Question

What happens after stopping ART? What is my risk?

9 February 2025. Related: Access to treatment, All topics, Stopping treatment.

Hi there, I have no HIV meds left and my clinic is still closed since last week. I have been really careful taking meds. I am now scared to be off treatment. Am I going to die and where can I get meds?

Answer

Answer: Simon Collins

Hi there

I am sorry you are having to go through this, but many people are working to get clinics to reopen again soon.

This means that the time off meds will hopefully only be for a short time.

Although it is better to always stay on meds, a short break will likely be okay for most people. This means there is low risk for the first few months, for most people.

These are the three main stages after stopping ART.

1. If your viral load was undetectable, it might still stay undetectable for 1 or 2 weeks. After this time, viral load is likely to rebound to much higher levels. If it wasn’t undetectable, then it will start to become higher straight away.
2. Over the next few weeks and maybe months, your viral load will go back to how high it was before you first started treatment. If your viral load was 40,000 before you started treatment, it is likely to become this high again over the next few months. This also means that U=U will not be working when you are off ART. Please take care with partners who might be HIV negative,
3. Luckily, your CD4 count will usually take longer to return to the level before you started ART. Viral load changes quickly but the CD4 count is a little slower.

One important caution is that there is a small chance that some people might have a very high viral load 2–3 weeks after stopping ART. This can be a bit like seroconversion, with similar symptoms. If you start to feel very ill, including if you have chest pains, it is important to see a doctor or go to hospital.

Hopefully the clinics will be open again much sooner than this though before your CD4 count becomes very low.

These are average responses though. If your CD4 count was ever less than 150 cells/mm³, it is more important that you find a way to connect to another clinic.

If your CD4 count was ever less than 50 cells/mm³ please find a way to let a doctor know about this straight away.

Other things to do

• Keep in contact with your clinic.
• Ask whether you can go to another government clinic.
• Ask when the clinic is likely to open again.
• Ask if anyone can talk to you about your individual history and risk.
• If it is easy, try to stay in contact with other people living with HIV.
• Does your clinic have an HIV support group? If yes, then together you can support each other.
• If you know anyone who stopped ART for other reasons, even a year or two ago, ask if they still have their old meds. Even if they are past the use by date, these are still likely to be okay.
• Although PrEP treatment includes some HIV meds, PrEP on its own will not be strong enough to use as treatment. PrEP could make you drug resistant so that your HIV meds might not work when the clinic reopens.
• Try to lead a healthy life while off ART. For example, stay physically active, eat a good balanced diet, try to avoid stress and try to rest and sleep well. If you use them, try to avoid or cut down on cigarettes, alcohol and recreational drugs, as these knock your immune system.