Tips to take your HIV medication every day

HIV medications, also called antiretroviral therapy (ART), are usually a combination of two to three HIV medications normally combined into one tablet. There are a number of different strategies that people living with HIV use to when taking HIV medication:

• Work your medications into your sleep, work, or school schedule. If responsibilities at home interfere with medications, it’s important to discuss this with your HIV doctor. Plan ahead for weekends, vacations and other changes in your routine, which might also include ‘party’ weekends, social events, or family obligations.
• A weekly pill organiser can make it simpler and easier to remember to take medications. A pill organiser makes super quick to be sure if you’ve taken your medication for each day.
• Take HIV medications at the same time as another activity, such as brushing your teeth, or having lunch, dinner or breakfast.
• Using an alarm on your phone, watch or computer as a reminder.
• Keep a small back-up supply of HIV medication(s) in a handbag, backpack, or at work, in case you can’t take your medication(s) because you aren’t at home.
• Taking HIV medication in the evening or at bedtime, even if your bedtime varies over a couple of hours week in week out. In this way if any side-effects occur, you’re more likely to be asleep.
• Some of us make use of rituals, such as taking medications as part of another ritual, like a morning cuppa tea or coffee, ‘wind-down’ rituals like walking the dog at night, or other lunchtime rituals at work.
• Your HIV doctor will sometimes ask you to bring your medication bottles with you to an appointment. This can be a good way to be sure that your medication and dose is correct. Ask for a written copy of your treatment plan.
• If you experience any side-effects like nausea or vomiting, contact your HIV doctor immediately.
• Alcohol and drugs can mess with your medication schedule. Get in touch to talk to a Positive Life Peer Navigator (someone else living with HIV) to explore some useful, judgement-free options that work for you.  (02) 8357 8386, 1800 245 677 (freecall) or email contact@positivelife.org.au
• When you need to refill your HIV prescription, call your pharmacy several days beforehand to be sure they’ve got your HIV medication in stock.
• Avoid interrupting your supply of HIV antiretrovirals and see your HIV doctor a week or two before you run out. Call your HIV doctor’s office immediately if you can’t get your prescriptions filled or if you’ve run out of medications.
• If your HIV medications look different from how they looked previously, or if the dosage is different from what you recall, contact your pharmacist or HIV doctor immediately.
• If you feel you want to stop your HIV medication or change the type of HIV medication your doctor has prescribed, always contact your HIV doctor. Feel free to discuss how you’re feeling about your HIV medication whenever you see your doctor.
• It’s better to use one pharmacy for all your medication needs. If you have to use more than one pharmacy, make sure each pharmacy is aware of all the medications you’re currently taking.

Once you start taking HIV antiretroviral medication, it’s important to keep taking them as prescribed (adherence) for the rest of your life. As long as there are no uncomfortable side-effects, HIV antiretroviral medication will benefit you by suppressing HIV which lowers the amount of HIV in your body. Eventually, this can become so low that it doesn’t show up (undetectable) on a blood test. When this has continued for at least six months, this is called having an undetectable viral load (UVL).  When you take HIV medication daily as prescribed, and get and keep an undetectable viral load, you also have no risk of transmitting HIV to an HIV-negative partner through sex.  Your risk for other effects of living with HIV such as inflammation, are significantly lowered as well.  In this way, you can expect to have a long and healthy life like anyone else without HIV.

Stopping your HIV antiretroviral medication, missing doses, taking your antiretroviral medication late or taking only part of the medication has several possible effects:

• Your viral load (the amount of HIV in your body) can increase. This will also make it easier to transmit HIV to your sexual partners.
• Your CD4 Tcell count, also called a CD4 count, will decrease. A low CD4 count means your risk of HIV-related complications, developing an HIV-related illness or even death goes up.
• The virus can become resistant to treatment (also called ‘treatment failure’). As the virus becomes resistant, this means your current antiretroviral treatment doesn’t work as well. There are many HIV antiretroviral medications so switching medications can help, however in some cases, if one antiretroviral medicine stops working for you because of resistance, several other related medicines may also not work. This includes HIV medications that you might have never taken before.

For some people, taking HIV medication every day can be daunting, hard and even demoralising.  It’s important to keep taking your HIV medication, as the benefits far outweigh the risks or any mental discomfort we might feel.

Conversations about your HIV medications, any side-effects and how well the antiretroviral medication is working can be discussed with your prescribing doctor and pharmacist.  If you are struggling with your HIV medication, reach out to a Positive Life NSW Peer Navigator (someone else who also lives with HIV themselves).  We can talk through things, so get in touch on (02) 8357 8386, 1800 245 677 (freecall) or email contact@positivelife.org.au

What if I forget to take my medication once or twice?

Forgetting to take our medication is far more common that you think. Many of us living with HIV have occasionally forgotten to take our HIV medication, especially when we’re out of our usual routine, after a ‘heavy’ weekend or when life gets that little bit busier.

Missing doses can be stressful. It’s normal to feel anxious about missed doses. If you notice that you’re missing more than one dose each week, it’s important that you talk to either your HIV doctor or nurse, or get in touch with a Positive Life Peer Navigator (someone else living with HIV) to talk about what’s going on for you with someone else who understands.  (02) 8357 8386, 1800 245 677 (freecall) or email contact@positivelife.org.au

If the way you take your medications daily is causing you anxiety, think about changing things up. Can you try a different routine?  It’s better to be comfortable taking your medications, than missing your doses constantly because you are forgetting to take it at the time you’ve set yourself.

If you have missed a dose, and it’s less than 12-14 hours before the next one, take your dose as you normally would for that day.

If you have missed a dose and remember too late (more than 12-14 hours before the next one), simply skip to the next day and take your medication when you would normally take it.

If you’re missing your doses a lot bring this up with your HIV doctor, who might be able to change your medications to fit your health care needs and lifestyle. If you’re missing doses a lot or you just want to chat more about medication, adherence and HIV in general, get in touch with a peer (someone else living with HIV) at Positive Life NSW on (02) 8357 8386, 1800 245 677 (freecall) or email contact@positivelife.org.au