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.
My wife died October 20 2021. I died the same day its killing me being with out her after 39 years. i;m old and don;t want to live anymore. I stopped taking my meds 3 days after she died. Threw them all away. My diabetes pills,High blood pressure pills,colorestal pills.Its going on 4 months hope it wont be much longer.
Hi ThisIsLife, thanks for your reply which I have also edited to focus on two main points.
The firstpoint is that you are probably right. More money is spent on research into treatment than research into a cure. Both are essential. But we needed effective treatment first to keep people alive, giving scientists more time to work on the much more difficult challenge of a cure.
This article shows the latest advances and why this is still so difficult.
https://i-base.info/htb/41802
Here is a less technical version:
https://i-base.info/ias-towards-an-hiv-cure-2021
The second point shows a misunderstanding about this website. This is is a moderated Q&A resource. Posts need to focus on information that is supported by evidence. This is for medicines, herbs or supplements.
i-Base does not want to add to the inaccurate info that is found on many other internet sites.
Defining evidence is easy – it needs to have some basis in well-designed research studies. One definition of how we decide this is that it usually needs to be presented at a conference or published in a medical journal.
Thanks for the response Simon. We can be told a cure is being researched which may be true but the money that is spent/earned on medications far outweigh that invested into finding a cure. […] Unfortunately, your need to remove supplements that I mentioned that are all being used in one way, shape or form […] furthers my opinion & point of how things are being covered up […] Who gets to say what is evidence & what isn’t? …
HI Robert, I am really sorry to hear that you are going through such a difficult time. I can’t say I have the answer – or that any one answer is right for everyone.
Even without more details or knowing you personally, there are lots of other reasons to be more hopeful. But dealing with this pain on your own often makes it difficult to see better options.
Have you talked to your friend about this – or have you talked to any of the support services. This link includes phonelines in many different countries, including the US (as you mention the VA and being a vet):
https://support.google.com/websearch/answer/11181469
The VA will also have services run by people with similar background experiences to yourself – and finding something each day can slowly change how you feel.
This is still so soon after loosing your wife – and you need to grieve properly for her to then be able to continue living as part of the respect you had for each other. Your wife would not want to see you this way or to hear the things you are saying. Maybe looking at these other options would be a way to honour her memory and the time you had together – or this could be one of the things you could talk about.
This is also a really difficult time of year – especially if we have lost people close to us. Cancelling your appointments and talking about stopping your meds is a slow process that makes be hope that you are really just having trouble right now – but that you cold feel differently in a few months with a little support. You could even use the strength of your feelings right now to help other people in the future.
Because you are thinking of making a will – and this is a good thing – it shows you still have feelings and thoughts about other people and things in life. If you end your life you will bring pain to your friends and make this worse for everyone.
Although you can not see them right now, good things can maybe come from everything your are feeling, including a deeper love and appreciation and love for the happiness that you were lucky to share together.
That’s what I’m going to do I have diabetes and high blood pressure my cholesterol Is bad, I lost my wife of 32 years in October I have no family or children. I’m all alone. The pain and suffering are unbearable, I’m a Vietnam vet so I used it to bury my wonderful wife and there is a spot with her waiting for me. I’m getting a will made up to a really good friend of mine then I’m stopping my pills. I canceled my VA appointments and did not order any more meds.
Hi Sam, thanks for bringing your experience to the discussion with three main questions.
1. Discussions about the different roles of pharmaceutical companies has been included many times in these forums. It is usually more complicated than whether things they do are good or bad. On the one hand they develop new drugs – including many HIV medicines. But the marketing and financial parts of these side companies often work very differently to research departments, often setting prices that are too high and focussing on profits for shareholders.
As in the earlier discussion, the companies working on treatments are also working on cure. And the idea that an HIV cure or vaccine already exists but is being held back so that more medicines are sold is nonsense and is not true.
These two recent articles from STAT news discuss responsibilities of drug manufacturer’s and drug pricing in the US.
2. Mental health is complicated. But support should be available to help at every HIV clinic. People living with HIV often have higher rates or anxiety and depression compared to similar people in the general population who are HIV negative. This doesn’t mean they are caused by HIV because people who are having these difficulties in life, might also be at higher risk of catching HIV.
Either way, wanting to stop treatment is something that your doctor and clinic need to know about if they are going to be able to help. Luckily, for most people, support can show you new and more positive options and ways to move forward. Please do talk to your doctor about how you feel.
3. There is no benefit for HIV from the herbal compound called Nigella Sativa (black seeds). I do not believe the results of the study you refer to. It was published about 7 or 8 years ago and nothing else has been reported since.
If Nigella seeds worked, then researchers would have continued to report longer-term outcomes and in larger groups of people. The minor journal it was published in has also been reported as maybe not being a genuine peer-reviewed publication.
Other online Q&As have discussed Nigella seeds.
Will nigella seeds help my CD4 count?
https://i-base.info/qa/13017
Can I take black seeds with my HIV medication?
https://i-base.info/qa/17818
Hi all,
It’s comforting to see others are feeling similar about big pharma and not necessarily having the interest of patients at heart. I contracted HIV when I was 19 and I’m just about to turn 27. The reasons for coming off medications (triumeq) have been building up, I haven’t yet withdrawn, but I feel like I will do at some point. I’m not depressed, nor do I want to die, but I’m also not afraid of dying as I’ve processed so much I realise not everything is about longevity. The only anxiety I have is upsetting my family and not being able to help my loved ones in the future, because recently I’ve had a new passion for life, but that epiphany has included medication withdrawal too.
I’m from London and still here. I don’t feel it would be wise to withdraw whilst I’m still here as it’s stressful and polluted. I hope to move to a very rural place and work the land. Working the land feeds my soul like nothing else.
Also has anyone heard about Nigella Sativa? There was a study in Nigeria where 6 hiv positive patients who didn’t respond well to pharmaceuticals, took nigella with honey which suppressed the virus. I think the honey industry is a bit cruel and The sugar replacements they feed the bees are bad for their health. Nigella however grows very easily here. This is something I will speak to a herbalist about.
Warmest wishes
Sam
Dear ThisIsLife
Thanks for sharing your experience and ideas – and also for the caveat at the end.
As comment back, stopping HIV treatment causes viral load to quickly rebound and CD4 count to drop (usually a little later). No studies have reported that CD4 counts increase after stopping ART. These are facts, reported in dozens of research studies.
Even though some aspects of HIV care are commercial, the same companies that make the latest HIV meds are also investing in trying to find a cure. This is another important fact that many people are not aware of.
The only edits I made to your post were for some of the supplements you listed at the end. This is because you included some things that have been proven to be harmful, and others that don’t have any evidence of benefit. I didn’t want to add to further confusion online about them.
I think the most straight forward answer to this questions is that untreated HIV can & probably will cause/allow other complications to ones health. Each person is different & even if we were all alike, the variables in each of our lives will be different as well so if 2 people stopped taking their meds, one person may die sooner than the other if they catch an illness & the other doesn’t.
It could be a short or long road to rough health & issues until death. On the other hand, one could possibly go on a live a normal life & their CD4 count could stay decent viral load undetectable.
After reading through pages of comments, it is clear that most people are just repeating the same textbook medical literature. While it may be true or some of it true, there probably is more to it. The idea of ART & the concept of how the body works/handles HIV & ART has some solid ground for the reasons why one should continue or start ART. But one thing is very true about the pharmaceutical industry, IT’S FOR PROFIT. Rarely, do drug companies want to cure anyone. The goal is to have a returning customer so of course the ART is recommended & a “good” thing & it’s obvious that the medical schools preach this & doctors recite it.
Don’t get me wrong here, they do help. I have been living with HIV for over 5 years now & started ART within weeks of finding out I was detectable. Shortly after that, I became undetectable & only once during the entire time was I detectable again but now detectable ever since. Me getting tested was only because I hadn’t been in years & decided to get a full on test for everything. I had shingles before I was tested so one could argue this was a sign that my immune system was compromised although I was feeling fine otherwise.
I am here & writing because I am also considering stopping my ART. After reading countless comments, the typical doctor response became repetitive with some giving detail behind things & others just repeating the same old stuff that was read in a text book. There has been plenty of stories out there where meds and vaccines actually harm people instead of help.
I noticed a few comments stating that after stopping the meds, their CD4 count went up. I know doctors look at the viral load over the CD4 count but there still should be acknowledgment over the CD4 count. My CD4 count hasn’t gone up much after 5+ years even though I’m undetectable. My doctor decided to stop checking it until I asked him to, then I was billed more because it wasn’t preventative apparently. The whole thing is a joke & telling someone to consult their doctor isn’t always right. I’m switching doctors due to his opinion on my health & what I should do rather than listening to me & respecting my decision. Not about ART but about vaccine related stuff where I gave him tons of factual evidence & he just ignored it, giving me some stock, textbook response, much like I see being done here.
I went through depression when I first found out I was positive. I had a couple of episodes of depression. I shut people out. These stories & feelings are real and as much as we all want to help & support, sometimes the only way for someone to get better or move on in whatever way they want to, is to deal with it head on which those that have decided their fate, seem to be doing. I wish the best for everyone here & hope that whatever decision they make, results in happiness & less suffering for them & their loved ones.
Reading about people feeling better & having a higher CD4 count (which should result in better immunity) after stopping their meds is really encouraging. I’m certainly not saying that people should stop taking meds but it sure gives me more reasoning to consider it due to the fact that after 5 + years of an unimproved CD4 count plus I can tell my body takes longer to heal ever since. I understand the viral load is the important part but my CD4 should be going up too.
If the body feels better off meds, why still take them? Because that’s what the doctor tells you. They are not always right & sometimes they mean well but don’t realize they’ve possibly been fed half truths. I’d say if you stop taking meds, pay careful attention to your body & health. Also get your labs checked every 3-6 months. I get my labs checked every 6 months. If I stop taking my meds, I will not tell my doctor. I will act as if nothing has changed & see what the test results say. The minute you tell your doctor anything, they’ll apply whatever textbook or big pharma crap to it. I learned real quick where my doctor stands on his practice & it certainly isn’t in my best interest. Maybe he is just too brainwashed & thinks he’s doing the right thing but at the end of the day, any doctor of mine will support me in my decision whether or not they agree with me. Tell my the pros & cons, then let me decide.
If you can afford the lab test & are overall healthy, why not just play the game & act like everything is normal. Go to your doctor apts., get your CD4 & viral load checked. Let your doctor believe you’re still on meds. In due time, you’ll know based on the lab results, if what you are doing is working for you or not. If your viral load goes up, well then, you probably should get back on your meds. If everything is stable & you’re in good health with good labs, then why take the poison? Maybe 1-2 years of pretending, you can let your doctor know that you have been off meds, feeling great & doing great. Maybe then, they will consider to thinking more openly & help their patients in other ways.
When I stop taking my meds, I will be timing it where I get my labs checked within 6 weeks of stopping. Then, probably again in a month or so depending on my body. My approach will be to start taking chlorine dioxide with DMSO as my meds run out. At the end of 3-4 weeks on CD & DMSO, I will analyze how I feel & shortly thereafter, have my labs checked. If my viral load is still undetectable, great! Then I’ll keep monitoring everything till my next labs. Maybe by then my CD4 count will actually be better than it is on ART. I do think there is a place for medicine but I believe more in the healthy lifestyle, diet & natural remedies because most (not all) medications are only there to keep people coming back. If I stop taking my meds but still monitor my heath through labs & never become detectible again, I’ll know I did the right thing & the meds maybe helped me get to a point where I don’t need them….or my approach will not work, I go back to the meds & hope that I didn’t do too much damage in the meantime. I’d rather take my chance than live wondering.
All I can say to everyone is that you know your body & life situation better than anyone else. If you are not wanting to live, that is your choice. I was there more than once. The minute I stopped caring about what anyone thought about me, lived for me & only me (& dog), my perspective on life changed & things got incredibly better. If you want a timeline on life, it’s a tough one but stopping meds could accelerate illness which could achieve your goal sooner or it may not & you continue on. If you want to stop taking meds because they don’t make you feel good or you just don’t want to take them (like me), research holistic approaches & implement them. If possible, monitor your health per usual & still use your doctor to your advantage. I don’t plan on telling my doctor a damn thing & I’ll let them believe what they want because you’ll really see how governmentally schooled they are. But also keep in mind that the decisions you make could hinder your health so be ready for that. We can’t rely on our doctors anymore. Mine suggests so much that I don’t believe in. He wanted me to do surgery for a wart, I put ACV undiluted on it for 3 days, it died & fell off. It never came back & it’s been years. I use ACV for all kinds of stuff. Nature has the cure for most things but sometimes modern medicine can help stabilize us while we transition to traditional medicine.
Some people consider various supplements. Of coarse you’ll find a lot of negative about this stuff but I’ve used all of it a lot & I’ve only felt good from this. The more push to scare/fear people away from something usually means there’s probably some real solid use for it so I use fear pushing as a way to gauge how good it probably is…it’s not always the case but so far, for me, the fear was all baseless & just trying to convince people not try it. Always do your own research, try to debunk both sides of the story because that usually leads to the actual truth.
**Nothing above is advice, just my opinion and experiences of true self-tried approaches.
Hi Khalipha, have you seen a doctor about this? If you stopped taking your medication for a month there may be a chance of drug resistance, or your body is readjusting back to the medication. For the symptoms you describe these concerns would need to be raised with a doctor.