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 Agnes. Thanks for your comment – and lots of people are in a similar situation. Without more details it is difficult to provide individual information but please send me more details by email to questions@i-base.org.uk If you include your CD4 count and treatment history this would help. IF your second reg includes a protease inhibitor (PI) then it will still be working even if your viral load is still detectable. Newer drugs will be more widely available in the next year or two and your current combination could easily keep working until then. It is good to be hopeful and to talk to your doctor about future drugs including an integrase inhibitor called dolutegravir which might work even if earlier treatment has stopped working.
Hi I am having problems with treatment i am using second reg but is not working for me what puzzle me is that m taking responsibility of taking them in time please help i don’t want to die my children are still young I leave with hiv for 13 years
Hi Ade, I am sorry you are having such a difficult time. Please contact your doctor so that they are aware of your decision and how you feel. I wondered if changing to a very simple combination with no side effects would help. For example, early results from using just a single 50 mg small tablet produced very interesting results in people who were having trouble with 3-drug combination. This would be better than stopping all your meds. See: http://i-base.info/simoncollins/2015/10/why-dolutegravir-might-get-us-closer-to-ending-aids-next-step-further-research/
The trouble with stoping your meds is that you will have the opposite effect to the one you planned. With a good combination, there is no HIV. y stopping treatment, viral load with be detectable again within a week – and you will definitely be living as “Me, myself and HIV”.
Friday 22nd July and I have stopped taking my meds : truvada and viramune and antibiotic Sept rim. I never have ANY energy. Was diagnosed 1999 but didn’t start meds till had traumatic brain injury 6 years later. No viral load ever detected. My lowest Cd4 count was : 12. Now 150. Thrown all meds away this evening. Had energy before meds and yes before brain injury. Don’t think the meds are helping. Will try live a couple of feisty years at least as : Me , Myself. Not Me and hiv
Hi Fred,
Yes, having a good quality of life is important. And in 2016 HIV meds are easier to take and work really well. But taking 7 additional meds because of side effects sounds like it’s just too much.
But you can talk to your doctor about changing your meds to a combo that suits you. For example, sometimes diarrhoea can be a problem and many people take extra medication to deal with this. But many people ask to change treatment to find other HIV meds that are better for them.
In answer to the question above Angelina has said that “the reality is, you can live to be old and have a good quality of life, even with an HIV diagnosis.” But getting old also means that we have to juggle meds for age-related illness too.
I’m glad that you’re feeling healthy and that your doctor is monitoring your health. You can use this time to talk to your doctor about what HIV meds are now available to you, and make sure that you know about the latest meds that might make things better for you.
You can ask your doctor if a switch from your PI (protease inhibitor) would be better for you. Here in the UK a switch to an integrase inhibitor, such as dolutegravir, raltegravir or elvitegravir might be better.
Please keep in touch.
Best wishes,
Roy
I, too, stopped treatment on August 2, 2016. Before I did, I saw a therapist months before stopping and a few months after to rule out depression and/or anything else. Although my numbers were great when in treatment, I had a miserable quality of life. Started with Reyataz-Epzicom combo and one year later I was taking 7 additional meds for damage being caused by the cocktail to my body. So, I thought: what is the purpose to have quantity of life when I didn’t have quality? A year after stopping treatment, I feel healthy and with great quality of life. I still see my doctor to monitor my condition. So please, see a therapist just to make sure that your decision was not taken under pressured or anything. Feel free to contact me if need a friend. Fred
Hi Slindile. It is good that you are on treatment and that your CD4 count is now doing well. Once you start HIV treatment it is usually continued. It is not good to start and stop. Although this is new it shoudl be easy just to take one pill a day, but if you are having trouble please talk to your doctor.
i need help. i tested positive in march this year. At the hospital they gave me Tribuss immediately. My CD4 is now 385. Is it right to stop taking the medication now? i have taken the Tribuss for 3 months now.
Hi
Thanks – and good to hear from you. Please let me know your results when you get them. Even if your viral load is now undetectable it is good to talk to your doctor about the side effects that might be linked to efavirenz.
Alternatives in the UK would include:
1. An integrase inhibitor:
– dolutegravir
– raltegravir
– elvitegravir (ie Stribild)
2. A different NNRTI:
– rilpivirine
– nevirapine (only as last choice because of small chance of serious rash)
3. A boosted protease inhibitor – either darunavir or atazanavir.
You can carry on taking tenofovir DF and emtricitabine as single combined pill.
You will know whether this makes a difference – usually within a week. If there is no differnce then you can go back to efavirenz.
I hope things get better.
Hi Simon,
I admire your strength and compassion. Thank you.
– Last November, I had the results: 50,000 copies VL and 113 CD4 count (pretty bad)
– I’m taking the 3-in-1 pill that contains Efavirenz.
– I was able to manage the other side effects like skin rashes, muscle & joint pains but I’m still having depression and insomnia.
– I just had my blood extracted yesterday for VL test. Will wait for the result after 2 weeks..
Thank you for the encouraging and kind words. I am not yet ready to inform everyone about my status because of the stigma. I may not be able to handle it well.
I’m praying that one day, I’ll be able to get back to this site and inform you how I’m able to turn my life around.