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.

410 comments

  1. Lisa Thorley

    Hi Anonymous,

    It is possible, however it isn’t common that someone can be positive for this length of time and not have any health issues. What is their CD4 count?

  2. Anonymous

    I had a patient who tested HIV pos in 1992 and ever since then they wre not on treatment because she felt that she was not ready , she has been leaving with the virus and still managed to conduct a healthy life style , so now that she is pregnant she has then decided to take the treatment this year for the sake of the child .. is it possible to stay with the virus for so long and still stay healthy?

  3. Roy Trevelion

    Hi Anonymous,

    Thanks for telling us your story. I think it shows how we must all educate ourselves about HIV and HIV treatment, even if our HIV treatment has to be as special and as individual as yours.

    Best wishes, Roy

  4. _Anonymous_

    Hi everyone,

    My name is _anonymous_
    I just turned 26 years last month, I’ve been living with HIV for just as many years,
    As I was born with it.

    Finding out wasn’t easy, I was told by my adoptive parent when I was around 15 going on 16, I was overwhelmed by emotions, I had so many questions.
    But much later I understood that it wasn’t an easy conversation to be had as I was so young.

    Whilst I was still in primary I had a near death experience and was hospitalised for a little more than 6 weeks for removal of my appendix and hernia infection, there were a few complications, but thank God I survived, although I have an almost 30cm long scar curving from the right of my lower chest to the left of my lower abdominal area as a result of the complications. (this made me hate pills, injections and hospitals in general) I never felt the same after that operation.

    After I was told my status I knew I would have to see doctor’s regularly, which I didnt want, (well I guess no one does).
    I also found out that through the past years of checkups with the family doctor that’s my CD4 count and viral load have stayed the same for months and even years at a time!
    The longest ever recorded was 4 years in a row.

    I thought this was great and I wouldn’t need to take pills.
    Over the years I went on without taking any ARV’s and astonished some doctor’s when I showed them my results, my CD4 count was always high and my viral load kept declining slowly.
    Its not untill I finished school when I really started to EDUCATE myself, on what this virus is and what it can do.

    I understood that it has to be monitored. I did just that but after a while when I got my tests coming back negative (without any treatment) I realised there’s more to my situation as I knew that this wasn’t scientifically posible (according to my research).
    So I went back go the family doctor who I’ve been doing regular check ups ever since I was young. After a few tests he explained that its not that I’m negative but that my viral load is undetectable.

    He asked me when did I start taking treatment? When I said I have not taken any, he was shocked and asked me for more blood samples as I’m sure he thought I was joking or something, but several tests later, showed I wasn’t.
    In disbelief he sent a few of my blood samples to his friends he had studied with from abroad, and they also couldnt believe it, my immune system had somehow developed a resistance to the viras.

    “This was not uncommon” my doctor’s colleague’s said. I already knew HIV has different strains, it can infect and progress in each individual differently, but what they noticed is that they couldn’t classify mine with any of the 2 existing strains.
    Since then my doctor has sent numerous blood and other samples to more institutions to help find out what strain of the viras I have, I’ve had loads of tests done on me, my blood and tissue samples for hopes in understanding not only which strain, but also how my bodies immune systems developed this resistance.

    Even when my samples where infused and tested with otherscontaining very high viral loads from different strains, the results still showed decrease in viral load and higher cd4 count.
    For research purposes last year I was asked to take an experimental ARV treatment to test its reaction to my strain of HIV. So far im not having any problems.

    I believe I’m one of a few of poeple in the world that this has happend to. (I’ve heard of a similar case in Guinea-Bissau, West Africa)
    I’ve lasted 25 years without taking any treatment and suppressed viral load to undetectable levels.

    The only reason I’ve agreed to taking an experimental medication is because if theres any chance (even the slightest) of creating a cure or vaccine of some sort for this viras, Im down! For an HIV free world one day!

    The world can already prevent it from mother to infant infection (which is how I got infected) Soon with my sample I hope more progress will be made in this field.
    I believe we almost there! and poeple who are diagnosed with HIV should try educate themselves about it, thus they can understand how to monitor (regular cd4 count and viral load testing) and manage it (using contraceptives and taking treatment). Protecting yourself and those around you.

    Yes there are places where the proper information and/or treatment isn’t available, but the worst way this viras can kill now is ignorance, which is attached to stigma.
    There’s no reasonm to misuse doses of ARV medication, more so when you know your HIV+ as this can make the ARV’s less effective, leaving you vulnerable to opportunistic infections.
    Even if you feel strong, your healthy, you eat right, and you exercise almost everyday.

    Without knowing exactly where you stand with your CD4 count and viral load it’ll eventually progress into AIDS then its too late.
    (People don’t want to know their status because their scared)
    But its best you know and do something about it.
    Rather then doing nothing which is exactly what the virus wants.

    Think about it…
    Thanks for listening.
    God bless

  5. Lisa Thorley

    Hi Grace,

    Its up to you if you want to take medication or not. However, your HIV is no longer under control. Your viral load will have rebounded and in time your CD4 count will fall. This will have a negative impact on your health and your ability to look after your child.

    If you decide that you’d like to restart medication, please discuss this with your doctor.

  6. Grace

    Hi everyone , I am in South Africa, I’ve been diagnosed with HIV 1 and a half years ago I was expecting and I had a son who is a year old now and he is hiv negative I stopped taking my meds after stopping breastfeeding I stopped taking meds and its been 5 months since I stopped taking my meds and I haven’t been sick since .I accepted and moved on. I don’t have stress at all . am doing the right thing , I eat healthy though .

  7. Donna

    I’ve had HIV for 20 years & am still doing fine. I don’t know why you say your quality of life wouldn’t be good & that’s why you want to die young. People with HIV can live just as long as people that are not effected. I am now a grandmother & besides regular body aches, I’m fine. Been on antivirals this whole time. It’s a disease just like Diabetes.. you will have to manage it everyday, but if you do you will live a normal life.

  8. Lisa Thorley

    Hi Ama.

    This won’t be a side effect of the meds that you’re on. Please talk to a doctor about this.

  9. Ama

    I was diagnosed 7 years ago. I had a series of side effect from the arvs so I kept switching from drug to drug . I’m now on M171 but I cough with a lot of phlegms.

  10. Lisa Thorley

    Hi Maddy,

    If you don’t take meds for a week its very possible that your viral load will rebound. You could also develop resistance to your meds. Is there any reason why you’re going to be missing meds for a week?

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