Q and A

Question

How long will I live if I stop taking my medication?

Hi,

I decided that at the beginning of December that I would stop taking my meds for good. I’m in my late 20s and had HIV now for about 2 and a half years. I started meds not long after I found out I was infected.

I went from being negative, to positive and on meds in the space of a year. In Nov my CD4 was just under 500 and my viral load was undetectable for the 1st time. At times I stopped my meds, had to change them and wasnt great at taking them.

Unrelated to HIV my health wasn’t great last year was in a bad accident and wreaked my body. I’ve never been at ease with being on meds hence why I wasn’t great with them in the past but I’ve thought long about this and wont change my mind.

I dont want to live to be old because I wont have a good quality of life so id rather let hiv take me when im young. How long, I know you cant just say oh 1 year 2 years etc to me, but in general terms can I expect to live for?

And what kind of illnesses would I expect to get from the HIV?

I’ve had Hodgkin lymphoma in the past would that be likely to return?

Many thanks.

Answer

I am sorry to hear about the difficulties you are going through. I can appreciate it must be extremely hard for you to deal with so much at such a young age. Do you have anybody close to you who is supporting you through all this? Do any of your friends or family know about your HIV status, and have you spoken to anyone about the feelings you are grappling with?

To answer your direct question first, how long someone lives without ART will vary a lot. It might be as little as a few years or it might be much longer. If your CD4 count ever went very low, then HIV is likely to progress more quickly. If your CD4 count has always been high, then it would take longer. Maybe 5 to 8 years on average.

Letting HIV progress without ART would not be an easy or reliable way to end your life. Most to the complications of late stage HIV are very difficult and unpredictable. You can easily research this by looking at the early days before there was ART.

It sounds like you have had a lot of difficult things to deal with and HIV is only one of these. Without commenting on what you decide, the way you are writing sounds very close to someone with depression, which is an illness in itself and this is something that needs its own discussion with your doctor.

Without realising it, depression can take hold after a serious life threatening illness or traumatic event. It is common then to focus on something that seems certain and even better, like an earlier death, when time with a counsellor or advisor might help you see that other options are available, but which you just can’t see by yourself. Again, this is not a comment on the things you say, just something to think about.

Many people find it hard coping with an HIV diagnosis, let alone being diagnosed at such an early age and having to start treatment so soon after. Some people come to terms with it soon after, however, many more people take a long time. You are therefore not alone in feeling this way.

Although you were diagnosed just over 2 and a half years ago, it is still early days. It may take you some time to learn to cope with living with HIV and all that entails. With the right treatment, care and support, most people find that they begin to move on with their lives.

You mention that you don’t want to live to be old because you may not have a good quality of life. The reality is, you can live to be old and have a good quality of life, even with an HIV diagnosis.

The medication we now have available to treat HIV is very effective in enabling people to lead healthy and fulfilling lives. Some of the people I know who were diagnosed in their 20s and 30s are now becoming parents and grandparents.

You asked about how long you can expect to live. Modern HIV treatment (ART) now means that life expectancy for an HIV positive person is the same as an HIV negative person. This means you potentially have a lot of time work through the things that re difficult and to have time to enjoy life.

You mention that you were not adhering very well to your medication. Are there any particular issues that you were concerned with? Was it side effects, or was it just having to take pills? Did you speak to anyone at the hospital about finding it hard to adhere?

A good health advisor could talk about newer HIV meds that might be much easier to take.

Without knowing the details of your other complications, if you have responded well to treatment for Hodgkins lymphoma, you have already been very lucky. The chance of long term remission are similar as if you were HIV negative people. This is about 70% survival at five years, which in oncology is seen as similar to a cure rate.

Your other question was about whether the Hodgkins lymphoma is likely to return. As your CD4 count drops, as it will do when off treatment, this is likely to increase the risk that the Hodgkins could return.

Stopping treatment will mean your CD4 count and viral load are likely to quickly return to levels before you started treatment. If this has always been high, then if the break will help you for psychological reasons, the risks are relatively low. However, if your CD4 cont ever dropped below 350, and definitely if it went much lower, stopping treatment is much more risky.  The risk for Hodgkins to relapse is likely to be higher when you are not on HIV meds, compared to being  on treatment.

You said your CD4 count is about 500 and an undetectable viral load. These are a good indication that the medication was working really well. And that you are healthy.

The BHIVA (British HIV Association) guidelines recommend everyone should starting treatment even at high CD4 counts.

As you are based in the UK, you may find it useful, in the first instance, to chat with one of us over the phone. The i-Base treatment phoneline is 0808 800 6013. It is free from landlines and most UK mobile networks.

Other organisations you might find useful to contact are:

  • Positively UK – They support people living with HIV . They also have a mentoring service which you may find useful.  A mentor will be assigned to you and you can see them regularly over a period of time until you are ready to move on.
  • Body and Soul – they provide support to families living with HIV and have a service specifically for young HIV positive people like yourself.

Note: This answered was updated in April 2023, December 2021 and January 2017 from a question posted in January 2012. The answer was updated to reflect changes in treatment guidelines.

605 comments

  1. Simon Collins

    Hi Cadtha, HIV status is not a problme for this work in the UK, but for infromation on immigration and visa’s please see:
    http://www.hivtravel.org

  2. cadtha

    am cadtha if am hiv positive can i get visa for us as a care giver

  3. Simon Collins

    Hi Laiza, thank you for sharing your experience. A very small percentage – less than 1 in 100 (<1%) of people are able to control HIV for many years without using HIV meds. Other people generate a stronger immune response after using medicines for a few years and it looks like you might just be lucky to have a similar response.

    You didn't include details of your CD4 count which will also be important to know. For many years people with strong responses were called long-term non progressor's (LTNPs). This was later changed to long-term slow progressor's (LTSPs) because given enough time their CD4 count did start to drop. More recent term's include 'elite controllers' and 'post treatment controllers'.

    Although you are feeling well these results show you are stable rather than improving. This is still good but 17,000 and 7,000 are interpreted as being the same. Viral load and CD4 tests are not sensitive enough for single results to be very accurate. Any result that is within a range of being three times higher or lower is technically interpreted as being similar.

    Many doctors would worry that your viral load is this high for so many years. Although your CD4 count is used to estimate your immune system, the risk of serious complications is also related to your viral load. A detectable viral load means that your body is over-activated and is in a state of inflammation, which increases the risk of heart, liver and kidney problems and some cancers.

    Some people like to be undetectable to reduce the risk of transmission to partners, but this is a separate aspect of ART.

    To answer your question about language, medicines are approved based on careful research. Years of study that prove the effect of the medicines. We already have years of experience that the vast majority of people who don't take medicine steadily progress and become very sick. We also know this happens if most people stop ART.

    Just by chance you have been lucky but for most people it would be a very bad and risky choice.

  4. Laiza

    I started taking ARV’s in November 2017. My viral load was around 36.000. I stopped taking ARV’s in 2019 September and my viral load was around 12;000 a in 2023 my viral load was 17.000 then went down to 7.000. Why is it so that I am regarded as someone who declined medication when all my blood tests shows that I am even improving. I think alternative choices should be regarded as being on medication.

  5. Josh Peasegood

    Hi Daniel, U=U will apply in this case. There is no risk of transmission to yourself. You do not need to be worried about any risk.

    For more information about U=U please see here: https://i-base.info/u-equals-u/

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