for the most common complications. Your doctor can screen for some of the more common complications of HIV, including risk factors for heart disease and stroke, as well as bone and kidney disease. "Malignancies are more difficult to plan for or head off at the pass," Gandhi says. "But there are multiple malignancies that should be screened for in HIV-infected patients."
- Move toward a healthier lifestyle. You're managing your HIV well, but still smoking, not exercising, and eating a poor diet. What’s wrong with this picture? Taiwo challenges his smoking patients by saying, "Maybe you should just continue smoking and not take any medications because at this rate you're more likely to die from cancer or heart attack than from HIV." If you need help stopping a health-compromising habit, get it.
Lifestyle changes can improve even some cholesterol problems related to HIV medications and, of course, bolster health. For example, many people with HIV are low in vitamin D, which has been linked with a number of conditions.
"A lot is in your hands," Gandhi says. Be very vigilant about your overall health and remember that your doctor is your partner in this effort. She suggests saying this to your health care provider: "I'm not just here to manage my HIV infection, but to hopefully live for a very long time. So why don't you tell me all the ways I can do that?"