Q and A

Question

How long will I live if I stop taking my medication?

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?

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 and 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, many in your situation often 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) 2017 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 January 2017 from a question posted in January 2012. The answer was updated to reflect changes in treatment guidelines.

298 comments

  1. Roy Trevelion

    Hi Mike,
    I’m not sure if the young man lives in the UK. But i-Base is in London.

    But you could try two ways to get info and possibly help in the US:

    1) From local and/or national HIV organisations that provide treatment and benefit advice. If they are in a large city, there is likely to be a good HIV support group. If not, then national services like Project Inform and GMHCare worth trying first. Most US states have free ARV provision under ADAP, but there are both restricted ARV prescription list and sometimes waiting lists are full. See asap.directory.

  2. Mike

    I am so sorry you feel this way so young. I am in the US and at 62 have been + for 31 years. I am also considering stopping. I am in GREAT health, but I simply can no longer afford the drugs! I make too much for assistance, and too little to be able to afford mortgage. I already have ruined my credit for unpaid hospital bills for normal aging things! You are LUCKY to be in the UK where your drugs are paid for. I just found out that my next 90 day supply of Genvoya would be $2600-MY COST AFTER insurance!

  3. Roy Trevelion

    Hi John, Have you recently tested HIV positive, and are you on HIV treatment (ART)? Taking ART is the way to improve your CD4 cell count if you’re HIV positive. You can read the frequently asked questions about starting ART here. And there’s more info in this introduction to ART.

  4. john

    please I’m Hiv Aids positive at age 27 and I need some help how to improve my cd4 cells

  5. Roy Trevelion

    Hi Den, Viral load drops very quickly when starting treatment. And this can be by about 90% in most people. But there is usually a second phase when reduction is slower. It can depend on how high your viral load was when you started treatment. Please see a similar question here. You can ask the doctor if your CD4 count has started to recover too.

  6. Den

    My viral load was 118 after 6 mos of taking Efav/Lami/Tenofovir.

    I was ask to consult with the doctor but the doctor said it was okay as long as it is below 200. He said that it might be because my body is just slow with the response to drug. So, he maintained me in the same medication.

    Has anyone encountered the same case as I did?

  7. Roy Trevelion

    Dear Anonymous, I’m sorry, it sounds like things have been really tough for you. But it’s really good that you’ve found a support group. And it’s great that you are thinking about the future and about going back on treatment. Can you talk to the doctor about starting meds again? They should be able to tell you if you can continue or if you need different meds. Is it possible for you to ask someone from the support group to go to the doctor with you?

  8. Anonymous

    Hi

    I am HIV positive and have been on treatment for over four years and i was responding well to the treatment. However my life took a strain after i have lost the only person i trusted and relied on especially with my treatment and support. I am now taking care of my 2 siblings who drive me crazy and disrespects me at most times. I have tried commiting suicide 2 times but did not succeed. I started by stopping my treatment hoping that the virus in my body would be quicker to kill me but i guess i been fooling myself, i am even ashamed to even mention the other ways that i used to commit suicide.

    I have now joined a support group for about 2-3 weeks now and I am slowly finding myself but I am worried about the virus growing in me. I want to go back to taking treatment but what are the chances that the virus has advanced and will I be taking the same treatment i was taking before or are they going to change it. Also what are the chances of me having more kids since i have lapsed on my treatment. Please help.

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