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Taking anti-HIV drugs

It can take time to accept anti-HIV medication, to accept a HIV diagnosis and that the medication actually works. You also need to accept that you may need the medication for the rest of your life: 'I remember getting really upset, I remember sitting on my bed… looking at these tablets thinking… God I've got to take these for the rest of my life.'

 

He needed to accept that the medication would work before he took it correctly. (Read by an actor.)

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Age at interview: 63
Sex: Male
Age at diagnosis: 51
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And at that time, in fairness, I wasn't even regular on my medication, when even the first time they put me on, you know because I felt that I'm going to die anyway, so what's the point so… That's it, that's it, I didn't, I didn't no… So it took time and especially as I said the nurses that kept you know… asking 'have you taken at the right time?', you know. 

This sort of encouragement, and I said, 'Oh it's too much you know this is… I'm going to die anyway, why should I worry?' But later on you know confidence builds up and, yeah.

For anti-HIV medication to work, it is vital to take the medication correctly as HIV is able to develop resistance to a single HIV drug very easily. This means taking all of the drugs prescribed (usually a combinationof three), in the right doses, at the right times each day, with or without food as instructed, and checking with the doctor that other pills (prescribed, over-the-counter, recreational drugs or herbal) will not upset your anti-HIV medication. 

It was easier for people to accept their medication when they felt positive about their pills (e.g. by comparing them with taking vitamins, or seeing them as nourishing the body). People also accept their medication better when it is working, side effects are minimal and the regimen is not too difficult to follow: 'I don't find having medication morning and evening changing my life.' Another man said, 'I've experienced being ill and I'd quite happily continue with the pills rather than not because of the consequences of not taking them.' One woman said, 'I know now that I wouldn't be well if I don't take the medication… I take it like a vitamin pill now.' It could be difficult for people to accept their medication when they saw it as a constant, unwelcome reminder that they were ill.

Remembering to take medication

People we spoke to were very aware that they needed to be really strict about taking anti-HIV medications. Being so accurate with taking medication can stop drug-resistant virus developing. Missing pills or taking them irregularly increases the risk that the virus will become resistant to the drugs. Some people saw being strict about medication as a matter of life and death: 'I mean if you have to consume pills to stay alive you consume pills.'

But some people can have difficulties taking their medication correctly even when they know it is important. When there are complicating issues such as needing to take many tablets at different times, eating at certain times and travelling, people can run into difficulties. One man stopped taking his medication because of side effects and inconvenience: 'I thought I really can't do this anymore… I want my life to be good rather than to live for another 10 years… And then I got PCP (Pneumocystis carinii Pneumonia).' Another man explained why he would not give up with his medication: 'I know some people that have done fairly well on drug therapies and stopped. And become ill and died. Simply because they cannot deal with taking the drugs.'

 

He had difficulties taking his medication at a regular time even though he only took them once a...

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Age at interview: 35
Sex: Male
Age at diagnosis: 31
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Well, initially I started taking them, should have been 7 o'clock in the evening. But it just seemed to get later and later. And sometimes I'd fall asleep on the settee and actually I've totally forgotten. So I was waking up at 2 and 3 in the morning, thinking, gosh, I haven't had my pills. So I had to have a quick meal drink, so I put a lining on my stomach, and take my meds. And it just kicked in about 4 o'clock every morning. And this went on for a couple of months. And I thought I need to get this at a regular time. Because I'm fed up of waking up in the night and taking them. So I went back to try to get it earlier and earlier. And it sort of levelled out about midnight. And I was taking them at midnight [pause]. But sometimes I've just totally forgotten. Sometimes. Completely forgotten.

And you're not allowed to double up, so' Recently I tried to start taking them in the morning, see if that would be any good. And then one day I actually doubled up. Because I took one on the evening. I was due one in the evening. And I thought' It was like 4 o'clock in the morning, and it should have been like 7 o'clock. So I thought I'd try and just' you know, bring it to morning, if that'd help. Because he suggested at the hospital initially that I take them in the morning. But I'd be going out of the house dead early, forgetting them. Completely forgetting. So now I'm back to teatime, and I'm doing ok. The last few weeks I've sort of taken them at teatime.

 

Had real trouble taking his medication because of the problems he encountered.

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Age at interview: 41
Sex: Male
Age at diagnosis: 34
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It was sort of… it was a bit hard, eating at certain times and taking your tablets and having your tablets with you. And also I tend to do travelling quite a bit, so going to the States and going to places like that made it a bit harder.

How did you manage?

Occasionally I missed my dose, which then made it twice as hard because sort of the side-effects. If I miss one, my morning, and I'd just take it in the evening, my side effects tends to be not, to be stronger and more unpleasant. So you feel more ill, and then you think, well I'll just skip that, whatever. I have to work hard at taking my medication, because I'm quite easy to sort of… I can't be bothered today, or I haven't eaten enough. I'm rushing, or actually I didn't come home last night so they're not here. 

Cos I know I have to do it and I should do it but it doesn't always mean that I do do it.

 
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Not everyone has access to effective medication, and the consequences of not taking medication...

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Age at interview: 46
Sex: Male
Age at diagnosis: 27
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When I talk to people newly diagnosed, or people starting medication, they talk to me about' 'Oh this tablet's too big', or 'This is the wrong colour or it' I can't take that.' And I'm thinking Jesus I know people who'd snatch your hand off for it, and you're whingeing about taking a tablet. Do you know what the consequences are of not taking those tablets? I know what the consequences are of not taking those tablets. There's another guy tha, tha, that, that I gave a positive result to, two and a half years ago, he died the beginning of this year, with PCP. He didn't stay in contact with me much, but I got a message to say that he'd been admitted. And I went to see him and I was talking to him and I was just saying, 'For God's sake, why didn't you attend your appointments?' and, 'You know this can, this is all avoidable.' And he said, 'Well I just wanted to see how sick I could get.'

Stigma and poverty can make it particularly difficult for HIV positive people. Some of those we interviewed were not able to afford enough food to take with their medication, and were vomiting them up. Or had to rely on soup kitchens and food provided by charities and HIV support groups to get their main meal. Others had to hide all of their medication and find secret places to take their pills so as not to attract unwanted attention.

 

It was not until she moved to a better house that taking her medication was easier. (Read by an...

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Age at interview: 49
Sex: Female
Age at diagnosis: 45
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And the first time I started with that medication I was not following the times, yeah. Well because… where I was staying again, because of being afraid with the people… those people were not… they didn't have HIV and they were, all of them were against the whole thing. 

Again it's… they were not happy with me. I could not take the medication freely. I was just hiding myself so I could delay some hours and sometimes I used to skip the morning dose, yeah. And sometimes I just miss it because I was scared. Yeah. But when I moved to the address where I was settled a bit, that's when I stabilise a bit… I was following the medication.

Even people who face intense stigma and need to be secretive found ways to take their medication. 'I take it with me in my purse and I don't feel uncomfortable… I go into the ladies and I take it.' 'When someone says "what are you taking?" I say, 'I'm taking my painkillers,' said one man. 

The people we spoke to were highly motivated to overcome their difficulties in taking medication: 'I did it with all my might,' said one man. Many people we talked to reported much better than 95% adherence to medication. In recent times, some combinations of anti-HIV drugs have become much simpler to take (e.g. one or two pills once a day), and people found these kinds of combinations far easier than the earlier combinations: 'The feeding process and the timing process and the waking up process were just almost unliveable. But these days everything's moved around.'

 

With anti-HIV drugs becoming simplified it makes them easier to take. (Read by an actor.)

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Age at interview: 32
Sex: Male
Age at diagnosis: 27
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Well medication shouldn't be a problem nowadays because the medication has been simplified… if you can imagine, there are very few people who take a lot of tablets a day. These days. Because many, many of these medications have been combined now into like one tablet and so on. 

It used to be difficult in around, say up to, up to around 2000, that's when some people did take up to 20 pills and so on at a go. It was really distressing and worrying. And that's the time when it had so many side-effects like the body redistribution, your tummy, your belly. 

But these days they did a lot of research, the medication is very simple, it's just like an ordinary medicine… They keep on improving everything. 

Yeah it's, yeah, it's just like it's now food, when you start taking it you get used to it.

People are all different and live very different lives. Many people said you need to find a way to take medication in a way that works for you: 'Tailor it to your own needs.' 'It becomes easier if you begin to do things that will suit you as an individual, not a consultant,' said another. 'This is actually how life is, not what the textbooks say ought to be,' said one man. While some people are very precise with their medication, other people are flexible, while still seriously considering advice from their doctor. Being flexible seems to make it easier to take medication on time: 'As long as they are roughly spaced 12 hours apart that seems to work perfectly well,' said one man who had to take pills twice a day. 'It's not exactly the same time every day, sometimes it's 10 in the evening, sometimes 9,' said another man.

 

He is flexible and very successful with taking his medication. (Read by an actor.)

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Age at interview: 33
Sex: Male
Age at diagnosis: 28
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In the nearly 5 years since I have been diagnosed I have only missed taking meds once. I am not always on time but I allow myself a window of a couple hours and I think this is why I am undetectable today. 

I remember by paying attention to the time - whenever it gets to the assigned time it would be like an alarm in my head but on weekends if I am out or late and didn't want to deal with the side-effects of food/meds combination, I'd take them later than usual.

 

He found out there was some flexibility in his medication regime. (Read by an actor.)

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Age at interview: 38
Sex: Male
Age at diagnosis: 35
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And because I have contact lenses. Taking them in and out, I just sort of time it more or less with that. Putting my contact lenses in… So it's a kind of a similar rhythm. I mean I… When I spoke to the, the guy that did the medication he said, 'You've got to take them every 12 hours, you know. It has to be 12 hours.'

So I said, 'Well, what happens… you know, times, is it 11? Or is it 10?' And he says, 'No, I have to say 12, because people will take liberties.' I said, 'So you mean it is 10? Is it…?' And he said, and he said… I mean he told me basically as long as you're within 2 or 3 hours each time, it doesn't matter. But he can't tell people that because then they'll go 5 or 6 hours.

Many people are good at remembering to take their medication: 'I don't know how I do it, I remember,' said one man. 'It's not an option to forget,' said another. However forgetting was a problem for a number of people. After a while, taking medication becomes automatic, and people stop thinking so much about how they do it: 'I don't use an alarm anymore… my body just works with it,' a woman said. The problem then is that you might not remember even if you have taken them: 'The trouble is, I don't think about it. And then I'll be thinking half an hour later, have I taken one? Because I'm not even thinking about it.'

If drowsiness or memory loss is a side effect of the medication you are taking then the problem of missing medication or taking too much can be serious. One woman said, 'I was confused and drugged most of the time, I was taking a lot of tablets.' 'I was taking an overdose… that is very dangerous,' said another woman. Putting the day's medication into a pill box with compartments helped people remember to take their tablets.

Tips for taking HIV medication successfully

Tell health professionals about any problems with taking medication so they can help you find a way to overcome your problems.

  • Try to see pill-taking as a positive thing, e.g. like taking vitamins, having food, or as killing the HIV in your body.
  • Remind yourself that many people have to take pills every day. One man said, 'My mother takes 8 different pills for various things… You know it happens to a lot of people.' Another person said, 'I took my father's position. He has got his diabetes, high blood pressure. He is going to take those pills for the rest of his life. So there is no difference really.' 
  • If you are not yet taking anti-HIV medication, practise sticking to a timetable using vitamins or medication you are already taking for something else.
  • If you are pregnant, think about how taking your medication will increase the chances that your baby will be HIV negative: 'I'm a bit more relaxed now, but when I was pregnant it was 9 o'clock you know, I wouldn't miss it,' said one woman.
  • Use alarms on watches, mobiles, clocks to help you remember.
  • Associate pill taking with routines like meals, brushing your teeth or putting in and taking out your contact lenses.
  • Use pill boxes which group tablets into day of the week and times of the day.
  • Don't give yourself a hard time if you make a mistake since you need to make mistakes to learn how to take your medication.
  • When away from home or travelling, take enough medication to cover the entire trip, and extra medication just in-case (e.g. delayed flights). Also put some medication in your hand luggage in case you get separated from your other luggage. Work out what you will do about time differences between countries. 
  • Some countries restrict travel or residence for HIV-positive people. The USA used to but lifted the ‘ban’ in 2010 so people with HIV can travel there without problems.  If people planned to travel abroad they got advice from others first about how to travel to such countries safely as well as not get separated from their medication
 

Although his routines are usually stable he has to plan his medication ahead if he travels.

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Age at interview: 63
Sex: Male
Age at diagnosis: 48
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It's a bit of pain, the medication. It's tough because I' you do have to be obsessional about taking it, absolutely. Well probably forever, and on time. And there are a lot of pills, but I'm lucky that I have a fairly predictable domestic, not very wild life. People who are out all night or all weekend dancing I can imagine it would be very difficult. I mean when I go on holidays it's, it's tricky. I have to think hard in advance, you have to remember to count out all the tablets before going, and take enough plus some for cancelled flight say. Work out the affects of time changes which' Which as I, as I get older I find more and more muddling. In fact sometimes it's better just to make a switch and start the new regime when you get there, even if it means a longer gap for one, for one occasion I think. But I do try and compromise a bit and elide the two time zones.

Changing medication

People changed their combination of anti-HIV drugs for a range of reasons including if their HIV became resistant to their current combination, if they had bad side effects, or if there were combinations that were easier to take. Some worried that they would develop resistance to their current regimen and eventually run out of medication options. Those who already had a number of combinations and were resistant to several drugs took extra care in taking their medication so as to avoid developing resistance to more anti-HIV drugs.

 

He has few anti- HIV drug options left and so is careful about taking medication.

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Age at interview: 39
Sex: Male
Age at diagnosis: 20
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And at the moment my viral load fluctuating between zero and 50. Zero, incidentally, means below the level of detection of the test. It doesn't mean zero. If it was zero, it wouldn't be able to fluctuate up to 50. Which means my virus is still reproducing on 6 different products' sorry, 5 different products, 6 different drugs. At some point it will start to get a bit more enthusiastic as it becomes resistant. So at some point I'm going to have to change my drugs. And I've been through so many that even though new drugs are coming on stream all the time, I still don't have that many drug options. So I have to be a little bit careful about that.

Drug holidays

Generally stopping HIV treatment is not recommended. Some people tried to stop taking their medication in consultation with their doctors for a period of time - this is called a 'drug holiday' or a 'structured treatment interruption'. They found that their CD4 cells progressively fell and the HIV in their blood increased, and when they started to take their medication again side effects often returned.

 
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He stopped taking his anti-HIV drugs and his T cells quickly fell to the low level they were...

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Age at interview: 37
Sex: Male
Age at diagnosis: 24
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My CD4 count has been in the five hundreds for the last few years. And I had once it went up to 680 and then I went on a drugs holiday because I was going to be going away, and I had a feeling my body said 'No you need a break. You have been on drugs for at that point I think it was about 4 years, you need a little rest', and so I went on a drugs holiday. I went through a whole seroconversion illness and my viral load went up to one point something like a million within a two-week period. My CD4 count dropped from 600 and something down to 80 and I was in, I was ill. And so I went straight back on to the medication, it didn't work for me. That was an awareness for me. It was just at the time when they were starting to look into drug holidays and I spoke to my doctor and as far as he was concerned there was nothing to show that it could be a problem. So I did it and this happened, and it was the first time that' that reaction had ever been seen. And then of course what happened over the next year's was they started to realise that if you have a drug holiday, you need to, you need to have started your combination therapy at a time when your CD4 count was high enough. Because what happens is when the HIV comes back, your CD4 count will often drop back to the level it you started at. So of course we didn't know about that at that point, it wasn't' the research hadn't been found out about. So since then it has been a matter of slowly building back up from that 80, and it was a long slog.

 

He takes 'drug holidays' and lives with the consequences.

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Age at interview: 57
Sex: Male
Age at diagnosis: 39
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To start with nothing happens. CD4s and viral loads remain much the same. Then of course the CD4s start to drop, the viral load starts to go up, which is fine… you know, it should be expected, clinically. When I start to feel lousy, or when my partner or my mates or friends start to say I'm getting really ratty, and really shirty and a complete prat to live with, coupled with the numbers, I think oh oh, now is the time to start back on the pills. Last time round I did it, I took too long, I took 18 months off. Which was too long. And the interesting thing about holidays is that you have this wonderful thing called 'cell memory'. In as much as the cells seem to remember what the drugs were doing, or what the virus was doing. After 18 months those cells seems to have vanished. So when I went back on to the very same pills that I'd stopped taking before, my body didn't remember them. And so for the first fortnight it was a bit, it was like a… what would you say a drug virgin. I was vomiting, I got night sweats, I ached, I was ratty, I had diarrhoea.

Last reviewed May 2017.

Last updated May 2017.

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