Question

How can I look after my health if I have to stop treatment?

2 March 2025. Related: Access to treatment, All topics.

Answer

Answer: Simon Collins

This Q&A is about when ART is not available. WHO and other guidelines still recommend ART for everyone living with HIV.

This info is free to copy and adapt for different settings.

1. What if I am running out of meds?
2. What if I still have some meds left from a combination with several daily meds?
3. Could I take fewer doses to make my meds last longer?
4. Can I share my meds or borrow some from a friend?
5. Can I register at a different clinic?
6. What if I already stopped ART?
7. Will I be okay if I have to stop ART for a short time?
8. Do some people have a more urgent need for ART?
9. What is the risk from stopping ART?
10. What if HIV did make me ill before or if I had a low CD4 count?
11. What if I get new symptoms after stopping?
12. What will happen to my viral load off ART?
13. Will U=U still work if I have to stop ART?
14. Will stopping ART affect my sexual partners?
15. What happens to my immune system after stopping ART?
16. How fast will my CD4 count drop without ART?
17. What are the signs of a low CD4 count?
18. Can I take PrEP instead of ART?
19. What if I have run out of medicines for other infections, for example TB?
20. Will ART work again when I do restart?
21. How can I stay healthy without ART?
22. Can people who use the clinic do anything else to help?
23. Who wrote this information – and further links

1. What if I am running out of meds?

Everyone hopes that HIV clinics will open again soon or new services will be arranged.

But some people will already be running low on HIV meds.

Other people may have already had to stop ART because the clinic was closed.

This is a time to be more active about your health.

2. What I if still have some meds left from a combination with several daily meds?

Most HIV combinations involve a single daily pill. If your meds involve more than one pill, it is best to stop all these meds at the same time.

This is because they are not strong enough unless they are all taken together.

3. Could I take fewer doses to make my meds last longer?

This might be possible for some people.

If you still have several months of meds you might be able to make them last longer.

The is only if your last viral load was undetectable. The FOTO studies (Five On Two Off) were very effective. They showed that viral load can stay undetectable by taking only 5 doses each week.

This could slowly build up the number of pills you have. This could be an emergency supply in case it takes a while for the clinic to reopen.

Please try to talk to a health worker about this first.

4. Can I share my meds or borrow some from a friend?

It is only okay to share or borrow meds if you know that both people use the same combination. Otherwise, this is not a good idea.

If one person has a large stock of meds, then sharing these for a short time might be okay.

This might help someone at a higher risk.

5. Can I register at a different clinic?

Hopefully yes. Try to find out whether any other clinics are still open.

It is also good to contact the closest hospital to see if they are running HIV services.

The best option is to register at another clinic or hospital. This is so you can continue to get your meds and not need to stop. If this is not possible, then a short time off treatment will be okay.

Please find out as early as you can about these options. Don’t just leave it until your meds are nearly finished.

Lots of other people will be in a similar situation, so the government hospital might be very busy.

6. What if I already stopped ART?

Stopping treatment for a few weeks to several months will be okay for most people living with HIV.

Your immune system will have been getting stronger when you were taking ART. It will stay strong for at least a few weeks or months.

Your HIV meds will still work when you restart them.

Please take any new symptoms seriously.

More information below is about the safety and the risks.

7. Will I be okay if I have to stop ART for a short time?

Yes. Nearly everyone will stay well and you may not feel any different.

Stopping ART once, for a few weeks or even a few months should not make you ill.

Although it is better to stay on ART, this is a special situation.

A short time off treatment will be okay.

8. Do some people have a more urgent need for ART?

Yes. Although most people will be okay if they stop ART, some people need to stay on ART more urgently.

If access to ART is limited, these people at the highest risk should be treated first.

• Children who are 5 or younger.
• Anyone who is pregnant and/or breastfeeding.
• People with active TB, severe bacterial infections or cryptococcal meningitis.
• People with a very low CD4 cell count (less than 50, 100 or 200 cells/mm3).
• People with a high viral load (over 50,000 copies/mL).

9. What is the risk from stopping ART?

The risk from being off ART while the clinic is closed depends on two things.

1. How long you are off ART. A shorter time is better.
2. Your individual HIV history. The risk will be higher if HIV ever made you seriously ill.

It will also be higher if you ever had a low CD4 count. Not everyone will have a CD4 count now, but this used to be very commonly used.

10. What if HIV did make me ill before or if I had a low CD4 count?

If you have this higher risk, it is important that a doctor knows about this.

It is also more important to register at a different clinic or hospital.

This is so that you can restart ART more quickly.

11. What if I get new symptoms after stopping?

Please be aware of any new symptoms after stopping ART. For example, if you have difficulty breathing, a high temperature, night sweats or a serious rash.

These could be signs of a serious illness or a very high viral load.

It is important to contact a doctor if you do not feel well.

12. What will happen to my viral load off ART?

If you have to stop ART, your viral load might stay undetectable for 2 to 3 weeks.

But after this time, it is likely to increase very quickly. This will take it to much higher levels.

Although you may not feel any different, a high viral load will make HIV easier to transmit.

For example, if your sexual partners are HIV negative it is important to use condoms, if they are not using PrEP.

13. Will U=U still work if I have to stop ART?

No. Undetectable = Untransmissible (U=U) only works when you are taking ART.

This will increase the risk to your partner if you don’t use condoms or if they don’t use PrEP.

If your partner doesn’t know you are living with HIV this will bring up other issues.

Hopefully, ART should become available again soon. Please see the next question below.

14. Will stopping ART affect my sexual partners?

Having an undetectable viral load also protects your sexual partners from HIV. This is because Undetectable = Untransmittable (U=U).

U=U means that someone with an undetectable HIV viral load on HIV treatment (ART) cannot transmit HIV, even without using condoms or PrEP.

If you can’t get your meds though, you can’t rely on U=U.

After two or three weeks of missing ART, viral load will rebound. That means using condoms or your partner using PrEP to prevent HIV.

Please think about these issues.

• Does your partner(s) know that you are living with HIV?
• Is it safe for you to tell them?
• Could you change the kind of sex you have, or start using condoms?

15. What happens to my immune system after stopping ART?

Your immune system will already be stronger because of ART.

It will also stay high for a while if you stop ART. For example, it might take a few months before it starts to drop.

A CD4 test can measure your immune system, but this test is now used less.

This means many people do not know what their CD4 cell count is.

Generally, a CD4 cell count above 500 is normal. The risk of becoming ill increases as the CD4 count becomes lower.

If a CD4 cell count goes below 200, this increases the risk of serious illness. People who have a low CD4 cell count may need other medicines to prevent illness.

Restarting ART with a CD4 count below 50 may cause new symptoms, usually within six weeks. This is called IRIS. Your doctor needs to be aware of this too.

16. How fast will my CD4 count drop without ART?

This will be different for everyone. Different people lose CD4 cells at a different rate.

Most people can keep a strong immune system for many years. But 1 in 4 people (25%) can lose CD4 cells quickly.

17. What are the signs of a low CD4 count?

ART is most important when the CD4 cell count is less than 200 cells/mm³.

Also, the lower it is below 200, the more important it is to be on ART.

No-one with a CD4 below 50 should ever stop ART.

Because CD4 tests are not always available, the following signs can mean the CD4 count is low.

• Falling ill with a fever that keeps coming back.
• Having trouble breathing or a tightness in your chest.
• A persistent cough.
• Chills and a high temperature.
• Extreme diarrhoea.
• Swollen glands.
• White spots or patches on the tongue or in the mouth.
• Being constantly tired and weak.
• Rapid unexplained weight loss. For example, losing 5% of your weight over 6 months.
• Unusual rashes or bumps on the skin.

If you have these symptoms, please go to a clinic or hospital for healthcare. This is co you can restart ART. Even if this is a different clinic or hospital that might not be so friendly.

Your health is important, and it is a human right.

18. Can I take PrEP instead of ART?

This is not really a good idea.

PrEP pills only contain two HIV drugs. Without a third drug you could become resistant to these two drugs.

This will stop these HIV drugs working when you restart HIV treatment.

On balance, the risk of drug resistance is more serious than taking a treatment break.

However, if you are really ill, PrEP might be better than nothing.

19. What if I have run out of medicines for other infections, for example TB?

As with HIV, TB meds should also be made available again.

If you can’t speak to a doctor, please talk to a nurse or pharmacist about other meds that you used to get from the clinic.

20. Will ART work again when I do restart?

Yes, it is unlikely that drug resistance developed from stopping this one time.

Even if you have stopped for other reasons in the past, modern HIV combinations don’t easily generate drug resistance.

21. How can I stay healthy without ART?

Although a short time off ART can be okay, this depends on restarting treatment as soon as you can.

Looking after your health in other ways is still important. For example, eating a good diet and regular exercise is good for everybody.

Cutting down on stress, alcohol and cigarettes is also good for your health.

But ART is needed long-term for HIV.

For example, herbs and supplements will not help HIV.

22. Can people who use the clinic do anything else to help?

Yes. It is sometimes easier for a group of people to ask about services than doing this on your own. You can support each other. You can say the group represents many people.

The group could ask the government to make services available. The group could ask the government to fund these.

You can also help make sure information reaches everyone who uses the clinic.

For example, you could adapt the general information here to make it specific to your clinic.

The group can ask for this information to be displayed in the clinic.

23. Who wrote this information – and further links

The following HIV treatment activists in CHANGE helped write these Q&As. They have been involved in HIV treatment and prevention work for many years.

Tracy Swan, Roger Pebody, Richard Jefferys, Giota Touloumi, Kennedy Mwangi, Nia Dunbar, Akmalakram Ridzuwan, Ali Asghar Abbas, Stephanie Chamberlin, Juma Kwame, Simon Collins.

It has also been reviewed by doctors who treat people living with HIV.

CHANGE: Community Health and HIV Advocates Navigating Global Emergencies
https://pepfarwatch.org/pepfar-funding-freeze/

Email: contact.change.2025@gmail.com

Other related Q&As

• Where can I get information about the impact of cancelled US funding?
• What is happening about US funding that closed my HIV clinic?
• Can I split tablets to make my meds last longer? – until the President crisis is over?
• What happens after stopping ART? What is my risk?
• Why did my HIV clinic close last week and when will it reopen?
• Can fewer doses make my meds last longer as my clinic is closed?
• How will we get meds in Pakistan if there is the USAID ban?

This page was first posted on 26 February 2025 and has been updated since.