Q and A

Question

What happens if I stop taking treatment?

What are the side effects if someone stops taking her medication for HIV?

Answer

Thanks for your question.

May I ask why you are thinking of stopping? Many people find adhering hard at some in their lives but there are ways to make it easier. Likewise if you are suffering side effects – you can switch to meds that better suit you.

Several years ago a very large study called SMART reported that stopping treatment increased the risk of  serious complications. These included a higher risk for heart, liver and kidney complications in people who stopped treatment and also a higher rate of some cancers.

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. When this happens the risk of developing other infections and getting sick increases.

In the SMART study, most people who took a treatment break did pretty well for a short time. However, most people were not able to recover their CD4 count to earlier levels even 18 months after they restarted treatment.

Please talk to your doctor about who you feel. It is not generally good to stop treatment. It is definitely not good to do this without first talking to your doctor.

Please let me know if you have any other questions.

79 comments

  1. Roy Trevelion

    Hi Sbo,

    I’m sorry, you don’t sound well at all. But first thing is maybe talk to your doctor and ask some questions. Did they tell you what was causing your chest pain? And if they gave you treatment, was that for the chest pain or for HIV. They could be treating both of course. But it’s a good idea to ask what treatment you’ve been given and how you should take it.

    You can also find out if they’ve given you the same HIV meds as before. Sometimes if you have a break taking HIV meds, it’s best to start again with different ones.

    Starting treatment again shouldn’t give you serious sickness. But if your CD4 count is very low, under 50 cells, your doctors should monitor you for IRIS. IRIS occurs because the immune system quickly becomes stronger and identifies infections that it was previously too weak to fight.

  2. Sbo

    Hi I like to ask what thing first must I d coz I default treatment n I’m ready to start again n I’m worried maybe I’m gonna die coz I’m sick now iv got chest pain and I was at clinic today as a new patient they tested me n take the blood n they give me treatment so my question is if I start using them they won’t give me serious sickness?

  3. Roy Trevelion

    Hi Promise,

    I’m sorry you’ve not been feeling well. But how old are you Promise? It’s good to know that HIV meds can be given to very young children. And they’re safe and effective.

    What country do you live in. It could be that the clinic can help with support to get you through a difficult time. If you live in South Africa you can contact the Treatment Action Campaign. They might be able to help with local support.

  4. promise

    hi, am too young being on medication. i discover i’m reactive on the month of september 2018, i have been feelling sick at the past month, but that same month i wen’t for medication at general hospital, the only parson i let knw am possitive is my elder sister, the worst thing is am the only son to my father, have been on medicatin for two month and some weeks, and my body quality is not good, an people keep asking if am not ill my family are not financial good, an now my mum is not at home i find it difficult eating, but am still taking the medication, i never fail it for ones, the main think is that uptil now i can’t find out how i gotten this virus, i don’t know if the is any help u friends can assist, thank’s friends

  5. Lisa Thorley

    Hi Elizabeth,

    This won’t be a reaction to the meds. Also from what you’ve said you had these issues before you started medication. You need to speak to a specialist about it.

  6. Elizabeth

    In August 2016 I lost use of my hands and my legs although I had no pain and my vitals were normal. I was given prednisolone by the nuerologist and the gp at the same hospital gave me tb drug after mri scans of the brain and spine and chest xrays did not reveal anything, I was taken off the tb treatment after the tb gold test came out negative four days later. I was given antibiotics, catchnerve and vitamins and physiotherapy. I was living positively since 2000 without treatment and was fine. In May 2017 i was tested again, my viral load was 50,000 copies and my CD4 250. I was put on Viraday and immediately started feeling a cold sensation in my toes which gradually spread to my thighs. In august 2017 my viral load was 35 copies. the doctors told me it was not a reaction to my meds but a neurological problem. I have since changed form Viraday to Tuvada+Nevirapine to Trivenz, At this point tests revealed that I have no virus in my blood. The Aid specialist at our teaching hospital has put me on Dolutegravir+Lamivudine + Tenefovir. I’m in my second month on this drug but the frostbite sensation has not gone away. My legs swell up to my thighs when i take off my clothes. Im forced to always wear trousers and socks. Is it a reaction to the HIV meds?

  7. Roy Trevelion

    Hi Tish,
    I’m sorry to hear your brother is weak and sick. But you can try contacting these organisations https://www.aidsmap.com/HIV-AIDS-services/Georgia/cat/1225/page/1871278/. I hope they can help.

  8. Tish

    My brother lives in Georgia and they are denying him help to get his medicine what can we do? Becuz of that he is now weak sick Nd heading to the hospital

  9. Roy Trevelion

    Hi Dipuo,
    That’s very unfortunate. If you are off treatment, your viral load is likely to rebound within a few weeks. What treatment were you taking? Your doctor should be able to give you other meds that are in supply. What country do you live in Dipuo? There could be a local organisation that can help with support.

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