Additionally, each link below links to a page of the most frequently asked questions (FAQs) on some of the most popular subjects.
It can be empowering to look through some of these Q&As before sending us a question. If your question is not already answered, we are very happy to still answer this individually.
You can also look at questions by subject. There are over 30 categories to choose from…
The results of the REPRIEVE study a couple of years ago were very important.
They led to recommendations for wider use of statins in people living with HIV. This is now included in UK, US and other guidelines, so is technically related to HIV care.
However, although HIV meds are free on the NHS, whether of not the statin is also free might depend on where you are living and how you get your meds.
Some Trusts might include the statin free with your ART meds if you pick these up from the hospital or use a home delivery service.
Most people have the statin prescribed by the GP though.
If this is the case, then unless you are exempt from charges, you are likely to have to pay for these. These costs could be reduced by having 3 or 6 months prescriptions, rather than having to do this every month.
As prescription costs make a big difference for many people, any meds that are directly related to HIV should potentially be included with ART.
Whether of not this will happen nationally is difficult to know.
The situation might also be different depending on which country in the UK you are living.
Thanks for your Q and it is good to check about drug interactions.
It is good that your doctor checked – and they are giving you good advice and treatment.
Depakote does have a lot of potential interactions, including with some HIV meds. However, there are no interactions though with the HIV meds in your combination.
You can also take your meds at the same time as your HIV meds can be taken with or without food.
Thanks for your question – and it hasn’t been asked here before.
I have reported the development of these meds and I haven’t heard this reported before. I also searched the full prescribing information for both meds and neuropathy isn’t mentioned.
This doesn’t mean this hasn’t happened or even hasn’t been reported before, because very rare side effects are often not included in these reports. However, neither of these types of drugs have been linked to neuropathy either, which makes it difficult to see a mechanism for how they could cause this.
What has your doctor said?
The first step would be for your doctor to test for the neuropathy and then look for other reasons this might have developed.
Advanced HIV can also cause neuropathy if you ever had a very low CD4 count, but the symptoms would normally start when the count was still low. Other mkedications can also cause these symptoms.
Depending on how severe your symptoms are, this might also include a referral for pain management.
If your doctor confirms your symptoms and can’t find another cause, switching to a different HIV combination would be the easiest practical next step. If any drug does cause neuropathy, the sooner you switch to an alternative, the sooner this side effect might resolve. This would need to be a switch for a few months though because drug-induced neuropathy sometimes continues for a while before symptoms get easier.
In the UK, your doctor could also contact the MHRA Yellow Card scheme for reporting side effects and ask whether any other similar reports have been made. If your symptoms reverse after switching to a different combination your doctor could also use the Yellow Card scheme to report your case.
Outside the UK, a doctor can also contact the drug manufacturer directly to report any suspected side effect and to find out whether it has been reported before.
I am very sorry that your clinic is closed. This has happened to clinics in lots of countries after the block in US aid.
Lots of people are working hard to open the previous services again. Until this happens are there any other clinics that still provide free ARVs?
You ask about risks to yourself, and also to your partner. Is your partner HIV negative?
Your risk depends on your HIV history.
If you were diagnosed with a high CD4 count (above 350) and have never been ill, then being off-ART might not cause any short-term problem. You might easily go for several months or perhaps much longer without becoming ill.
If your CD4 count ever wen below 200 though or if you were ever seriously ill, then it is more urgent for you to start ARVs again.
It is also important that you ask about the risk to your partner if they are HIV negative.
After stopping ART it usually takes at least a week before viral load becomes detectable. even it this takes a couple of weeks, it is best to assume a week.
After stopping ART please use condoms if your partner is HIV negative.
Then over the next 2 to 12 weeks, viral load can become incredibly high. In some people this can be more than 100,000 copies/mL, or more than 1,000,000 copies/mL.
Unless you are using condoms or your partner is using PrEP this will be a VERY high risk of transmitting HIV.
Although the times will vary for different people, without a recent viral load test it is impossible to talk about individual risks.
Also that you know that your meds protect your partner too.
Please ask your nurse for your actual results. This is because you need to know whether or not you are undetectable or not for your own care.
If for any reason you are not undetectable – or less than 200 – then please email me again and we can talk about options.
Even with a high viral load, most people become undetectable within about 6 months but sometimes this might take a little longer. You have definitely been taking ART for long enough, but knowing the number will show how well it is still working.
Most people also like to know how there CD4 count is doing.
Knowing your CD4 and viral load results are important.
This is a very relevant question because of a very large HIV study called REPRIEVE. Two years ago this study reported that a statin significantly reduced the risk of serious heart disease, even in people at low risk.
This led to UK guidance in 2023 and 2024 that included offering a statin more widely to all people living with HIV. This includes anyone older than 40 and even if they were at a relatively low risk. [1]
The guidance recognised that not everyone would want to do this. Heart disease is linked to many different factors and this needs a holistic approach. Some people prefer to make changes to diet and exercise, or other lifestyle changes. Other risk factors include things like family history and cholesterol levels, which you didn’t mention.
The study results were so important though that they were to make sure that HIV doctors had these discussions. It is good that your doctor did this. Hopefully your doctor also included examples of how a statin would reduce your current risk..
The US study enrolled people whose risk was less than 5% and the study was stopped early because the benefit of the statin became clear earlier than expected.
European HIV guidelines Now also recommend statins more widely for people with HIV. This includes anyone with a SCORE2 between 5% and 10%. This only needs to be higher than 2·5% if older than 50. [2]
Whether or not you decide this is right for you will of course be up to you. But it would be good for the doctor to include how effectively the statins work compared to a very low risk of side effects.
Although in general people living with HIV are at increased risk in general, your doctor is focussed on your individual risk, which at 10% is considered quite high.
Congratulations on doing so well on your medication.
Testing for HIV and starting ART (HIV medication) is the best thing you can do. It means you can stay well and live a long life.
Daily ART reduces HIV to such low levels that it becomes undetectable on a regular blood test. This is called your viral load.
When viral load is less than 200 copies/mL you cannot pass HIV to your boyfriend. This is even if you don’t use condoms. This is called Undetectable = Untransmittable or U=U, click on the link to find out more.
ART will also protect your baby if you decide to have one.
Your boyfriend has not been at risk because you were on ART for three months before you met. Most people become undetectable within three months especially if your meds are TLD.
I am sorry your boyfriend does not want to talk about HIV. Maybe he is scared that he has HIV and that you will think badly of him.
These tips on talking to your boyfriend were written by other women living with HIV:
Find out how much your partner knows about HIV by having a conversation when HIV is on the radio or TV.
Try and talk about U=U, maybe tell him you heard someone else talking about it. Tell him you heard that HIV is not like in the old days.
If you decide to tell your partner, do it in a place where you can leave safely in case he reacts badly.
If you decide not to tell your partner and you have a baby together, it will be very stressful to keep it a secret and have to hide your medication and clinic appointments.
Finally, I want to make sure you are ok. HIV takes a while to get used to, even when you are doing well on meds. It can help to talk with other women living with HIV who have been through the same as you.
Do you have anyone you can talk to, even a friend or family member who is understanding?
You deserve a boyfriend who can learn about HIV and support you.
We get a lot of questions about this and I understand this is difficult and upsetting. Many people report body changes since the early days of HIV treatment over 25 years ago.
Newer HIV meds used today shouldn’t be doing this, or might have a lower risk.
Sometimes the early HIV meds also caused bigger stomachs which made the changes seem worse. So part of the answer might be linked to your treatment history and current meds.
As Tribuss is an early HIV med that includes efavirenz, please talk to your doctor about using a new combination like TLD which includes dolutegravir instead. Changing meds may or may not make a difference to your weight though. Your current meds might be linked to lower weight in your legs but some people also put on weight with the newer meds.
Current HIV meds shouldn’t be causing the same problems, but we still get emails and posts from people saying the same experiences as you are having. This seem more frequent from women, so this might also be a factor.
Modern HIV drugs like dolutegravir and bictegravir (integrase inhibitors) and TAF have been linked to putting on more weight. Some older HIV drugs like efavirenz and TDF have been linked to lower weight. So this might still be an issue. However, switching HIV meds hasn’t showed that weight changes reverse.
This means doctors emphasise looking at moving to a balanced diet and being more active with exercise as a way to reverse weight changes.
What has your doctor or health worker said about this? Please make sure they understand how important this is for you. Please make sure you are weighed and have waist and hip measurements at every visit – and that these are recorded in your notes.
I am sorry that there is not one easy answer to your question.
Unwanted weight gain and the possible link to some HIV meds have been getting a lot of focus over the last few years.
Unfortunately, the different factors that cause this can vary between different people, so approaches to reduce weight afterwards are not clear. Something that works for one person might not work for another and none of the research studies have reported a best approach.
If you are able to access one of the GLP-1 weight loss medicines, these will not interact with HIV meds, but they are also difficult to get.
However, supplements that advertise for weight loss are unlikely to work, and are unlikely to have evidence from good studies.
Please talk to your doctor about your concerns so this can be something that you can get individual advice about this.
Hi Alex, thanks. I am sorry that you have had this experience. The changes in US policy have closed many clinics and it is important that you find out where you can now get care.
Please try contacting other hospitals in the area to see if you can get care there. I am in the UK but Google shows this page that might be useful: https://www.langeberg.gov.za/contact-us.html
Thank you for writing in and letting us post this Q&A online.
I am really sorry that you had to go through this experience but it is very good that arrangements to get treatment were arranged so quickly.
The decision to cancel US funding will affect millions of people and closed thousands of clinics, without even giving anyone notice to make new arrangements.
Although it is better not to take a treatment break, this is an emergency situation. Your health will not be affected by the six days off. Your viral load and CD4 count will still be the same.
Please see this link for more information about what to do if a clinic closes or runs out of meds.
Although i-Base only answers questions and produces resources in English, it is easy to get our information in other languages.
Online translation can give a very good instant translation of any info online.
For example, Google translate covers more than 140 languages.
This works for cut & pasted text, web pages, PDF and even whole websites – all instantly.
The results are not perfect but they are close enough.
Putting in i-base.info website instantly translates every page of the i-Base website as you click each link. Just find the i-Base links you want and work on another screen to show the translations – printing what you need.
For example, if you are a health worker and have a client who is newly diagnosed:
Please note: This info is free to copy and adapt for different settings.
On 20 January 2025, without any notice, the US stopped all international support for global health care.
This forced thousands of HIV clinics to close in over 50 countries. Within a month, some clinics are starting to reopen again. Others will hopefully open soon but this is not certain.
Some clinics and services might stay closed. This means some people need to find another clinic to get meds and services.
If this includes your clinic, we are sorry for this uncertainty and the worry it causes.
Please continue to hope that things will get better.
This might just be difficult in the short-term.
People all over the world are working to fix the situation.
The following information covers four main issues.
HIV prevention: HIV testing, PrEP, condoms, U=U.(link to come)
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.
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 do not try to split pills to take half doses as this is definitely not recommended,
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.
Again, please talk to a doctor first who can talk about your individual HIV history and that of your friend.
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 will be okay for most people living with HIV. If your last CD4 count was higher than 350 you might be okay for several months or even longer.
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.
As with all these questions, it is better for your doctor to talk about your individual risk.
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).
Try to talk to a doctor about your individual risk.
9. What is the risk from stopping ART?
The risk from being off ART while the clinic is closed depends on two things.
How long you are off ART. A shorter time is better.
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.
Try to talk to a doctor about your individual risk.
10. What if HIV made 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.
Try to talk to a doctor about your individual riskPlease t
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. Please use condoms every time now if your partner is HIV negative.
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.
If you can’t get your meds though, the risk to HIV negative partners becomes high again.
After two or three weeks of missing ART, viral load will rebound. It can also rebound to VERY high levels. Sometimes this is more than 1,000,000 copies/mL.
Please think about these issues.
Does your partner(s) know that you are living with HIV?
Is it safe for you to tell them?
Can 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.
Try to talk to a doctor about your individual risk.
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.
Please try to talk to a doctor about your individual risk.
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.
Please try to talk to a doctor about your individual risk.
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.
Please try to talk to a doctor about your individual risk.
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.
Please try to talk to a doctor about your individual risk.
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.
Please try to talk to a doctor about your individual risk.
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.
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.
No, no, no – please do NOT try to split HIV pills – this is very risky.
This is a risky because a half dose will not be strong enough. Also, each of the drugs in the combination might not be evenly distributed in the pill.
However, because you are undetectable, there might be a way to make your meds last longer.
If you are taking a single pill with three meds – either TLD or TLE – then you might be able to save two pills every week. This is because the FOTO studies (Five-On, Two-Off) showed that taking five pills every week kept viral load undetectable.
Also, thank you for posting about your situation. I am really sorry that you are in this situation. Many people are working hard to make sure HIV treatment continues to be available.
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.
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.
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,
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.
A lot of questions are already answered online.