Living Well with HIV

Should you start HIV medications right away?
The short answer is yes. Your health care provider will help you make the decision that is best for you, but generally, it’s wise to start HIV medicine as soon as you can. Some situations can increase the urgency of starting HIV treatment, including having a very low CD4 cell count, being pregnant or having another serious health condition such as hepatitis B or hepatitis C. Getting treated for HIV as early as possible is best for your health and the best way to prevent passing HIV to other people. This has been proven with very large clinical studies that have shown that people living with HIV reduce their risk of HIV-related illness and improve the health of their immune system by starting HIV medications as soon as they are diagnosed. Many people feel relieved to start treatment, because it means they are taking care of themselves and their health.

What happens if you don’t take HIV medications?
HIV is a virus that invades cells that are part of our immune system. Our immune system is our body’s natural defense system against disease and infections. HIV takes over immune system cells (called CD4 cells or T-cells) and uses these cells to make copies of itself. Over time, and without HIV treatment, the virus makes thousands to millions of copies of itself in a person’s body. These virus cells slowly destroy the immune system, leaving a person vulnerable to other infections and conditions.

What are HIV medications, and what do they do?
HIV medications are called antiretrovirals (ARVs). They are effective at keeping HIV under control, and preventing the virus from “replicating,” or making copies of itself. The goal of antiretrovirals is to suppress the ability of the virus to replicate, lowering the presence of virus in your body to “undetectable” levels.

Being undetectable means there are so few copies of the virus in your body that it can’t be measured by standard viral load tests. Studies have demonstrated that being undetectable (<200 data-preserve-html-node="true" copies/mL) for at least six months means you won’t transmit HIV to others through sex. Being undetectable also means that the virus is less able to attack your immune system cells (CD4 or T-cells). If your immune system cells (CD4 or T-cells) are not under attack, they have a greater chance of fighting any other viruses, germs or other infections your body comes into contact with—which means you will be less likely to get sick.

Undetectable does not mean that the virus is gone from your body or that you are cured of HIV—being undetectable means that the virus is being kept at extremely low levels in your system by the medications. When you are undetectable, you will still test positive for HIV. If you stop taking your medications, the levels of virus in your body will increase.

How do you get to be “undetectable”?
Most people living with HIV can get to be undetectable by taking their HIV medications every day for a period of time (usually one to six months) as prescribed by their health care provider. Most people can stay undetectable by continuing to take their HIV medications as prescribed by their health care provider. The provider who is managing your health and HIV can tell you more about what you can personally do to get and stay undetectable.

What treatments are available for HIV?
Today, most people starting medication for HIV only need to take one pill each day (as this single pill usually contains three or more HIV medications). There are multiple HIV medication options your health care provider may help you choose from, depending on factors specific to you and your health.

HIV medication selection can be complicated, but the important thing to know is that there are many options for treatment. Your health care provider will help you choose the best option for you based on your individual concerns.

Why is it important to take HIV medications every day?
HIV is a resilient virus—it takes powerful medications taken regularly to keep it under control. Usually, people take a combination of three or more medications (often combined in one pill) every day to keep the virus from making copies of itself. When you miss doses of your medication, this gives the virus a chance to make copies of itself and limits the effectiveness of the medication in controlling the virus. The virus can become resistant, or immune, to the medications you take. If the virus becomes resistant to the medications you take, switching to new medications may be necessary, and ultimately treatment options may become more limited. Taking your medications every day is the best thing you can do to keep your virus levels in check and to prevent the virus from becoming resistant to the first-line medications that are easiest for you to take.

Finding an HIV Specialist
Oftentimes, people living with HIV see infectious disease clinicians or other health care providers who specialize in treating people living with HIV. Increasingly, general practitioners are trained to care for people with HIV, with assistance from specialists as needed. We also offer safe, affirming, and comprehensive primary care at Prism Health. If you are already part of a health care system, they will probably help you to contact the member services department to find an HIV specialist within your existing healthcare system.

Talking to your primary care health care provider about HIV
If you have a primary care provider or nurse practitioner, you will want to let them know about your new diagnosis. They will want to know about the new medications you’re taking and the other health care you’re receiving so they can best care for your health. Here are some tips on sharing your HIV diagnosis with your health care provider:

• Make a separate appointment to talk to your regular health care provider about your diagnosis. Don’t try to cram this in with other concerns or issues you have.
• Bring your list of HIV medications if they’ve been prescribed to you, or bring the bottles to your appointment.
• Bring copies of your lab results if they’ve been given to you.

Ongoing HIV care appointments
After the initial appointments that happen when you’re first diagnosed with HIV, you will likely settle into a routine of going to HIV care appointments every three or six months. It’s very important to attend all of your appointments so that your health care providers can find the best ways to manage your health, and make sure that your HIV medications are working well.

What to expect at ongoing HIV care appointments
Usually, your doctor or nurse practitioner will check in with you about a variety of things, like:

• Issues related to your HIV medications, including how regularly you’ve been taking them and if you’re experiencing any side effects from them
• How you’re feeling emotionally—if you’ve been sad or depressed, if you’re sleeping normally and if your appetite is normal
• If you’re getting the social support you need from other people including friends, family and partners
• If you’d like any information about the sexual transmission of HIV, ways to prevent passing HIV to other people, or other ways to care for your health and the health of your partners

Your doctor or nurse practitioner may also refer you to other types of health care providers depending on any other health conditions you have.

Your doctor might also ask if you’d like a referral to speak to a case manager or social worker. Case managers and social workers can help you access things like housing, food vouchers, alcohol and/or drug counseling and/or mental health treatment, etc.

About HIV Disclosure
You might be worried about telling others that you’re living with HIV. You might be scared or anxious about what people’s reactions might be if you tell them.

There are no hard-and-fast rules about when, how and even IF you tell the people in your life that you are living with HIV. It is completely up to you and part of your own process of adjusting to your diagnosis.

Many people find that it’s freeing to be open about their status with everyone in their life. We are fortunate to live in a time when many people living with HIV feel free to be open about their status, and find that others are supportive and understanding. Often people tell a select group of people and not others. Still others choose not to reveal their status to anyone. Ultimately, your health status is private and not anyone else’s concern if you don’t want it to be.

If you have recently been diagnosed with HIV, it might help to find one or more people in your life that you trust to talk to. Some people attend support groups in order to build confidence about disclosing their status. Other people find it’s helpful to connect with other people living with HIV at the clinic they attend. But don’t feel pressured to tell everyone or anyone right away. Do what feels right, and find understanding and non-judgmental people who will give you the support you need.

Possible Pros and Cons of Disclosure
As you think about disclosure, consider the possible good things and possible downsides to disclosure.

Benefits of disclosure:

• Emotional support Having people you can talk to about what you are going through can be reassuring.
• Stress relief Revealing a closely-held issue to a trusted person can decrease anxiety and stress.
• Functional support The people in your life may be able to help you remember clinic appointments or remember to take medications. They may even help by giving you rides to or accompanying you to your appointments.
• Understanding If someone you know is also living with HIV, telling them about your HIV status may result in them sharing how they have dealt with having HIV in their own lives.

There may also be possible downsides to disclosing your status to others. Some people do not understand things about HIV that might cause them to judge you, they might not understand that HIV is very treatable so they could be fearful for your health, or they simply may not know what to say. You should also consider any safety concerns you may have disclosing your status to specific people.

Tips on Disclosing to Family and Friends
If you plan on disclosing your status to family or friends, there are a few things to consider beforehand:

• What’s the best place for you to have a conversation about this? Do you want to meet at your place, at their place, or in a neutral public space? Is the place you pick private and safe?
• How might the person you tell react to your news? Are they likely to be understanding and supportive? If you think there’s a chance they will be angry or upset with you, and not give you the support you need, is there a benefit to telling them?
• Think ahead of time if you’re ready to answer questions the person might have. They might not know much about HIV and might have questions. You can always bring a list of resources, HIV website URLs or other information with you to give to the person you’re meeting with if you think that might help you answer questions.

Living Well
Many health tips for people living with HIV are the same as those for people who are HIV-negative. When living with HIV, taking care of your immune system is of utmost importance. This includes lowering stress and adopting healthy lifestyle choices related to diet, exercise and sleep, for instance.

Eat Healthy, Balanced Meals
We’re surrounded by food options that may taste delicious but lack nutrients our bodies need (or have too much fat, salt or sugar in them). Healthy diets can include fresh fruits and vegetables, whole grains, lean meats, nuts and eggs, and low-fat dairy products. Your health care provider will be able to put you in touch with a dietician if you’d like help managing your weight, changing your eating habits, or learning what to eat in order to maintain your health.

Exerceise Regularly
Being active is an important way to maintain health for everybody, including people living with HIV. Exercise helps relieve stress, maintain a healthy body weight, builds muscle, keeps your bones strong, burns fat and keeps your heart healthy. Aim to exercise for 30 minutes a day, five times a week.

Stop Smoking
If you smoke cigarettes, one of the most important things you can do for your health is to quit smoking. People living with HIV who smoke cigarettes have a higher risk of lung cancer, head and neck cancers, and cervical and anal cancers. They’re more likely to get Chronic Obstructive Pulmonary Disease (COPD), heart disease and pneumonia. On average, they have shorter lifespans and worse HIV-outcomes than people living with HIV who do not smoke. There is a lot of support available for people who want to quit smoking. Even reducing the amount you smoke can have a positive impact on your health. Talk to your health care provider for more information.

Reduce Harm from Alcohol + Drug Use
Drinking too much or taking drugs can weaken your immune system, which may cause you to experience more sickness. Recreational drugs can also cause your viral load to increase, particularly by interfering with your ability to take all of your medication doses. If you want to make changes to your drug or alcohol use (including reducing or stopping your use altogether), talk to your health care provider, who will be able to help you find resources and support to make changes.

Many people choose to use alcohol and other drugs for a variety of reasons. If you do choose to use alcohol or drugs, know that there are things you can do to reduce or prevent their negative impact. Harm reduction tips include:

• Buying less so you use less
• Setting a time limit before you start (e.g., “I’m going to stop drinking tonight at 10 pm”)
• Eating a meal before you use or drink
• Lowering your dosage and frequency
• Choosing the least harmful method of use (e.g., smoking can be safer than injecting)

Get Eight Hours of Sleep Every Night
Getting a good night’s sleep is important to overall health and wellbeing. Reducing stress and anxiety and avoiding caffeine and alcohol can help you sleep better.

Manage Your Stress
Mental health is an important part of overall health. Having a healthy support system of friends, family, and other loved ones can go a long way in helping you reduce the stress in your life and stay healthy and well. Many people manage stress by getting enough sleep at night, attending support groups and making time for enjoyable activities and hobbies.