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.
I haven’t been taking my meds for over 8 months now, I can’t go to a new clinic because it’s far and there are long queues there, u probably stay the whole day in the clinic because it is always full and that doesn’t work for me because I’m at school I can’t afford to miss my school work. I can’t be going to my old clinic because it is in the other province.
Hi Samentha, is there a reason you cannot go to the new clinic? or is it possible to stay with your old clinic and ask for longer prescriptions of medication – 2 months at a time instead of one. This can reduce how often you would need to go back.
How long have you been off your medication?
Hi I’m Samentha Bigger got diagnosed at the age of 17. I had nobody to tell even friends because I am so scared of being judged, I have been taking my medication correctly up to the point where I had to change clinic because I was now going to college, it’s a new place n I don’t know places there, I have stopped taking my medication because I can’t go to the new clinic, I’m even scared to as my new friends because I don’t trust them that much
Hi Dylien, how come you don’t have the time to go to the clinic? Would you maybe be able to ask to get 2 months worth at once instead of one? This can then reduce how often you need to go to the clinic.
Do you know how your friends and family feel about HIV? Some people find it helps to talk about HIV without disclosing to help get an idea of their families reaction. Do you know if you can get support from anywhere else? The Terrance Higgins Trust is a charity similar to i-base but is able to offer more support to talk: https://www.tht.org.uk/contact-us
It is great that your CD4 count was 500+ but when were you last tested? and do you now your viral load?
Hi,
This is Dylien. I was tested hiv positive in 2012, I started taking medicine and stop taking it after 5 or 6 years.
I got no time to get the medicine every month
And i don’t hae anyone to support me even if I think of every person in family and friends.
I feel so hard to take the medicine where ever I go as I have many places to visit for family purpose and my college purpose, and i have to stay sometime a week, during that very time i feel so hard to manage myself.
Now it’s been 5 years I stop taking medicine.
As I’ve known so far my last cd4 count was 500+
I’ve no other option other than to stop medicine and live the life under this struggle.
I really need help.
Hi Aldo, do you mind me asking why you are not on medication? If you choose to start it will help improve your CD4 count and stop it going down. This is a link to the i-base starting ART guide: https://i-base.info/guides/starting
Hi I am Hiv but I am not on medication not been on them over 2 years my cd4 is 155 and it is going down.
I know I will end up with
HI Gladys, I am sorry that you have had such a difficult time with all of this – it’s so great that you could find someone to help you through this. Are you currently on medication? and how is baby doing?
Is your partner preventing you from going to the clinic?
Hi
My name is gladys nkomo IAM from free state welkom but now IAM staying in johhanesbug in benoni I was 25 when I started drinking hiv medication and I was alone no one to hold my hand or support I only had a friend that I never thought she could understand what IAM
passing through but she was there for me even i had family that could help me out but I choose her it was so very,very hard for me course I had 2 little doughters with me I was a single parent
So I drank my medication until it was 6moth to return to my clinc for boold sampols when I get there they told me many stories I don’t understand so I left and never come back again stayed and stayed at home never go back to the clinic it was in 2017 October or November that’s how I end up taking my medication until I travel to jobug for better life I came here 2017 December in that particular time I was off on medication
Until February 2018 when I went in church where they told me to go to the clinic to testi went and tested I was still the same they started a treatment for me but I was still healthy and strong I started my treatment while I was in treatment I fall pregnant on April after the baby was born I was still in medication until when my baby was turning 1 year our date where the same so after the baby appointment I went to my th they did the same thing others did on the other side of the clinic I was going
I get angry and left to the shops for break when I return they were worse than before I left and never come back it was 2019 December since then I never return to the clinic but my child still going for her check-ups I have 2 years and going on the theard year now but the problem is not I don’t want to return back but my partner he is someone else a difficult person becourse of that IAM staying back I worry about him course I already know the jouny of the road
Hi Robert, I am sorry to hear about your wife passing and how you are now feeling. Have you been able to speak to anyone about this? Maybe friends/family or even a therapist? What you’re feeling is completely normal and is something no one should have to experience. I understand why you want to stop your treatment but this will not help you or your late wife. Staying on medication will let you remember your wife and carry on her life’s wishes.
Stopping your treatment will not have a timeline to you passing. It is possible that you can live for years without your medication, but you experience effects from your illnesses which impact on your quality of life.
I am sorry but suicide is not going to bring your partner back. Instead you can choose to live to remember her. If you are feeling suicidal it is important you speak to someone. It is absolutely fine to walk into an emergency department at a hospital and talk with someone.
Please follow this link for some further guidance and signposting to other organizations that may help: https://i-base.info/qa/11906
Josh.