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?

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 and 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, many in your situation often 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) 2017 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 January 2017 from a question posted in January 2012. The answer was updated to reflect changes in treatment guidelines.

519 comments

  1. Simon Collins

    Hi Ken, I am sorry that you have had such difficult times and that you feel so low at the moment. In addition to all these things this has been an especially difficult year. Many of the basic things we rely on for support – interacting with family, friends, neighbours and even out health centres – have been dramatically reduced. This increased isolation has increased stress and anxiety in nearly everyone.

    I am not a counsellor but the issues you raise about wanting to give up are especially difficult now that we know that vaccines against COVID-19 will let us get back some of the normal things in life that we probably took for granted. I accept and appreciate what you are saying and that times feels especially difficult now. But I also hear the strength you have had to overcome so many things and that in fighting back for so you you have been pretty inspiring.

    Also, and I speak from experience of having many late-stage HIV complications (I started treatment in 1996 with a CD4 count of 2 CD4 cells), the complications from untreated HIV are neither pleasant or fast.

    Please at least contact your HIV clinic so they know how you feel. The doctors and nurses there with be worrying about you. Have you talked about this with other friends and family who would also be upset to hear this?

    Anonymous helplines such as the Samaritans also give you a chance to talk anonymously about how you feel right now, at the moment when things are bleak. There is no pressure to do or not do anything, but sometimes people who have the skills and patience just to listen, are able to connect you to the parts of yourself that might see things differently.

  2. Ken

    Hey, I’m a 59 year old gay man who was diagnosed in 1995 with hiv but probally was infected years earlier!! But I also have HPV, HBP, PTSD, depression, addictions, anxiety, insomnia, childhood trauma and more I’ve been through hell and back – and back again. From denial, guilt, shame, loss, side effects, diarrhoea, nausea, wasting, heartburn to acceptance and more! I cannot fight this anymore so I’ve stopped all my meds and just want this to be over! I want to die!! I just hope it takes me soon!

  3. Lisa Thorley

    Hi Abby,

    If you want to control your HIV you need to take ARVs. If you’ve been off meds for 8 months your viral load will have rebounded. In the future this could mean that there are less treatment options available to you.

  4. Abby

    Hi am 47 years and was taking Arvs almost one year and stopped for 8 months now my cd4 counts its higher.
    Should I continue?

  5. Roy Trevelion

    Hi Kumekla,

    First, many congratulations on the news that you’re going to have a baby.

    And it’s great that you’ve been on HIV meds for 1-2 months now. That’s because taking HIV meds (called ART) can look after your baby’s health as well as your own health.

    Treating your HIV will reduce the risk of your baby becoming HIV positive to almost zero. So it sounds like you’re doing all you can.

    However, I’m sorry to hear that you are living alone and feeling tired and sick. Can you ask the doctor or clinic if they can help support you? You can also talk to the doctor or nurse about your symptoms and find out if there is treatment for them.

    Please let us know what HIV meds you’re taking. And if you have access to your viral load and CD4 count results, please tell us what they are.

    Here’s the guide to HIV pregnancy and women’s health for lots of info about having a baby.

  6. Kumekla

    Please I’m pregnant and I have been taking medication about 1-2 months now but I feel very weak,tired and sick anytime I wake up from taking the meds. I’m living alone and I want to save my unborn child from HIV infection. Please is that the only way I can save my baby? I’m really suffering.

  7. Lisa Thorley

    Hi Pete,

    It’s not really for us to say if you should stop taking your meds or not, only you can decide this. If you were to stop taking meds as you know your viral load will rise and in time your CD4 count will drop. Once it gets low you’ll be more susceptible to opportunistic infections and your health will be at risk.

  8. pete

    I am 64 now been taking hiv meds since i was positive 1993 I have had my upside downs but I have been undetectable 10 years my T cells are 200-300 I don’t feel I need to take anymore HIV pills I’m 64 I think I’m okay now just live a healthy life what do you think

  9. Roy Trevelion

    Hi Stephen,

    I’m sorry to hear about this situation, and that it’s causing depression.

    But what country do you live in? There might be local support organisations that can help you access cheaper HIV meds. These meds sound very expensive. Is that figure of 4K correct?

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