For many years people with HIV had limited treatment options. AZT was the first antiviral treatment and was used on its own (monotherapy). The side effects of high dosage AZT at that time put many people off antiviral treatment. AZT was followed by other drugs such as ddI and ddC. In 1996 the encouraging results of the first trials of protease inhibitors were announced.

Since that time, both the range of treatments options and the effectiveness of treatments have vastly improved. Combining several drugs (combination therapy) is now the standard of care for HIV positive people. While this has had a profound impact on people’s ability to remain well, it has had a sometimes heavy price in side effects. In this section we talk about our decisions and experiences around treatments.

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© AFAO 2003

Ian

I get up in the morning eternally grateful for my second chance. I’d say about 70 per cent of my friends died before we were 40, so I didn’t expect to see it. I was only diagnosed in 2000, but I had the symptoms and was going down the same path as them for ten years prior. I was aware, but just in denial.

The decision to go on treatments was made for me really. In 2000 I was working really hard as a tour director. I was taking this big group around and I collapsed in a mall. They got me home and into hospital. People wanted me to take the drugs. I was getting major pressure from my family.

I was very anti medication because all I’d seen, up until about 1995, was people dying. I had just blocked out anything to do with the disease and I wasn’t aware of the progress that had been made. The only thing I’d seen used was AZT and it didn’t work for the people I knew. I just saw it as all poison.

About six months down the track, I’d got down to 55 kilos (I’m 6 foot 3). I was very sick and I was asked if I’d go on a trial. I didn’t care, I’d really put everything to bed. I’d said goodbye to everyone. Then I went on the drugs and I started getting better again.

Gavin

I’m not on treatments now. I was on them but I stopped. I felt trapped. I felt like I had to continually live by the clock and make sure I had enough tablets whenever I left home. I couldn’t just stay at a friend’s place and have dinner if I didn’t have my medications. Psychologically it was sometimes a real head fuck. You get up in the morning, you have to have your treatment, you had to do this and you had to do that. Once I was going through the airport and – well, because I have an Arabic surname I get pulled up. I had an Insulin pen in my bag, for my diabetes and I basically got pulled away from the security screening. They went through my wet pack. They were holding up my HIV medications in a public arena and wanted to know what they were. I thought: hey, I don’t have to discuss this with you. Unless you want to take me into a private interview room I’m really not going to tell you what it’s about.

I got so tired of disguising my treatments, especially when I was at bigger family events. I didn’t like how the treatments made me smell, and I didn’t like the taste they’d leave in my mouth.

I just got to the point where I didn’t want to deal with all that any more. It was a bit of a challenge. Well, it was a bit of a risk really. My doctor and I looked at a three-month break, but when that was over I went back and I said: ‘I want to take another three months. I can make this decision. I’m allowed to, it’s called informed choice. I don’t want to treat’. At first my T-cells took a dive but nine months down the track we realised I was actually plateauing out. Now my viral load has dropped down around undetectable and my t-cells were up around a thousand.

Marie

I have been incredibly well. I’ve had no illness whatsoever. I’ve had some treatment side effects while I’ve been on treatments, which I only took during pregnancy. I’ve had small things like skin problems and sinus problems which I never had before. I’ve realised that we are so individual, not one combination works for everyone.

I’m co-infected with hep C but I’ve realised that there’s been so much focus on my HIV that the hep C has been pushed into the background. Obviously, if my liver’s not working, my HIV drugs can’t work. I go to a doctor who addresses both of those things. I’m not taking anything, although I know that the few drinks I have are a big no-no when you have Hep C. But that’s my one little treat I suppose.

Dave

Starting a combination is always a bit odd. You get diarrhoea and all that sort of stuff, but that stabilises after a while. You get used to that. I don’t have any trouble with side effects now. My T-cells are up to 1100 and my viral load is under 50.

When I was living in the country I’d still come back to Sydney to get my medication, because they’d give you really funny looks at the hospital. Here in Sydney they just dispense it like lollies. They don’t care because you get lost in the crowd, but out there you stick out like sore thumbs.

Rob

My attitude in relation to any illnesses or diagnosis has been okay: let’s get on with it. Let’s get the treatment on its way. Let’s be aggressive in the treatment. Let’s make sure that I support myself entirely with any natural therapies that I have access to. Let’s not be too stressed out about it.

I believe firmly in linking in with a naturopath who you really trust, who understands HIV. It’s also good to link in with a really good personal trainer or gym to make sure of your physical fitness.

Harry

I am really clear about the fact that treatments are one of the reasons I am still here. I believe complementary therapies can help with some of the side effects. I balance my therapies with my GP, I always tell them what I am taking and I have been taken off certain vitamins because my prescriber said it would interact with my drugs. In exploring complementary therapies, you need to consult with other people. The best source of information is other positive people. We are incredible resources about HIV management because we all try so many different things to get ourselves well.

Jim

The main reason I took the drug holiday was that I had a resistance test and found that I had resistance to two of the drugs, so my combination wasn’t doing anything. Also I wanted to have a change from having to take all these tablets and have a break in the routine. On my holiday, I cut out everything, even the vitamins. That was just for the mental relief, to be able to go somewhere overnight and not have to take pills with me. It was great.

It seemed to be going fine and then all of a sudden my T-cells took a dive and I became sick. I was very tired and lethargic. This was the first time I’ve really been laid up in bed. TV noise hurt, light hurt me. I lost a bit of weight. It was a real shock to the system.

I have gone back onto treatments now and they’ve taken about a month to kick in. It has been a bit of a strain, but I think I’ve gotten on top of it and things have started to look rosy again.

I’ve had to make a few changes. I’ve stopped going to the gym so that I could reserve my energy for work and my social life. Being sick also made me realise that you’re very dependent on other people. It has all been a mental struggle as well as being physically sick. I’ve got a really good doctor. Being able to talk to him has helped. He tells me: ‘You just take one day at a time’.

Stephen

I’ve got Hep C as well as HIV. I had to go on Interferon in 2000 [a treatment for hepatitis], because my liver was going. The side effects were loss of muscle, loss of appetite, vomiting, diarrhoea, loss of hair, and I had to put up with it for a year. I think one of the things I did wrong was that I didn’t ask for enough support from the Hep C Council. I virtually became a lone dog and just pushed my way through it. It took me a couple of years to put back on the weight, but I’ve put it on now and I’m twice as active. I only really have a problem in the morning about waking up.

Leo

Coming to terms with Lipodystrophy has been a long drawn out process. I remember the first day that I realised that I had lost so much fat, I completely broke down. A friend came to see me and one of the things he said helped me a lot: ‘It is not what you look like; it is who you are that matters’. I hung onto that for a long time.

In the early days, the doctors would not seem to recognise the fact that it had a psychological impact on you. They would be more interested in the fact that the treatments had helped you. Now there is more recognition of what drugs may cause it so you can avoid it. However, I haven’t dared to change my combination because it works so well. It was a miracle that it worked in the first place because I had already got resistance to a number of drugs before combination therapy arrived.

I went to see a psychiatrist for a while and over time I have become more accepting of it. Now I have decided to opt for New Fill [a form of plastic surgery], which can partially correct the fat loss in your face. I have been thinking about it for a while, but I did not want to give into vanity. I was so stubborn about it. Then I saw someone recently who had had the treatment and he looked fantastic, so I am going to do that.

I feel much more comfortable in myself now. The decisions I have made have been really good for me and so it has made me feel better. I am not that uncomfortable about the way I look, but I think I might as well go the whole hog.

Angus

My combination has been working very well. My T-cells are fine. The only minor ongoing physical condition I have is diarrhoea. I should take a teaspoon of Psyllium husk twice a day in a glass of water for that. I probably do it about twice a month. That’s more from laziness than anything else, but it is also yet another reminder that I have diarrhoea.

I drink coffee first thing in the morning and that exacerbates the condition, but I refuse to give it up. If I go out to dinner and eat rich food and drink, I get diarrhoea; but usually by the next morning my body has set itself right again.

Occasionally it will continue for a day or two, but I am not going to give up experiences like that. I just treat it as an occupational hazard. I am not going to change it because pleasure, in a moderate way, is a very important life philosophy for me.

Evan

The first two or three years I was on treatment, my adherence was shit. Part of that was related to depressive illness. At some point or other, I decided that I would become a hundred per cent complier, because I noticed that it made me feel better. What I found really useful was going to a doctor who made me write down my weekly pattern and keep a diary of the times I missed doses and what factors caused me to miss them. Then she made me develop two reminder points around taking the pills in the morning and taking the pills in the night. My problem now is not forgetting to take them, but taking two doses of them.

Diarrhoea has been my most long term and serious side effect. I don’t know whether it’s a side effect, but the other thing that I experienced is depression and I believe it was probably because of the protease inhibitors that I was on. I took antidepressants for a while, but then I decided that I would just go through the depression. I got some help with that, and it got better over time, but I would say depressive illness was harder than HIV disease and as life threatening. I have to be careful about drugs which have an ongoing psychological impact.

Illness was a change agent for me. When I got shingles, which was my first serious illness, my motivation to be compliant went from not very much to enormous. I wrote down a set of long, short and medium term goals. What often happens is that people get given this sort of recipe of things that they need to do, but it’s completely unachievable. Life is all about a balance between pleasure and risk and health and all of those things.

I’m not going to become obsessed about it, but I wanted to make changes to my health. I decided that I would give up smoking and I wouldn’t give a fuck about what I ate for six months. That meant that I would have diarrhoea and would put on weight, and I did. Then I decided my next task was to get a diet that was organised and reasonable and affordable. Before I gave up smoking I gave up alcohol and they were two huge things to do.

Now I have a diet that’s really healthy and I don’t get diarrhoea any more. About once a fortnight I’ll pig out on chicken and chips and I’ll spend the afternoon paying for it.

My next task is to try and find a way to exercise that doesn’t involve my feet, because I have peripheral neuropathy which causes a lot of pain in my feet. I went and saw a podiatrist about that and I’ve also organised with my doctor to see someone about forms of exercise that might be useful.

Our Doctors

Harry

Remember that these people are trained, and they have all this information, so you are not dealing with a fool. But you are not a fool either. I work in what I call a partnership with my practitioners. I talk to them about my treatments. I don’t simply take a pill because I have been told to take it, I want to know what the pill does. I explain to them that I want to be an active participant in managing my HIV. I have never found a GP who was not prepared to work with me.

I encourage people to take control. You’re the one who has got to take this medication. It is difficult in the beginning to get your head around some of the stuff, and doctors talking a lot of garbage, but I have found that if you ask them to explain, they will. By taking ownership over your health you find other parts of your life will fall into place. When you have control over that part of your life, it does not dominate your life, it just becomes part of it.

Angus

Generally my relationships with my doctors have been quite good. I feel that I am a sensible man who considers what they have to suggest and basically feels what they say is important. I take their advice on board and do what they recommend, so I have always had quite good interactions with doctors. If the doctor tends to be a little authoritarian or does not have a good bedside manner, I tend to avoid them.

I do find it annoying if I go to a doctor with a condition and they presume it is automatically related to HIV. It seems a great many doctors find it very difficult to get out of that structure of thinking.

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Working with your GP

A good relationship with your GP can maximise your health and your ability to maintain your independence. Before you choose a GP, it’s a good idea to think about what you want from this relationship. It’s okay to shop around until you find what you want.

Don’t be afraid to ‘interview’ your GP and find out how they work and what they think about caring for people with HIV. It might be worth writing down your questions beforehand, then jotting down the answers so you can reflect on them later.

It’s important to establish how the doctor charges for visits. Some GPS routinely bulk bill patients who need to see them frequently, or are on low incomes. Others may do this if requested on the basis of special circumstances; others will not bulk bill under any circumstances.

What you should expect of your GP

• Up to date knowledge of HIV treatment options;
• Systems for protection of patient privacy;
• Relationship with HIV specialists / HIV treatment hospital;
• Participation in on-going HIV education / training;
• Non-judgemental attitude;
• Arrangements for consistent care – locum, after hours; and
• Recognition of social and emotional issues and their impact on health.

More information. (PDF 85 KB)

Looking for a doctor who can prescribe HIV drugs?

The Australasian Society for HIV Medicine (ASHM) has an online directory of HIV practitioners and services. You can use it to search for doctors or sexual health centres in your state or territory: http://www.ashm.org.au/hivdir/index.php.

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Your stories

Bruce

Since the advent of triple combinations for combating HIV i have been reduced to simply a number on a file on a shelf somewhere. As in healthy now my Dr would not know who i was if he fell over me in the streets its all very inpersonal now. A pill for this and another for that and over time they did not know how many pills i was taking and it was just like back in the early days when we were taking copious anounts of liver~ kidney and god knows what else organ damaging drugs. i eventually had to take control cause in 2007 i would think taking 10 or so pills a day is slightly overkill. with a blood test every month when my results have not changed in the last few years it would seem i am being slightly overserviced but ~better to be safe than sorry~. After being with the same doctor for 15 years or so one would hope they would at least have your best interest in mind not the new addition to his art collection.Triple combinations make you feel unwell but death is the alternative. If i hear this quote again i think ill throw up considering the billions we spend on defence.

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