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.
Although not directly related to the individual post about, perhaps some of the following videos will help other people who are having a rough time. They are just a few from hundreds of other links I could have sent.
Pesonal stories from the US – espeically young people
https://www.youtube.com/watch?v=AV1J_rCh27A
South Park – humour can sometimes help…
https://www.youtube.com/watch?v=KBylQxZMEjE
I am HIV positive – touch me
https://www.youtube.com/watch?v=Ai4b7j5a_7M
Positvely UK – a UK project – has other support information online:
http://positivelyuk.org
Hi
First it is great that you have got in touch and said how you feel. Although you feel alone, you are not on your own. There is a huge community of HIV positive people – currently more than 30 million people globally. A large percentage of us at some time will have had similar feelings.
It sounds like you are taking the diagnosis badly, even though you have just been unlucky. Most HIV negative people will have have very similar risk to you from leading life with all it’s complexity. Although it doesn’t seem like it now, you have the chance to turn this around to be something that is good – especially as you describe yourself as previoulsy being so determined.
I have a couple of question though – please could you either post bakc online or send me a personal email (simon.collins@i-base.org.uk).
The first is whther you had a CD4 and viral load test back in November? If yes, it would be good to know the approximate results.
The second is whether you are currently on treatment. You mention side effect and so I am thinking perhaps yes. I ask this because on of the most widely used HIV meds – called efavirenz – can seriously affect you mood if you are sensitive to this side effect. Changing treatment if you are using efavirenz could completely change how you feel within a week. This is very important.
I think your message also covers three different areas.
One is about thinking your life cannot be everythng that you previously planned. This isn’t factually true. HIV treatment – called ART – means your life expectancy is similar, that you can become non-infectious to partners, that you can have children without passing on HIV etc. Very few occupations have an HIV bar. There is still ignorance and stigma – but that is changing too – and you can be part of this force for change.
The second issue it that you are being very hard on yourself. HIV is just a virus – and now one that is very easily treatable. But your emaotional situation – being very upset and isolated – is something that you can change but getting in touch with other HIV positive people and support groups. Or by asking for extra support and perhaps counselling at your clinic or local HIV organisation.
Thirdly, the way you caught HIV brings special difficultires to overcome. Having caught HIV – from someone you were in love with – takes time to understand and come to terms with. This is especially true if he died and is not around to help you.
Taken together this this will take time – and six months is still very early.
You are still a good person and will do great things. HIV doesn’t stop any of this.
Everybody has their own path through this. If you would like me to try to find local organisations – please post bask online – or ask me anything you like – here on by email (simon.collins@i-Base.org.uk)
Hi
I was diagnosed last November 2015
I am in my early 30s and resigned from my job because of the side effects (grogginess, depression, etc). I will take my first VL and CD4 test this month
I feel very lonely and lost. My dreams were shattered and I couldn’t just talk to anyone anymore. I’m on the verge of giving up but I’m still hanging on. I believe in God but I don’t believe in myself anymore.
I was an achiever. I excel in almost everything that I do. I couldn’t blame that person who infected me since I did it out of love. He passed away already without even telling me about his status. I feel very stupid, hopeless, and I just couldn’t bear the mental and psychological torture that this situation gave me.
I’m crying every night as if I’m unwanted. I couldn’t set myself free. I coulnd’t forgive myself. It’s extremely hard.
I wanted to do great things but..
I’m a good person but..
:-(
Stopping treatment is not a good idea, it means that HIV will bounce back and your CD4 count will drop. And having a low CD4 count means you are at risk of getting other infections.
But what meds are you taking? It sounds like you might be getting side effects from efavirenz which is one of the drugs in Atripla. Generic versions of Atripla include Atenef, Atroiza, Citenvir, Odimune, Tribuss, Trivenz, Truno, Trustiva and Viraday.
These side effects can include sleep disturbance and vivid dreams. This can make you feel drozee the next day. About a quarter of people taking efavirenz reported this side effect. And that meant they had difficulty carrying out daily work.
It’s important to talk to your doctor about this. You can ask if there are other meds you can take which will help you to do your work.
Just need info on my status if I stop taking my meds what’s gonna happen because it makes me very drozee and I’m working 24/7 everyday. I can’t take it because the next day I stil feel I’m under the drug.
Hi,
It’s good that you’ve started HIV treatment. But it sounds like you might be getting side effects from Atripla. These side effects can include sleep disturbance and vivid dreams. So this could be a reason why the last 4 months have been bad for you.
Stopping treatment is not a good idea, it means that HIV will bounce back and your CD4 count will drop. The only way to increase your CD4 count is to take HIV meds.
But you can talk to your doctor about changing your treatment to other meds that can have fewer side effects than Atripla.
You can find out more about Atripla and side effects here:
http://i-base.info/guides/1561
I am 21 and I was diagnosed with HIV on January 6th 2016, CD4 was 365 in Febuary, in March it was 284 and I was advised to start treatment then. I haven’t missed a dose but I would love to stop treatment completely. I am on Atripla, one tablet before bed. It has been the worst 4 months of my life and am wondering if I could be okay if I stopped completely, if I just took immune boosting supplements, proper diet, little to no alcohol, enough sleep and exercise. If I maintained a CD4 of above 700, can I stop treatment before I become depedent on the med. Please email me your comments I’d really appreciate. Thank you
Hi Thandeka, What meds are you taking? If you’re on Tribuss (or another trade name for Atripla) then a reported side effect is sleeping badly.
Atripla side effects are mainly related to sleep disturbance which includes nightmares, and mood changes that include anxiety and depression.
It’s important to ask your doctor to change your meds if this is the cause. Other HIV drugs can be less likely to cause bad sleep. Your doctor can tell you what drugs you will be able to change to.
It’s important that you find a drug that improves your quality of life.
You can find out more information and other generic names for Atripla here.
I really need your help and support. I’m starting a second month now but still these sides effects are giving me problems. It’s when I’m sleeping, I go mad when I wake up. I told my sister and my friend about this.
Hi
I am sorry to hear you are having a difficult time. Please can you let me know the name of the other drug you are now taking with Truvada? – I do not know which drug “srtespeen” is – even trying to guess.
My main comment – and I am not a doctor – is that all the problmes you are having need to be taken seriously byt your doctor and diagnosed. I think there is a good chance that these are not related to side effects of HIV meds, but are symptoms of other causes.
For example, the nosies in your head might be tinnitus. This is a difficult condition, but is common in the general population, especially in older people, and it is very difficult to treat. I have not heard of tinnitus being a side effect of HIV meds – but you could test this by changing to a different treatment and seeing whether symptoms change at all.
Changing medication for side effects is easy and doesn’t have a bad effect on your long-term health. If anything it should help improve your life.
The second piece of information that would help me is that you say your CD4 and D8 count are 888. I wondered if you could please check whether you meant to include different numbers for each of the CD4 and CD8 counts. These are unlikely to be the same number, and I’d need to know you CD4 count to talk in more details about the options of stopping treatment.
If your CD4 count is currently high (above 500) and has never been very low (belwo 200) then it is easier for your doctor to talk about the option of stopping treatment to see whether this has any affect on your symptoms. This is not generally recommend though because when you stop treamtent your viral load is liekly to rebound within a week or two and your CD4 count can then drop.
The rebound in viral load might even make your current symptoms worse, if they are related to another infection.
As a last resort, stopping treatment for a short time with your doctors suppervision – perhaps for four weeks – might be long eneough to see whether there is a direct effect of the drugs. If you find there is no difference, this might change how you feel about wanting to take a longer time of treatment.
Please get back with the extra infomration – or email me details if you prefer (questions@i-base.org.uk).