“I don’t have a problem saying I have AIDs,” says Hydeia Broadbent in a video made as a part of a campaign with Centers for Disease Control and Prevention (CDC), but she acknowledges that many others still live in fear of sharing their status due to ongoing stigma. Human Immunodeficiency Virus (HIV), which can lead to Acquired Immunodeficiency Syndrome (AIDS), is no longer the death sentence it was in the 1980s, provided that you receive timely, consistent treatment. Still, it’s a serious illness with complications that can be fatal. Here’s what you need to know about HIV, and the benefits and side effects of medications used to treat and prevent the disease.
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HIV Symptoms
HIV symptoms can be difficult to identify, because they can look like the symptoms of many other illnesses. Here’s what you need to know.
First Signs of HIV
The first signs of HIV, in both women and men, may seem to be flu-like symptoms, but according to the World Health Organization (WHO) many people do not experience any symptoms at all. Both factors can be troublesome since people with HIV tend to be most contagious during these early stages.
If you do experience symptoms in the first few weeks after you’re infected with HIV, these are common:
- HIV rash (a raised, purple-ish rash on those with darker skin, or a redder rash on those with lighter skin.)
- Flu-like symptoms
- Swollen lymph nodes
- Weight loss
- Diarrhea
- Cough
HIV weakens your immune system, so over time, you may be more likely to experience infections that can cause a variety of symptoms caused by pathogens other than HIV itself. Those symptoms will depend on which virus, bacteria or fungi, is causing the infection.
HIV Symptoms in Women
About 5% of women with HIV experience amenorrhea, three or more missed periods in a row, according to a review of studies published in 2018. The researchers suspect that it’s caused by low body weight and immune dysregulation which then impacts your hormones.
HIV Symptoms in Men
A study that analyzed testosterone levels in 231 men age 18-50 with HIV found that 8.7% of them had low testosterone or Low T. Low testosterone was more common in those who were over the age of 43, had more than 19% body fat, or who were taking efavirenz (a common HIV drug) to manage their HIV, suggesting that low testosterone could be a side effect of the medication.
How Is HIV transmitted?
You can transmit HIV multiple ways. It’s a sexually transmitted illness (STI) but can also be spread through contact with other bodily fluids. You can get it from infected blood, contaminated needles, or from a mother to her baby during childbirth or breastfeeding. If you’ve engaged in sexual activities or shared a needle with someone who may have HIV, you should get tested for HIV.
Preventing HIV Without Medication
In addition to prophylactic medications, there are other ways to prevent transmission of HIV. If you’re having sex, it’s important to use a barrier method, such as a condom, for protection from STIs including HIV, even if your partner doesn’t have HIV. This helps prevent transmission of a variety of infections. Plus, a person can have HIV without knowing it.
If you use needles to inject yourself with substances, make sure you never share or reuse needles. Syringe exchange programs have reduced the prevalence of HIV and Hepatitis C 50% according to the CDC.
If you are HIV positive and pregnant, it’s crucial to continue taking your medication diligently to prevent your baby from getting the infection during childbirth.
Medication to Prevent HIV and Their Side Effects
There are three types of drugs that can help prevent HIV. They are called pre-exposure prophylaxis or PrEP drugs. They include:
- Descovy (an oral pill combining the HIV drugs emtricitabine and tenofovir alafenamide fumarate)
- Truvada (an oral pill combining the HIV drugs emtricitabine and tenofovir disoproxil fumarate)
- Apretude (a monthly injection of cabotegravir)
The two oral PrEP drugs are combinations of two drugs already used in HIV treatment that prevent the virus from making copies of itself when it enters your body.
Preventing replication thwarts an infection from taking hold, even if you come in contact with some of the virus.
All three drugs do come with serious risks. One is that, if the drugs are used on a patient who has recently contracted HIV, but not yet tested positive, the person’s infection can develop resistance to HIV drugs. That’s why a negative test is required to initiate treatment and then every three months throughout use.
The most serious side effects of PrEP medications are a potentially fatal buildup of lactic acid (called lactic acidosis), kidney and liver disease, and bone weakening. Kidney disease usually heals if you stop taking the medication and generally, doctors will not prescribe the drug to patients who already have kidney failure.
Weight gain is more common with the injectable, Apretude, than it is with the oral forms of PrEP.
Common Side Effects of PrEP to Prevent HIV include:
- Nausea
- Abdominal pain
- Headaches
- Weight gain or loss
- Insomnia
- Fatigue
- Nerve problems
- Skin rash
Many of these side effects dissipate within the first few months of taking the drugs.
How Soon Can HIV Be Detected in a Blood Test?
If you contract HIV, it won’t show up in a blood test right away. Like other viruses, it replicates inside your body and tests will only come back positive once there’s a large enough concentration of virus in your blood. There are several types of tests for HIV and the earliest that any test will detect the virus is 10-23 days after your exposure, but it can take up to three months.
If you had a possible exposure to HIV, and you get tested less than 90 days later and get a negative result, you still need to get tested one more time after the 90 days have passed to be sure that you don’t have the disease. Your test result can change from negative to positive any time during those 90 days. This period of time is called the window period and you can still spread HIV to others during this time.
HIV Treatments and Side Effects
There are four classes of HIV treatments, nucleoside reverse transcriptase inhibitors (NRTIs or nukes), non-nucleoside reverse transcriptase inhibitors (NNRTs), protease inhibitors (PIs), and integrase inhibitors. More often than not, the drug your healthcare provider prescribes will be a combination of these drugs.
Nukes/ NRTIs
When the virus enters your immune cells, it makes copies of its own DNA. This DNA tricks your cells into making more copies of the virus, which go on to infect more of your cells. NRTIs stop the virus from taking the first step of copying its DNA. These drugs include:
- Abacavir
- Didanosine
- Emtricitabine
- Lamivudine
- Stavudine
- Tenofovir alafenamide (TAF)
- Tenofovir disoproxil fumarate (TDF)
- Zidovudine
Side Effects of Nukess for HIV Include:
- Blood problems like anemia, which causes fatigue or decreases in white or red blood cells
- Insomnia
- Lactic acidosis, a dangerous buildup of lactic acid
- Nerve problems
- Thinning bones, which is most common if you’re taking tenofovir.
What to Do About Nuke Side Effects
A multivitamin with iron can reduce your risk of iron-deficiency anemia, but it’s important to note that iron supplements can often cause constipation. Other blood issues may require prescription medications.
A variety of lifestyle changes and supplements, ranging from guided meditations to taking melatonin, may help you sleep.
Another condition, lactic acidosis can be life-threatening. If you experience an upset stomach and vomiting, extreme exhaustion, or unusual shortness of breath, see a doctor right away.
Neuropathy, or nerve problems, can range from mild tingling in the hands and feet to severe pain. Try massages, soaking your feet in cool water, avoiding tight footwear and standing for long periods.
Exercising and taking supplements like vitamin D and calcium can lessen the thinning of bones. While there are some drugs that may help increase bone density, such as Fosamax, experts emphasize that these often can’t be taken long term, and come with side effects such as rare, sudden leg fractures, that make other options for increasing bone strength, such as lifting weights, more attractive options for people with HIV.
NNRTIs
Like NRTIs, NNRTIs prevent the virus from copying its DNA, but they do so by blocking different proteins than NRTIs. These drugs include:
- Delavirdine
- Efavirenz
- Etravirine
- Nevirapine
- Rilpivirine
Side Effects of NNRTIs for HIV Include:
- Dry, itchy skin
- Rash
- Fever
- Vomiting and abdominal pain
On AskApatient.com, many patients reported vivid and disturbing dreams that interrupted sleep while taking Efavirenz.
“Initially intense, kaleidiscopic, psychedelic dreams; that phase lasted a couple weeks,” wrote one user.
What to Do About NNRTI Side Effects
For dry, itchy skin without a rash, try moisturizer or a topical antihistamine cream.
If you develop a rash, or symptoms like fever and vomiting, call your doctor right away.
For diarrhea, you can try over-the-counter medications (though of course, even OTC medications can come with side effects of their own) and make sure to stay hydrated, or ask your provider to prescribe additional drugs. If symptoms persist, you may need a different HIV medicine.
Protease Inhibitors (PIs):
Protease Inhibitors prevent the virus from breaking down into proteins that can be replicated, another way to prevent it from infecting more cells. These drugs include:
- Atazanavir
- Darunavir
- Fosamprenavir
- Indinavir
- Lopinavir/ritonavir
- Nelfinavir
- Saquinavir
- Tipranavir
Side Effects of PIs Include:
- Increases or decreases in metabolism and fat storage
- Added risk of heart attacks, heart disease, or stroke
- Extra risk of diabetes
What to Do About Side Effects of Protease Inhibitors
Your doctor will need to test your blood regularly for signs of elevated sugar or cholesterol. To reduce your risk of cardiovascular or metabolic issues if you start to put on extra fatty tissue, try upping your exercise activity and maintaining a low-fat diet. Your provider can also prescribe medications to help reduce your cholesterol or control diabetes. If the effects are dramatic, your doctor may change your medications.
Integrase Inhibitors:
Integrase breaks the strands of your DNA, so the virus can insert its own genetic material, and begin to replicate its viral genes. Integrase inhibitors stop integrase from breaking the strands of your DNA, so the virus can’t insert its own genetic material and replicate.
Integrase inhibitors are thought to have fewer side effects than other HIV drugs because they work on the virus itself rather than our own cells. Patients do sometimes experience the side effects common to all HIV drugs, like diarrhea and fatigue.
“There are lots of reports of integrase inhibitors leading to weight gain, especially in combination [with other drugs],” Monica Gandhi, MD, MPH, who works with HIV patients at the University of San Francisco General Hospital, told “MedShadow” in 2020. “The biggest fears that we have with this are that it’s not just cosmetic, but can lead to metabolic side effects,” like heart disease and diabetes. Weight gain seems to be more pronounced in women, especially Black women, more so than in men. This is an example, she explains, of why it’s so important to conduct clinical trials in women.
These drugs include:
- Bictegravir
- Cabotegravir
- Dolutegravir
- Elvitegravir
- Raltegravir
What to Do About Integrase Inhibitor Side Effects
Your doctor will start by recommending diet and exercise, but, if the weight gain is substantial enough to put you at risk for heart disease or diabetes, your physician may prescribe an alternative drug.
Rubokia (fostemsavir)
The FDA approved fostemsavir in 2020. It’s a new type of drug that’s used alongside other HIV drugs specifically in people who have tried several other medications unsuccessfully because their HIV is resistant to those drugs.
Side Effects of Fostemsavir Include:
- Nausea
- Risk of liver damage
- Immune reconstitution inflammatory syndrome: a strong inflammatory reaction initiated when you start taking the drugs. You may experience inflammation in areas of previous injuries or infections, or systemic inflammation that causes symptoms like fevers. If this happens, your healthcare provider will need to treat the underlying infection.
Combination HIV Drugs
More recently, researchers have developed drugs that combine two to three HIV drugs in one pill, in fixed dosages. They’re listed below, based on the classes of drugs included in the combination.
Drugs that only include NRTIs:
- Trizivir: abacavir, lamivudine and zidovudine
- Epzicom: abacavir and lamivudine
- Descovy: emtricitabine and tenofovir alafenamide fumarate
- Truvada: emtricitabine and tenofovir disoproxil fumarate
- Cimduo: lamivudine and tenofovir disoproxil fumarate
- Combivir: lamivudine and zidovudine
On AskAPatient.com, many patients reported nausea, diarrhea, and muscle pain with Combivir.
One patient wrote, “I took this for one day and called the doctor to have it changed. I threw up violently, almost passed out.”
Drugs that include both NRTIs and NNRTIs:
- Delstrigo: doravirine, lamivudine and tenofovir disoproxil fumarate
- Symfi and Symfi Lo: efavirenz, lamivudine and tenofovir disoproxil fumarate
- Atripla: efavirenz, emtricitabine and tenofovir disoproxil fumarate
- Odefsey: emtricitabine, rilpivirine and tenofovir alafenamide fumarate
- Complera: emtricitabine, rilpivirine and tenofovir disoproxil fumarate
Drugs that only include a PI and a CYP3A inhibitor (CYP3A is an enzyme that breaks down PIs. Taking a CYP3A inhibitor helps PIs work more effectively.):
- Evotaz: atazanavir and cobicistat
- Prezcobix: darunavir and cobicistat
- Kaletra: lopinavir and ritonavir
Drugs that include NRTIs, an integrase inhibitor, and the CYP3A inhibitor:
- Stribild: elvitegravir, cobicistat, emtricitabine and tenofovir disoproxil fumarate
- Genvoya: elvitegravir, cobicistat, emtricitabine and tenofovir alafenamide fumarate
Drugs that include one or more NRTIs and an integrase inhibitor:
- Triumeq: abacavir, dolutegravir and lamivudine
- Biktarvy: bictegravir, emtricitabine and tenofovir alafenamide fumarate
- Dovato: dolutegravir and lamivudine
This drug includes an NNRTI and an integrase inhibitor:
- Juluca: dolutegravir and rilpivirine
- Cabenuva: cabotegravir and rilpivirine
This drug includes NRTIs, a PI, and the CYP3A inhibitor:
- Symtuza: darunavir, cobicistat, emtricitabine and tenofovir alafenamide fumarate
HIV Treatments and Birth Control
There is still a lot to be learned about the interaction of HIV treatment and hormonal contraception. If you’re sexually active and do not want to get pregnant while taking antiretroviral drugs, you still need some form of contraception, and in many cases, healthcare providers will still recommend that you take hormonal contraceptives in addition, but you should be aware of some known interactions between specific drugs.
Make sure that you go over your contraception options with a doctor who is familiar with the interactions of hormonal birth control and HIV meds — It’s confusing!
If your contraception (either oral or a vaginal ring) includes a combination progestin and estradiol, Efavirenz can lower its effectiveness by lowering the amount of progestin in your body. You may also experience more breakthrough bleeding, especially if you take low dose birth control.
Contraceptives that contain a type of progestin called drospirenone, when taken with HIV treatments that include cobicistat or ritonavir, can raise the risk of dangerously high potassium levels in your blood.
Oral contraceptives are known to increase your risk of blood clots. Taking them with certain HIV drugs increases that risk.
If you take progestin-only birth control, HIV treatments that include Cobicistat or Ritonavir can increase the concentration of progestin in your blood, raising your risk of side effects from the contraceptive. On the flip side, taking Efavirenz can lower the amount of progestin in your body, making the contraceptive less effective.
How Long Does HIV Treatment Last?
While your HIV treatment regimen may change throughout your life, depending on how well it works, your goals (such as getting pregnant), and how much virus scientists can detect in your body, you will need to continue HIV treatment for life.
Undetectable HIV
If your HIV drugs are working well, they’ll reduce the amount of virus in your blood. Over time, you may have so little virus that tests can’t even detect it. This prevents you from transmitting the virus to other people. It also stops the virus from severely damaging your immune system. It’s important to note that, even if your HIV is undetectable, you should still keep taking your medicine. If you stop taking it, the levels of virus in your body will quickly rise.
Can HIV Be Cured?
For most people, HIV is a lifelong illness that will require lifelong treatment. Scientists have found that in very rare cases, people with HIV who also had certain cancers, the stem cell transplants used to treat their cancer also seemed to clear the HIV from their bodies. However, these transplants are high risk, and doctors do not recommend them unless you need them for cancer treatment. Still, the fact that five people have been cured gives researchers hope.
Does Medical Marijuana Help HIV Symptoms?
Using medical marijuana will not help lower your viral load or treat the illness, but in some cases, it may help you control certain symptoms. Research is limited, but some people report that it helps with pain.
Medical mairjuana may also help with nausea, increasing appetite, and weight gain in those with HIV, according to a review of several small studies that used cannabinoid drugs or drugs derived from medical marijuana. None of the studies were long term.
How to Prevent HIV Transmission from Mother to Baby
You can transmit HIV to your baby while giving birth, so it’s important to plan ahead if you’re hoping to get pregnant. If you start treatment before you become pregnant, and your viral load stays low throughout your pregnancy, there is only a 1% chance that you’ll pass the virus on to your baby.
Some antiretroviral regimens work better during pregnancy than others, but changing your treatment regimen during pregnancy can increase your viral load, raising the risk of transmitting the virus to your baby. For example, scientists have found that some treatments are associated with a higher risk of preterm birth. That’s one reason it’s so important to plan ahead.
You should also be aware that, because of ethical complications, there are still a lot of unknowns about the effects these drugs may have on you and your baby during pregnancy. There is a voluntary patient registry to report side effects and birth defects for women taking medication to treat HIV and their babies. This provides much of the information that you and your doctor will discuss when choosing your treatment plan before, during, and after pregnancy.
You’ll also need to discuss options if you intend to breastfeed your baby. You can transmit the disease through breast milk, so you’ll need to be sure that your viral load is low, and might consider giving the baby preventive medication, as well, during this time.
It’s crucial to discuss the risks and benefits of your current treatment plan and any other treatment options with your healthcare provider as soon as possible if you become pregnant or plan to do so.
