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) 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.

537 comments

  1. Simon Collins

    Hi Alan – thanks for sharing your support. I am sorry that I can’t publish your email to connect but Elizabeth can reply here and I hope she reads your post.

  2. Alan

    Hi Elizabeth

    Life has its moments of joy and pain, but it’s the strength of who we are in the most difficult of times that shapes our character. Don’t give up. You are not a burden and you have everything to live for, don’t give up. Nobody is guaranteed to live forever, but the time we have here on this earth is everything because there will not be another.

    You are not in a good place right now but all these comments coming through to you, is just a sign that even though we don’t know you, we still care, because you are not alone in your pain, we all go through stuff. I just buried my brother in Feb 2021, due to Covid, after burying my other bro in 2016 and my sister 2010 and yesterday I heard my other sister suffering some organ failures. Yes I feel like giving up but I cannot because it’s not who I am, and it’s not who you are. You can do this.

    I am in South Africa, far away from you but still facing the same challenges as you, because we are all part of the human race. Keep the chin up, turn your negative into a positive, you can do it.

  3. Simon Collins

    Hi there – I am sorry that you are having such a difficult time. I can’t pretend that HIV treatment solves other problems, but it does give you time to sort out other things in your life.

    In this case your car and concern for other people in your life has stopped you havethe time and space you need for yourself. It sounds like you care for your family, so there is no way that you will make their life better if you are not around.

    If you love your family, the worst thing you could do would be to leave them. Please try to find someone to talk to.

    In the UK, the phoneline for the Samaritans is 116 123. The US National Suicide Prevention Hotline is 1-800-273-8255. Eight helplines for South Africa are linked here.

  4. Anonymous

    Dear John, I am also in a similar place in my life. My family knows, I’m tired of letting family down. It seems know matter how hard I try I can never please them. I do and do and do and it’s never enough. My one sister needed help financially and now every month I cant even pay my bills. I’m robbing from Peter to pay Paul and I can’t keep up. She said she’d help pay and y’all see what I’m trying to do now. It’s obvious she’s not helping and I’m on SSD and I refuse to burn the bridge with her cause I love her. This is the easiest way (for me).
    Thank you for any advise. I’ve been undetectable for over 5 yrs and from what I read it’s going to take longer than expected.

  5. Lisa Thorley

    Hi Elizabeth,

    How are you doing? Are you getting any support?

    When thinking about transmission to babies, what’s important is a mothers viral load, not the CD4 count. When your positive and pregnant it’s important to have an undetectable viral load. When a mother has an undetectable viral load the risk of transmission is drastically reduced. There’s more about that in these guides:

    https://i-base.info/guides/pregnancy and https://i-base.info/guides/starting

    Now that you’re taking ARVs, your viral load will be decreasing. Ideally it should become undetectable within 1-3 months of starting treatment. Due to you being pregnant, it’s important that you have this checked.

    As you may be aware your CD4 count is low, it will rise with the ARVs. However, it’s important that you follow the advice that’s in this link: https://i-base.info/qa/4643

  6. Elizabeth

    Hy m Elizabeth I just found out that I’m hiv positive at the clinic and I’m 13 weeks pregnant and my cd4 cound is lower than 20 I’m on treatment so I’m worried about my unborn baby pls I need advise.

  7. Lisa Thorley

    Hi John,

    I’m sorry but we can’t give you this information as it’s not possible to predict how long it will take for you to die (that is if that’s what you’re asking about). As a rough guess it could be a few years, not a matter of months.

Comment

Your email address will not be published. Required fields are marked *