Challenges of anti-HIV drugs
With improvements in anti-HIV drugs since 1996, many of those we interviewed reported coping very well with their medication. They said they only had mild side effects or none at all. Some people noticed only the benefits of medication, such as feeling more energetic: 'I think all my energies have come back,' said one woman.
However, all medicines can have side effects some of the time. Under certain circumstances (e.g. if the immune system is already weak, if you have had a break from medication) side effects are more likely. Some people experienced more distressing side effects from their anti-HIV drugs than others and these are discussed below but it is important to remember that with newer treatments many people do not get such side effects.
Side effects often occur in the first few weeks of taking a new combination of anti-HIV drugs, but they can begin months or years later. People anticipated having side effects and so sometimes worried about starting their medication. Some people tried to take it easy when starting medication, and even started their medication while on leave from work, just in case the side effects were severe. Many people found that side effects decreased or went away in the first month or so of taking anti-HIV drugs.
At first he was scared of the list of possible side effects but his side effects settled down in...
Well, initially just reading the bloody list of side effects was scary. I thought, do I really want to put up with all that? Or shall I just not take the drugs? You know [laughs]. So that was quite off-putting at first. But then I thought, I have to. So I started taking them. And it, it took 3 or 4 days before I could actually start taking the medication. I was quite scared. Because of things like lipodystrophy and liver problems and all sorts of pre-cancerous cells and all sorts of bad stuff. So it really scared me initially. But when I first started taking them, terrible. I had diarrhoea, terrible, for about a month. I was pissing out of my arse. I was being sick. It was… the, the actual contractions were so powerful it was just painful.
But I was, I was constantly on the toilet for about a month. Then it all just settled down. And I've been fine since. I get the odd metallic taste in my mouth if I take them on an empty stomach, but they are fine, the drugs are fine.
Side effects are usually caused by an unwanted effect of the drug on the body, or an allergy to the drug. Suspected allergies (with symptoms like rashes and fevers) require prompt medical advice, since they can be very serious. Everyone is different. While one person may experience no side effects from a particular anti-HIV drug combination, someone else could have a severe reaction.
Common side effects people reported included diarrhoea, nausea, going off food or certain food dislikes, vomiting, increase in cholesterol, reduced libido, rashes and skin changes, numb or painful hands or feet, difficulties tolerating alcohol, memory loss, and loss of appetite, headache, tiredness and sleep disturbances. For instance, a few people reported psychological effects that included panic attacks, feeling suicidal and disturbed sleep. Some people had nightmares, others enjoyed vivid dreams: 'I felt I was able to go in and stop them becoming negative [they were like] fabulous technicolour journeys.' Some people had to change the time they took their medication, or change to another drug to get adequate sleep.
She couldn't sleep so tried changing the time she took it, and eventually her combination was...
The Sustiva (efavirenz) made me dream abnormally! [Laughter] I dreamed seeing snakes coming to me, I had nightmares. I dreamed seeing my dead relatives… I think maybe it's because I was scared of the medication.
But it was difficult… Then after, the next morning and the next day again, oh the other thing, I couldn't sleep. Maybe it was the first time, I couldn't sleep the whole night because of the Sustiva or maybe it was my fear I don't know, I only slept in the morning. And when I, in the morning I was feeling very tired. Getting up from bed was hell. Oh, then I phoned my consultant and my clinical nurse to tell them that I had, I was dreaming too much abnormally. They told me that it is the Sustiva.
Then they told me that I should change the time of taking. Maybe if you take it a bit late, it would help. [Laughter] Yeah I tried that, it… it helped but, maybe it helped halfway because I, I could now dream four days a week [laughter]. Then they changed the Sustiva to another drug.
Then I was so surprised…. I could sleep just like a normal person. Yes. I really changed. Getting up well, sleeping time, and I was… I wasn't moody because, the dreaming was stressing me very much, I was just a very sad person. I was a very sad person.
Lipodystrophy - changes in fat on the body - affected some people and is a side effect of some of the older anti-HIV drugs. These drugs are now avoided as much as possible for long-term use. Lipodystrophy could involve fat gain (e.g. around the belly, between shoulders, breasts), fat loss (e.g. on the face, buttocks) or both. Changes in fat on the body can be very distressing. Lipodystrophy affects the appearance and can make HIV status visible to others: 'We all have our vain side. And you want people to say you are sexy,' said one man who had fat deposits on his belly. 'All I need to do is go into a gay bar and I can see who is… who's been positive for a while because you see it in their face,' said another man.
He finds his lipodystrophy hard to accept.
And I don't really have to modify my diet I think. It is uncomfortable sitting on hard seats for a long time because I've lost all my natural padding. My partner says that I had a nice bottom once but, but there you are... You can't have everything.
And how do you feel about that?
Well. I suppose again it's an unpleasant thing that I block. But I don't, I would like to… I'd like to look great, to be wonderful. Stunning. Handsome, I've never been, I've never felt that I was, though looking back at photographs of 30 years ago I, I would have fancied me! But, there we are, at the time you don't know.
At the time of some of the interviews in 2005, experimental treatments were being used to treat fat gain. One man thought that testosterone patches prescribed by a doctor slightly reduced fat deposits on his back. While some people thought diet and exercise did not reduce fat deposits, some disagreed: 'I started to lose weight in my face… I never had any fatty deposits anywhere else, but I credited that to the exercise I was doing'. Some people had successfully used New Fill (injections of polylactic acid) to reverse the appearance of facial wasting. A healthy diet and exercise can help.
Found that exercise helped her with fat on her tummy. (Read by an actor.)
I've changed… tried to change my lifestyle a bit because when I started taking medication, I used to be a size 12. I went up to a size 18 within three months, yeah, it was really, really quick. So… Oh it was very difficult because then my body changed and that is, that was the most difficult thing and still is a bit difficult now because I've suffered, yeah. I do get a bit of lipodystrophy, yeah.
And when I did put on that weight, again within three months, it was just the weight and then a year after, two years after I started noticing the difference… I mean my legs are very thin down towards my ankle. And I never used to have thin legs. I'm always struggling with fat around my tummy.
Now because I've started going to the gym for the past three years now, or two and a half years now, I've been going to the gym regularly, and trying to do sit ups and everything. So it's really changed now, I've really changed now… Yeah, it's really helped. I lost the weight, went down to a 12.
Some people could put up with side effects if they anticipated problems and they could see that the medication was improving their immunity and making them feel better. It could be particularly difficult to cope with side effects after feeling well without the medication. Side effects could be emotionally wearing: 'I thought, I've had enough of this,' said one man. And emotional side effects like anxiety and panic attacks could be particularly hard to manage. For instance, one man had panic attacks and suicidal urges on his treatment.
He put up with diarrhoea and painful feet on his new combination because it worked so well.
And then I went and… the then standard was d4T (stavudine), 3TC (lamivudine) and nelfinavir. And I thought right that's what I'm going to take, I changed a month later to d4T, 3TC and efavirenz. But there we were, I went on it and I took it and my viral load went down to undetectable very quickly, my CD4 count started to climb up but I started to get side effects. The first thing was terrible diarrhoea from nelfinavir, appalling diarrhoea, like you know, it really was like having a… it's like a tap turned on in my bowels. And it wasn't, it didn't lead to incontinence or anything like that but it was like whenever I went to the toilet, it was increased frequency. And then pain in my feet which I thought might initially have been sort of a running injury or something like that but then it just became unbearable and I had to go and see a palliative care doctor for. But I was so reluctant to change my medication because it worked, it really did work. Look at this, my CD4 count was higher now than it had been when I was first diagnosed, it was 550, it had never been that high, my viral load was undetectable. I'd go back the next time, your CD4 count's 700, your viral load's undetectable. So you know, this carried on for ages…
If you are optimistic yet anticipate side effects and illnesses you can cope with them better.
I mean it helps if you're an optimist basically, as opposed to the opposite. I mean, if you're too much prone to sort of giving in too easily and doom and gloom and nothing easily and nothing else is on your horizon, then you're going to have more of a problem with these pills because there will inevitably be days when one of the pills is upsetting you in some way or another. There will be problems with occasional side effects from them, or indeed some of the HIV symptoms may themselves blow up, and it takes you a little while to get treatment for the individual symptoms, and for these… for the treatment to take effect upon those things. So there's no point being worried, you just have to accept that…
People also decide for themselves what is and what is not a side effect of their medication. It can be difficult to know sometimes what is due to the drugs, to HIV or even to something else. One man said, 'I don't know whether it is a side-effect of the medications I am taking… I have lost my voice.' Another man said that while 'The medication does change your libido,' he spoke to his doctor, 'And we came to the conclusion that was a lot to do with my state of mind.'
Is reluctant to view her experiences as side effects.
Maybe I have side effects and… Maybe the frame of mind I have, I don't look at the side effects I have. Because maybe people will say, 'Oh, you get depressed.' But then everybody gets depressed.
I get tired. Everybody gets tired. I get into a bad mood. Everybody gets into a bad mood. Every now and again, I can't sleep. Sometimes. But everybody does. So I don't look at that as side effects. So as far as I'm concerned, I don't have side effects.
Because for me a side effect would have to be something that only I'm getting, because of the medication, and other people don't get.
So I don't have side effects.
Reducing side effects
Some people put up with side effects that others would not tolerate. However, the side effects people experienced could often be eased with other medications (e.g. anti-nausea tablets for nausea) or the doctor 'tweaking' the combination of drugs. So the advice was 'tell your doctor about your problems!'
Asking the doctor to change the medication could sometimes be an effective way to reduce side effects like lipodystrophy or painful limbs. One man who had severe side effects got his doctor to change his medication: 'I haven't looked back since… I didn't have one side effect.' Women who were thinking about having children asked their doctors about medication that would reduce the chances of side effects for their unborn babies.
People also found personal ways of reducing side effects while working with their health staff, such as adjusting when they ate food or when they took medication. One man discovered 'If I take my tablets later in the evening, I know I won't sleep. So I have to try and make sure I space them out when I take them in the day'. Others who felt dizzy from their medication took it just before going to bed. One man felt exercise was the reason he had fewer side effects than other people he knew: 'It detoxes your body', he believed. Others found that such things as acupuncture and hypnotherapy could reduce anxiety and perceptions of pain. Still others decreased or stopped their alcohol use, and found this lessened their side effects.
He believes that resting and avoiding certain foods helped his medication to work better. (Read...
I mean some of my friends have said that they think that's because I didn't fight it at the beginning. So when I, when I took the drugs, I just, I just kind of accepted that for a few weeks I wasn't going to be going out a lot. I wasn't… I mean I, I don't want to make it sound as thought I was in bed all the hours. I wasn't… It wasn't that bad.
But I wouldn't, I wouldn't be going out late. I wouldn't be going out drinking. I didn't want to drink. I think when you're… you have those drugs your body's kind of saying what it wants to have. Maybe the reason I didn't like to have milk or yoghurt's because my body just didn't want, didn't want anything too fatty.
It didn't, did not want any alcohol. Just the thought of it was kind of make you feel sick. So it's probably those things your… I know your liver and your kidneys trying to deal with the drugs, it didn't want any… dairy products and alcohol being added into the mix. It'd just be too much. But after 3 weeks it started getting better...
And I think, because of the quick response, it showed that I was, I was right not to fight it. Because other friends of mine have had medication, and thought, right, I'm not going to let these drugs take over my life. So they're taking them. And even though they're really tired and… they're going to… they insist on going out clubbing. They're going to go out. And it's taken them 6 months or so to come down to undetectable. Really long. Like really slow. And not feeling good.
If people attend a HIV clinic for treatment they will usually have regular check-up appointments to be monitored for potential problems with their anti-HIV drugs. For instance, one man on long-term medication was found to have glucose intolerance, low testosterone, raised cholesterol and osteoporosis. However, while good for picking up potential problems before they become serious, tests can also lead to worrying false alarms.
An irregular heart beat and high cholesterol were treated as potentially serious side effects.
I mean there are still biomedical issues actually. One of the big ones was that… and actually it did turn out to be very benign but I had a couple of elevated cholesterol results and I think they were just probably because I had a croissant or a fat cake before I went in to have my blood taken that morning because I was starving so I'll take my tablets. And I also developed a very, for some reason I developed an irregular heartbeat and it was taken incredibly seriously. And I felt as though I needed to go and see a cardiologist and things like that, like they do, you know not just ECG, the ECG picked up on the irregular heartbeat as well and then having to do like exercise ECGs and have this 24 hour tape on me. You know it was like Jesus you know, I'm in my early 30s and you know, and I'm very fit and I shouldn't actually be having to walk around with a 24 hour tape measuring my heart rate. And it turned out to be something called bradycardia, which is actually a function of having a low heart rate, a resting heart rate from exercise.
Some people - particularly those who started anti-HIV drugs earlier on in the HIV crisis - had been on a number of different anti-HIV drug combinations and had developed resistance to some combinations: 'I have probably built up drug resistant strains to HIV because we were not very adherent to taking medication in the early days,' said one man.
Because anti-HIV drugs are relatively new, it is not clear what the long-term effects of taking them will be. Some people who had been on medication for many years tolerated them well, while others struggled. Those who become resistant to the main classes of anti-HIV drugs (NRTIs, protease inhibitors, NNRTIs) might need 'salvage therapy' using many different drugs for the treatment to work well.
He has 'male menopause' and chronic fatigue which may have something to do with long-term anti...
Sort of I'm nearly 40. And I, I basically know that I, I am menopausal. Because I'm not producing testosterone. Even though I've got testosterone and I've got a bit of sex drive. And then to be told I've got osteoporosis. It makes me feel like a little old lady.
[laughs] And I must admit I was incredib-… That's one of the few times that I've been adamant that I haven't got something. 'No, I can't have that.' Because I do weight bearing exercise. And I take testosterone. And I have a calcium rich diet. And, and of course it came, [laughs] came back as being positive. But yes, really it's just lack of sex drive, tiredness. But it's hard to know… I mean I, I suffer from chronic fatigue anyway. And when you get honest doctors… At the stage that I'm at anyway, because, as I said, I've been positive for near, nearly 20 years. Next year it'll be 20 years.
April next year I will have been positive for the same duration that I've, I've been negative before. So 20 years negative, 20 years positive.
And honest doctors will say to me, 'Well, you may have the, the chronic fatigue because of the time that you've been positive. Or because of the different drugs that you've taken. And, and the, the fairly heavy drug load that you take.'
Last reviewed May 2017.
Last updated May 2017.