For some people there are significant side effects associated with using HIV drugs for long periods. One of the most pressing questions facing people with HIV is the issue of taking a break from your treatments.

There is not a simple answer to the question ‘Can I safely take a break from my HIV treatments?’ Everyone is different. There are however some bottom lines that apply to all people with HIV.

1.The benefit of “structured treatment” breaks has not yet been established in any setting and stopping therapy involves numerous potential risks.

2. Taking a treatment break should always be done in partnership with your medical practitioners. Even if you started a break without telling your medical practitioner, informing a medical practitioner and monitoring your health is very important.

When some people stop treatments their viral load can rise (“rebound”) very rapidly and their CD4 count start decreasing quickly. For this reason it is very important that there be frequent monitoring of your viral load and T-cell counts after stopping treatment because you can’t necessarily tell from how you feel.

3. Everyone is different – there is not one simple answer to the question of ‘Can I safely take a break from my HIV treatments?’. The medical and scientific questions depend on when you started treatment and the underlying state of your immune system. The questions relating to taking a break from treatments faced by a person with HIV who started treatment soon after getting infected with HIV are very different from those faced by someone who has been on antiviral treatment for a number of years and has a relatively low CD4 cell count.

4. So called “Drug holidays” and unplanned treatment interruptions are different from planned or strategic treatment interruptions. There have been a lot of words and phrases used to describe treatments breaks that have become popular in PLWHA communities. ‘Drug holiday’ is one such phrase. It initially referred to taking breaks from treatments for short periods to enjoy special events like Mardi gras. Stopping therapy for a weekend (what is commonly meant by a “drug holiday”) every now and then is not strategic or structured and will almost certainly increase the risk of developing anti-HIV drug resistance.

5. "Compliance” or “adherence” – that is following the recommended dosing schedule for your HIV medications – remains important in getting the most benefit from your HIV medications while you are on them. Numerous studies have shown the importance of following the recommended dosing schedule for your HIV antiviral drugs. When you first start treatments or start a new treatment combination, taking them continuously according to the recommended schedule is necessary to get the most from your anti-HIV drugs.

Guidelines for taking a break

Positive people talk about taking a break

Taking a break – some suggested guidelines

1. Know how to stop
Viral load rebounds after stopping treatment. It is important that all drugs are stopped at once – i.e. if you’re on a triple combination don’t stop one drug one week and another drug a week later. However, different medications have different lengths of time that they are active in the body (their “half-life”). Drugs with a longer half-life will stay in the body when the other drugs have been cleared. Thus viral load may have started increasing while there is still one drug in your body – increasing the chances of developing resistance to that drug. This means that if you are on something such a nevirapine that has a longer half-life it’s important to stop that earlier.

2. Monitor carefully
Maintaining a close watch on CD4 cell counts and viral load is the crucial thing to decide to do if you decide to take a break from your treatments. The rebound in viral load can occur quite soon after stopping. In some people this settles down to a reasonable baseline level and in others it stays too high – which is why it’s important to monitor. It’s probably not a good idea to respond to the viral load results taken very soon after stopping.

3. Plan your next treatment strategy
The word ‘break’ implies something with a beginning and an end. Unfortunately some people go on breaks, don’t monitor and then only start treatments again when they get sick and their immune systems have been damaged quite a lot. So when starting a break it’s a good idea to have your next combination already decided. If your not taking a break that is part of a clinical trial then decide in advance with your doctor at what viral load levels and/or CD4 cell levels you will restart therapy.

4. Share the experience
This doesn’t mean write the novel about it - though that might be fun. However, there are clinical trials that you can participate in that are evaluating different treatments breaks strategy. These may not be for everyone but it is certainly the case that we need more information from these sorts of studies to better inform our decisions.

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Positive people talk about their treatment breaks

To find out some of the answers to the questions raised by the stories below, talk to your doctor or your local treatments officer, or download HIV Treatment Breaks? (PDF, 78KB 15 pages).

Mark

5 years, 18,250 pills later….

Mark had his first positive HIV antibody test result in 1992. He had regularly tested for HIV and other STDs and doesn’t remember any seroconversion illness.

In 1992 the time the treatments picture was confusing – combination trials of 2 drugs were common, but the first drug, AZT, was mired in controversy. After talking to a number of people Mark decided that treatments was a future issue for him…and he would just regularly monitor his health.

“I guess after then I had a four year party. My attitude was the clock was ticking and I was going to have fun.”

Then in 1996 Mark read banner headlines across the front page of the local gay newspaper announcing the arrival of seemingly effective antiviral treatments for HIV.

“It changed my life. I had to rethink my future and that was actually really scary. A year later, instead of dance parties, I was career oriented – and instead of recreational drugs…it was 10 pills a day of antiviral drugs.”

Mark has started to hear more and more about long-term side effects so he decided to begin having discussions with his medical practitioner about stopping his drugs for a while.

Judy

Time will tell ...
I am curious to see how things pan out for me.

I contracted HIV in 1995 from a man I was in a relationship with. After being told that there would be an asymptomatic phase, I waited and waited …..and waited.

Seven years later it has become clear that I fit into that group of approximately 5% of people living with HIV/AIDS who don’t really recover from the initial infection onslaught. Within the first 18 months of living with HIV, my T-cells had steadily dropped to 100, and it was then that I started treatment. Since then my T-cells have stayed between 100 and 200.

Although to this point I haven’t experienced a major HIV-related illness, my general well-beinghas been at quite a low ebb, with ongoing fatigue, digestive problems and periods of weight loss.

On the whole I have been a reliably “good patient”, rarely missing any medication doses. At present I am working again part-time and am happy with where I am in life. My weight has gone up, although it has appeared in a few of the wrong places! Subtle effects of lipodystrophy have certainly become apparent over the past couple of years and have perhaps contributed to the decision to take a treatments break.

It has been a decision that took almost one year to make and I supose that simply put, it just felt like the right time. I needed to change medication anyway, and my doctor has continued to be supportive of any decisions I make regarding my own health. I psychologically needed a break - and having to change medication was a good opportunity.

I have to admit that it’s a bit scary given that I don’t have too many T-cells to play with, but I really feel for so many reasons that I needed to do this. Although the agreement was to take a six week break, I think at this point I will be leaving it as long - while carefully keeping an eye on my health.

After 6 years of swallowing pills morning and night, I am currently on my 7th day combination-therapy-free. I am very curious, nervous and excited to see how things pan out for me…time will tell!!!

Ron

I think I did an oops…

Ron became HIV-positive “in the dark ages”. At the beginning of the 1990s I was down to 200 CD4 cells. After postponing starting HIV treatments “I couldn’t any more” says Ron.

“I did all right. But the early 1990s were a horrible time. It seemed like a funeral every week.”

Ron managed to keep his CD4 cells around 250. Then the earliest interleukin trials (a still experimental HIV treatment) were announced. “I was just lucky enough to qualify.”

“The trial was a real grind…but whether it was interleukin or the new protease drugs or both…my CD4 cells count went to levels I’d never had since they were first tested. Over 700.”

After 4 years on interleukin Ron had what he describes as “treatments burnout”.

“Something basically snapped. People weren’t dying all the time any more. AIDS was no longer the big story – and I think the previous ten years hit me.”

Ron threw all his treatments in the bin, put his furniture in storage, and drove north and ended up staying in Northern Queensland for 8 months.

“For most of the time I felt physically better than I had for years. But I did notice I was losing weight. I had been thinking more and more about going home to Melbourne – but I kept putting it off. Then I got a cough…and ended up in hospital with a nasty lung infection that wasn’t considered to be AIDS related. However, as a result I had by counts down – and the picture was not good.”

Ron’s CD4 count had dropped to 50.

“When I got out of hospital I went back home…and since then it’s been a real struggle maintaining my health. I think looking back I did a big oops….”

Cameron

“I can dance if I want to”
…the case of sloppy treatments interruptions

After 4 years of being on pills for HIV infection and missing about 3 doses, Cameron puts it like this ‘I was at a point in my life where I felt like I had to get out and about more. So I decided to go clubbing every second or third weekend. I had been such a ‘good’ person with HIV for so long, as far as I was concerned it was time to reward myself. I had read about the interactions of some of my anti-HIV drugs with recreational drugs. I’d also heard about people doing ok after breaks from their treatments – and some of my friends seemed to have done this without much harm – although one friend after six months off his pills got suddenly sick – but I was only having a break on occasional weekends.’

A while later Cameron’s doctor asked him if he was aware of the potential interactions between one of the drugs he was on and recreational drugs. Cameron had a quick answer “Yeah, but I’m having a break from my pills every second or third weekend for a few days. And I’ve read about this new interest in treatments breaks so I decided it was ok.”

‘My doctor then explained to me the difference between unplanned breaks, the sort of ‘do it yourself’ breaks I was having, and what Structured Treatment Interruptions or Strategic Interrupted Treatment are and how it was different from what I was doing which he called ‘sloppy treatment interruptions’. Well being called ‘sloppy’ doesn’t thrill me – it’s the same as being called “slack”…so I guess I sat up and took notice.”

“I had my viral load done and it had gone from 20 to 400…not a huge increase but…. – and as it’s now winter I’ve taken a break from clubbing. But next summer I’ve pre-warned my doctor that I want a break and we are going to talk later about the best way to do this.”

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