We have collected a swag of hints, tips, and handy suggestions for maximising adherence to HIV medications. The suggestions on this page are drawn from fact sheets, research and the lives of positive people across Australia.
Starting a new combination…
- Know your drugs. Ask your doctor, pharmacist or treatments officer for a fact sheet which describes the dosing and dietary requirements and potential side effects for each drug in your antiretroviral combination.
- Try to make your drug routine fit your lifestyle, not the other way around. Before starting a new treatment regimen, talk with your doctor and think about how the drugs will fit into your lifestyle. For example, if you’re working and uncomfortable taking medications at work, a three-times-a-day regimen may be problematic.
- Work out the timing for your doses in advance. If it’s a twice-daily combination, ask your doctor whether you can take the doses at bedtime and in the morning, or whether the doses need to be exactly 12 hours apart. If you take your evening dose at 8pm will it be convenient to take your morning dose at 8am?
- Talk to a HIV-experienced dietician if your treatments have specific dietary requirements. If you need to have a ‘high-fat’ or ‘low-fat’ meal, what does that mean? Dieticians have great tips on meeting your food requirements even when you’re not hungry or feeling unwell.
- Have a ‘dry run’ before you start. For a week or so, take a daily vitamin capsule or a breath mint at the times and places you’ll be taking your HIV medications. Keep track of how you do and whether your proposed schedule needs adjustment to make it work from day one.
- Know the most common side effects for the drugs you’re taking and find out what you can do to alleviate them if they occur. Have medication or complementary therapies on hand for diarrhoea or nausea. Most side effects disappear, or at least reduce in severity, after a while.
- Be aware of any serious side effects your drugs could cause. If you think you’re experiencing these, contact your doctor immediately but don’t stop taking your medication unless he or she advises you to.
- Medication containers such as dosette boxes can help if you have trouble remembering which pills to take when, or if you sometimes forget whether you’ve already taken your pills. Available from pharmacies in different configurations, they make it easy to count out your pills ahead of time. Tackle boxes and plastic boxes available at hardware stores can be used for the same purpose.
- Some medications need to be stored in the fridge; it’s usually OK to store other medications in the same place as long as they stay clear of moisture. Indinavir (Crixivan) capsules are especially sensitive to moisture, however, and should be stored away from other medications. Medicines which need refrigeration can safely be taken out of the fridge for up to several days if the weather’s not too hot. Ask your pharmacist if you’re not sure.
- Small pill boxes are invaluable if you’re going out and you need to carry medication with you. Doctors and pharmacists often have free pill boxes they can give you. Get a few in different shapes and sizes and get into the habit of having meds on hand for when you need them.
- Beepers (available at pharmacies) and alarms can be helpful, although they can be indiscreet. Electronic organisers and some mobile phones have reminder alarms.
- Ask your friends or partner to help you remember to take your pills. Having someone ‘nag’ you occasionally doesn’t just jog your memory, it gives you a chance to discuss how you’re managing and talk things through.
Get into a routine…
- Put your pills somewhere you’ll see them and be reminded to take them – by the bed or in the kitchen or bathroom (but keep away from moisture). “I put them in a dosette box and keep it in the fridge so they’re unavoidably in my face at breakfast and dinner,” says Max. “I take with glass of V8 so I’m getting my vitamins as well. I haven’t missed a dose since I started this routine.”
- “I take pills twice a day; I put the second dose into a small pill bottle at the same time I swallow the first,” says Eric. “I always know whether or not I have taken a dose. After many years of taking pills almost automatically, I have occasionally been unable to remember for certain if I had taken them at the regular time an hour or two after the event.”
- If you find that the daily ritual of opening bottles and counting out pills provides an unpleasant reminder of your HIV status, consider using a dosette box and counting out a whole week’s supply so you expend less time taking pills on a daily basis.
- Keep a diary to record your successes and identify any problems. If taking your pills makes you feel bad about your health, more conscious of being positive, or worried about side effects, write these thoughts down and discuss them with your treatments officer or a peer group.
- It may be harder to stick to a daily routine on weekends and holidays. If you want to stay in bed longer on Sunday morning, ensure your pills and a bottle of water are in your bedside table so you don’t have to get up to take them.
Out and about…
- “If I’m going out to the bars I generally take my pills with me in case I’m out late or I get an invitation back to another guy’s place,” says Eddie. “It’s easy to go into the bathroom and pop your pills discreetly and you don’t have to let it get in the way of having a good time.”
- Carry a spare dose with you for emergencies – if you’re out for the day or at work and you remember you’ve missed your morning dose, for example. If you can, keep a spare dose at work for this purpose.
- “If I’m going out I take my tablets with me in a small vitamin bottle,” says Marty. “It works for me and I rarely miss a dose.”
- If you regularly stay at someone else’s place, keep a supply of pills there.
- If you drink or take drugs it’s easy to forget to take your pills. Plan ahead and remember. Carry your next dose with you, even if you expect to be home when it’s due, and you can stay out a little longer if you’re enjoying yourself.
- If you’re worried about interactions between your medications and recreational drugs, information is available to help you make the right decisions and keep on track with your treatment. See ‘Getting smart with substances’ (PL, Feb-Mar 2004, available on our website) or ask your doctor or treatments officer’s advice.
- “I take a supply of meds with me in the vitamin jar in my bag which I carry round with me just about everywhere – work, uni, shopping, etc. (The bag also has my mobile, diary, toothbrush and condoms – it’s a bit of a ‘survival kit’),” says Greg.
- If you need to have a supply of pills at work or while staying somewhere you’re not out about your HIV status, you can transfer your pills into an empty vitamin bottle or similar. Be careful, however, if there are children or others around who may mistakenly take your medication if it’s stored this way.
- When you’re away from home you’re out of your usual routine and it’s easy to miss doses because the usual memory triggers are gone. Make an extra effort to remind yourself and not miss doses.
- Taking pills on long-haul flights across multiple time zones can be a nightmare. Try switching your medications to the new time zone a few days before going away while you’re still at home and in a familiar environment.
- When you’re packing for a trip away, leave nothing to chance. Always triple-check that you’ve packed all your tablets and carry an extra supply in case you’re away longer than expected.
- Always pack your medications in your carry-on luggage, not in your checked luggage which might get lost or delayed. If you have a lot of pills to carry, ask the airline if you can have an increased carry-on allowance.
If you miss a dose…
- Take it when you remember, unless it’s close to the time for your next dose. Take your next dose as scheduled.
- Try to make sense of the reasons why you missed the dose and develop a strategy to prevent a recurrence.
- Don’t panic and don’t beat yourself up. Almost everyone misses doses from time to time and, as long as you don’t miss too many, you’ll be OK.
- It takes time to settle into a routine, but it does get easier and taking your medications can be as routine as brushing your teeth. “Now my mind is on auto-pilot,” says Chris. If new meds or new timetables have to be dealt with, I bend my reality to accommodate the meds’ reality. Seems to be working so far…”