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.

489 comments

  1. Lisa Thorley

    Hi Umbro,

    If you haven’t been eating properly, this may explain the weight loss as well as the pimples and changes in your skin. You might want to try eating properly.
    It’s not advised to stop talking medication, therefore you should stay on them. If you stop and start your medication you risk developing resistance.

  2. umbro

    Hey, I have taken ARV for a month now. since I started, I have developed pimples and oily face, I have lost weight and shape too. I have not been eating well since my wife is away. I would wish to quit medication for 3month and start again when my wife returns. will this affect me greatly?

  3. Roy Trevelion

    Hi Luthando,

    I’m sorry to hear about your recent diagnosis. But for most of us who are HIV positive, HIV can be easily managed and treated.

    HIV treatment (called ART) is highly effective and generally easy to take. ART is now routinely recommended for anyone who is HIV positive.

    But what did your doctor say about the reason to start after 6 months? Please get in touch with your doctor and ask why you need to wait to start ART.

    Here’s the Introduction to ART for lots of info about HIV treatment.

    If you live in South Africa you can contact the Treatment Action Campaign at this contact link for local support.

  4. Luthando

    I have just found out that I am HIV positive but my doctor says I must start the treatment after 6 months
    So I want to know if that is possible?

  5. Lisa Thorley

    Hi Sinazo,

    What are you taking? How long have you now been back on them for? Did you have similar side effects when you first started ARVs?

  6. Sinazo

    I started taking ARVs last year and I stopped for a month due to lockdown, I restarted taking the same dose without consulting a doctor and now I feel muscle joints are painful, may I continue with the same dose and the side effects will disappear as time goes because it’s difficult to go to doctor, or the side effects will never disappear?

  7. Roy Trevelion

    Hi Mukiza,

    It’s good that they’ve started treatment again.

    But if you decide to stop treatment, your viral load is likely to rebound within a week or two. If you stay off treatment your CD4 count will start to drop over the next few months.

    So it’s a good idea to talk to the doctor about having your CD4 and viral load tests done again. You can talk to the doctor about drug resistance and ask for a resistance test.

    It sounds like they’re feeling well, which is good.

  8. Mukiza

    Just wish to know what happens or likely to happen for someone who stopped ARVS for 4 Months voluntarily and restart again the same dose. No side effects no signs of bad feeling and psychologically the person is strong. The bad thing the doctor was not consulted up to know. CD4 was very ok and viral load undetectable after 4 years under ARVS. What can I advise to this person? Thanks

  9. Roy Trevelion

    Hi Joseph,

    Unfortunately, no guidelines recommend any benefit from starting PEP after longer than 72 hours of possible exposure.

    But what did your doctor say about your symptoms? It’s a good idea to discuss these with them.

    The best way to confirm whether the PEP has worked is to test a month after PEP is finished. You then need to follow up with a confirmatory test three months after you complete the PEP.

    Here’s a link to the tests used to test for HIV. You can check the tests you’ve had with this info.

    If your HIV positive partner was taking HIV treatment and has had an undetectable viral load, then the risk to you was zero. Please see Undetectable = Untransmittable at this link.

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