It was April 2016 and I was a backpacker, living and working on an orange farm in regional NSW. I had been diagnosed with HIV four months earlier with issues of HIV associated neurocognitive disorder (HAND) so my brain had developed minor memory problems.
After a few weeks, my HIV doctor thought it was best that I start taking antiretroviral medications (ART) as soon as possible and wrote me a prescription. Now, four months later, after the conclusion of a shouting match with the farmer over an electrical heater, a thought suddenly crossed my mind: ‘Did I take my medication last night?’ The problem? I couldn’t be certain and I began asking myself questions about the repercussions of missing a dose. Do I double dose? Will my viral load become detectable again? Will my CD4 count drop?
Fear and concern began to build and I became frustrated that I couldn’t remember. Even though my brain function had improved with ART, I still experienced minor memory problems and with the previous heated argument I had with the farmer, my brain was put under a certain amount of stress.
Apart from symptoms of HAND, there can be other reasons why people may have missed their ART. This could be fear of side effects, lack of routine or it could be that they’re tired of their medication regime.
In these types of situations, it’s best to speak with your health care provider as they will be the ones you have developed a trusting relationship with and they will be able to guide you through this scary situation and give you advice and support.
So I got in contact with my nurse and she reassured me that everything would be okay. As long as it was just the one time that I missed my medication then I should have nothing to worry about. I could just continue with my next dosage as usual.
If you miss a dose within an eight to 10 hour window, most ART medications can be taken when you remember and then you can continue on with your regular dose at your scheduled time. If your missed dose goes over 10 hours then it is a good idea to skip that forgotten dose and then take your next normal dose at the next scheduled time. When I asked my nurse if I should double dose, her words were ‘don’t’. This can put pressure on your liver and kidneys and can affect the way your ART medication metabolises in your body.
If double dosing accidentally happens once or twice then your body will be able to excrete the extra dosage within around 24 hours. But if that were to occur then it’s always a good idea to inform your nurse or GP anyway for peace of mind.
Everybody is different when it comes to using techniques to take medications each day. It can be daunting for some people but it is important for yourself to find a routine that bests suits you to keep it simple and with less stress.
My routine is taking my ART every evening at 9pm. I have an alarm set on my phone to remind me and this holds a lot of advantages. If I’m going on a night out, I would take it beforehand, eradicating my worry once I’m out on the dance floor. Another advantage is taking it before bed as I can get tired after taking my meds. There are other ways to help you get into your own routine when taking your ART medication.
Keeping your medications in a place where you will remember can help. You could try and link your medication in with other daily routines such as meal times, a particular TV show or tea breaks at work. Using pill containers can help you if you are taking more than a few tablets a day or you can keep a diary or pill planner for you to tick off each dose after you’ve taken it.
It can be useful to make sure you collect your prescription with plenty of time to spare so that you have a good supply of your ART available and you’re not stressing over starting your next bottle.
We are human after all and we can make mistakes. Missing the occasional dose can be ok, however being all over the place with your medications can allow resistance.
If this process occurs then your doctor would look into putting you on a new form of ART. This process can allow anxiety when changing medications, especially when thinking about side effects and having blood tests. But try not to stress or worry, we are all in the same boat and there is always support and ways around this issue.
If you need any support around medication or have questions about your antiretroviral medications, you can always call and speak to someone else living with HIV to brainstorm some solutions – (02) 8357 8386, 1800 245 677 (freecall) or email firstname.lastname@example.org
Published in Talkabout #198 August 2021