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 few weeks. 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.

How quickly this will happen though varies a lot. The lower your CD4 count was when you started meds, the quicker your CD4 is likely to fall without ART.

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.

395 comments

  1. Simon Collins

    Hi Ray, stopping meds for two weeks affects different people differently. To be able to give useful info it would help to know roughly high low your CD4 count ever went and how high your viral load was before your started treatment. Depending on where you are travelling to have you thought about contacting a local HIV treatment centre or HIV organisation in case they can help.

  2. Ray

    Hello,
    I am on travel and have accidentally left my HIV medication at home. It will be about 10-15 days before I have access to the medication again. What are some of the possible negative effects?

    Please email me.

    Thank you!

  3. Josh Peasegood

    Hi Joan, where are you travelling? and what is the treatment you are taking? do you know your viral load?

    In most cases a single break from treatment is unlikely to cause any problems. After 2 weeks it will be advised to have a viral load test a few weeks after restarting treatment. This is to make sure that your treatment is still working and that your viral load is being suppressed.

    In some countries you will be able to access emergency medication e.g., in the UK you can make emergency appointments at sexual health clinics to access treatment.

    In rare cases it is possible for resistance to develop to your current treatment (this is why the viral load test is advised). In these cases you would be required to switch the type of medication you are on to continue to suppress HIV. Missing treatment on one occasion is unlikely to happen and you should not be concerned about this.

    While not on treatment you cannot rely on U=U due to possible rebound and transmission risk to others.

  4. joan

    Hello,
    I am on travel and have accidentally left my HIV medication at home. It will be about 10-15 days before I have access to the medication again. What are some of the possible negative effects?

    Please email me.

    Thank you!

  5. Josh Peasegood

    Hi Peter, when not on treatment CD4 count will fall and viral load will increase. It is not possible to say how quickly your partners CD4 count will drop. Some people can have a CD4 count below 200 only after 2 years whereas others can have a CD4 count above 500 after 15 years. HIV responds differently in each person and this is why it needs to be regularly monitored.

    As your partners CD4 count falls they will be at risk of other illnesses. These are called opportunistic infections and is explained here: https://i-base.info/ttfa/section-1/12-cd4-count-cut-offs-and-the-risks-of-opportunistic-infections/

    As your partner has a high viral load, there is also risk of transmission to you if you are not using a condom/not being on PrEP. Have you had any discussions with your partner as to why they are not wanting treatment? would they be willing to talk to a doctor about this?

    This graph shows how CD4 count and viral load changes over time without ART: https://i-base.info/ttfa/section-2/14-how-cd4-and-viral-load-are-related/

    Was your partner experiencing side effects while on treatment? Do you know the name of what they were taking?

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