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.

338 comments

  1. Roy Trevelion

    Hi Brian,
    Thanks for this comment. It’s good to vent and it often helps. It’s great that you go to therapy.
    Good luck and best wishes.

  2. Brian

    HIV. Never thought it would happen to me. Yes I’m on Meds but ready to go off it and really want to be left alone. Sometimes I’m scared to die other times I just want to die to get out of this life. I don’t know who gave this to me .All I no is I did this to myself. There is no one to blame. Yes I go to therapy. But this life is not easy Sometimes I want to breakdown and cry and sometimes I’m in denial about this. I guess I just needed to vent. Thanks

  3. Roy Trevelion

    Hi PJ,
    Many thanks for your comment. But we are all different. And unfortunately many people who were HIV positive in 1986 have not made it to 2018.
    It’s important to take control of course. However, many people choose to take back control by collaborating with their doctor and making treatment decisions together. This can be important if you are very unwell.
    Best wishes.

  4. PJ

    Don’t know where this has gone since the original was 2012 (it’s 2018 now). I am thinking of stopping my meds basically because I have never been comfortable with the idea of them in the first place. They just feel like poison to me. When I sweat or cry I can feel and smell them coming out of me. The big difference between the original poster and I is that I have been pos since 1986 and I am as healthy now as I have ever been! That’s 32 years! A diagnosis is not a death sentence. (although, sometimes I feel the diagnosis is not what it seems to be anyway). At 53 now I am really wanting to take control back that I don’t feel I have on the meds. Never really felt they are what’s kept me going.

  5. Mike

    OMG…You Poor Baby…I Am 38 and You Made Wanna Cry… Don’t You Ever Give Up! I Have Mental Health Issues and Can Relate..But Going Silently in the Night Is NEVER an Option! Its A Struggle..But Hang In There Love…I Promise It Will Get Better!

  6. Roy Trevelion

    Hi Richard,
    Atripla and other HIV meds (ARVs) reduce HIV very quickly. ARVs work against HIV by reducing the amount of virus in your blood to tiny amounts. And after a few months the viral load test should come back as undetectable. This allows your immune system to recover and can protect against other infections. But treatment must be taken every day. Here’s a guide to HIV treatment called ART in Pictures.
    You can read about Atripla, side efects and tips on the best time of the day to take it here. But if your symptoms are too much to bear you can talk to the doctor and ask about taking other meds that might suit you better.

  7. Richard

    How long is Atripla expeçted to work in our bodies. The side effects are too much to bear.

  8. Precious

    Hi ose
    I’m a 28 years old HIV negative and my husband is 26 and HIV positive. We met last year and got married after he told me he was HIV positive. Don’t give up in life, you may find someone who will love you the way you are. We’re happy couple we have sex like a normal couple ( with condoms of course). And planning to have kids as soon as I’m on PREP.

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