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.
Hi David,
I hope you don’t mind but I’ve edited your comment down a bit because it was long. But thank you for telling us your personal story. I’m sorry, it sounds very tough. I don’t think you’re being patronising. All best wishes, Roy
Hi all. I was diagnosed in 2013. I had caught Chicken Pox fro the first time in my life at the age of 50. Within 4 days of contracting Chicken pox I was hospitalised and through a blood test diagnosed HIV+. My CD4 was 40. Secondary infections were pneumonitis, Encephalitis and a lung fungal infection. Within 2 days of being hospitalised i was in ITU with a 30% of surviving. Believe me I would not even imagine what mess i looked like. Lungs collapsed and was in ITU for 7 days. My point here being unless you have experienced final stages of HIV = A symptomatic your body is severely damaged and immune system is terminally compromised. It may rise, then drop then rise throughout ones life but it is the lasting affect the HIV left on the body which dictates what quality of life you have afterwards. HIV doesn’t discriminate and affects anyone at anytime. It is an individual illness and everyone has their own individual experiences. I am still here as a result of modern medicine and my body’s fighting spirit. I have also been given a much shortened life expectancy diagnosis as a result of the damage done. If anyone is diagnosed HIV+ and not yet ill then you are the lucky ones as the medication you will take will stop and suppress the virus in its tracks and you can live a long and healthy life.
It is very easy for people to read sob stories and think that the author is suffering depression. For one, HIV causes depression anyway so it is a common symptom and obvious that depression is prevalent.
I am a normal Joe Bloggs but as a result of also suffering a mild TIA stroke which was a very rare combination of HIV+VZV I have a vast knowledge of HIV. Thank you for reading this post and remember where there is life there is hope and that isn’t me being patronising.
Hi Manny,
Thanks for being so open about your situation. You’re right, it is your life and no one can tell you how to live it. You may however want to reach out to a professional for help. Also dying for AIDS isn’t a joke, it can be slow and very painful.
I stopped my meds 2 yrs ago. I don’t plan on ever taking them again. I’ve always wanted to die even before my prognosis. I have tried several times in the past. Just made things worse bc the people around me are like I will be so sad if you die. So I’ll continue suffering so you wont be sad….. Everyone knows I’m positive it will be easier for them to digest instead of me going dramatically. I don’t give a shit. I made my choice. You make yours. This isnt about HIV or depression, or talking to my doctor, or any of that stupid bullshit people want to feed you to pacify their egos. This about doing what I want, bc it’s my life. I’m the one suffering. Ohhh you dont have to suffer alone, the hell I do. Ain’t no one going to hold nobodys hand 24hrs a day. Dont nobody want to hear that sad sappy shit all the time. And in the end no one cares you will die the will cry and you will be forgotten. I live in solitude as an introvert, hermit. Other than work, I have no interaction with people. I have two friends from my childhood that I still speak to once in a while, I keep my family at a distance as no one can be trusted. Humans are disgusting vile creatures. For those of you living a happy healthy mentally stable life skipping with a basket of roses, good for you. I applaud you. You’re so much better than me.
I’m posting this for everyone.
I was tested positive in 1985. Back then there was no proper terminology for AIDS. It was know as the “gay cancer”. And then the treatment options were few. All my friends were dying each year. I always thought I would be next.
After many years I met a new best friend. He was a Doctor and He happened to be involved in the beginning of the AIDS movement. After a few years he got me to get tested again. At that time basically only CD4 counts were available. I still refused treatments.
Then few years later, viral loads were able to be detected. I took the tests and still refused meds.
As we watched my CD4s drop lower and lower ….. new treatments were available. Even to the point of only two pills. (my CD4s were 140) and he convinced me to try some the meds. The meds didn’t work and made me sick. We stopped and he tried a new set of 3 pills. It stopped my viral load and didn’t make me sick. I am still taking that same combo of meds now. My CD4s have never risen higher than 150, but the viral is undetectable.
My CD4s have been as low as 60 and high as 150 over the last decade. It’s amazing, it’s Sept 2018 , and I’m still here. And even though I maintain low CD4s, you’d never know to look at me that I have AIDS ! (even though I smoke and drink every day!). I look and feel great. You’d never know I was 62yrs old to look at me. (and yes there are 2 – 3 days I forget the pills) But I get back on them.
My point, Look forward ……take the pills… find ones that work…. PLAN ahead for your future! It’s there, so enjoy it. Who knew I’d last this long…. I didn’t . But here I am !!! Not going anywhere soon.
Look ahead, not behind. (maybe I’ll see you on the ski slopes in Tahoe!)
xoxo Chris
Hi Dean,
If your medication is making you feel like this, please talk to your doctor. They should be able to give you something else. Suicidal thoughts, are you able to talk to a healthcare professional?
Hi, I too am struggling with taking the triumeq which is working. I am depressed I have suicidal attempts X2. ( Overdose ) I just want it to end. Stopping the meds seems the only way out. Feel alone and sad . I struggle every night to take the pill.
Hi Naledi,
It’s great that you’ve started treatment. But it’s important to take your pills everyday. As with all meds, if you miss a dose you should take it as soon as you remember. But if it’s time for the next dose, just take one dose. Don’t take two doses at once.
It should be fine to carry on with your pills if you miss a dose. You should talk to your doctor about what happened, especially if you find the pills difficult to take.
Please see this link for tips on adherence.
hello I really need your help, I just found out that am HIV positive and I just started treatment, the problem is I only took my pills once and today is the second day since I haven’t taken them. could I experience complications once I start taking them?
Hi Julie, thanks for sharing your experiences, I am sorry to hear about your brother.