Question
How long will I live if I stop taking my medication?
15 April 2023. Related: Adherence, All topics, Life expectancy, Opportunistic infections, Stopping treatment.
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.
Hello Ogee and thanks for getting in touch.
I am very sorry to hear about your father, may sincere condolences.
As for the rest of your message: I agree with you.
You should restart your medication and I am sure that the doctors and nurses in your unit will be very happy to hear that too.
Please think about looking in the internet to see if you can find contact information and give them a call.
If that doesn’t work you can always go back and try to find where they have relocated.
If you don’t want to do any of that just walk in to another unit in any hospital that provides HIV care and register with them.
I hope you can manage and feel free to keep in touch.
We would be grateful to hear how you are doing.
Pls what would I do , if I don’t want to go back to my hospital
I have been on drug since my dad died,2019 and things has been pretty normal until last year
I went to the hospital on my appointment day, to find out that my unit pead. had moved
I went to their new site but couldn’t find them even after asking around, so I went home with the hope of coming back but I didn’t manage.
Now my remaining drugs have finished and I can’t go back to that hospital
Recently I have been thinking about how sweet life might be if I took my drugs
What should I do ??
Should I start the process again or ….
If I can see where I can buy it, I would like to know what it costs
I need advice plz
Hi Simon, thanks for your comment which I edited for length and for confidentiality. I am sorry that your experience has not been positive but there are not enough details about your individual HIV or other medical history to be able to comment on these choices and outcomes.
One important issue, for example, is whether or not your symptoms were related to treatment or to another complications. Also, without ART, you might have been affected by much more serious HIV-related problems that the HIV meds protected you against. This is why the vast majority of research studies show that HIV meds have overwhelming benefits in terms of better life and quality of life compared to not being on ART.
This covers nearly all HIV meds over the last 25 years on all sorts of combinations. Some of the earliest meds though from the 1990s did include drugs where the side effects were serious and sometimes permanent.
The move from HIV care that covered all our needs to a new model there many long-term complications are managed by the GP have also been difficult. But this also reflects that many age-related complications are much better managed by GPs who specialist in these complicatons. Aklthough many GPs used to think everything that happened to us was due to HIV, this should now be getting easier, where the GP and HIV doctors both work better together.
I hope that you are still being closely monitored for your HIV care This is important, because stopping HIV meds might feel okay for a while, but HIV will be progressing again without you realising it.
As your CD4 count steadily drops when on on treatment, your risk of other serious complications is likely to become much higher. Please talk about restarting meds again if this happens. The options for modern treatment will be much better now compared with some of the earlier HIV drugs that might have caused problems.
Although you have been feeling better, you might just have been very lucky. A small percentage of people can have a strong immune response afgter stopping ART, but continuing to monitor is essential.
These cautions are important for anyone else reading these posts, because most people have to restart HIV meds if they stop taking them.