Your HIV Journey
Treatment is effective, simple for most people and improving all the time. Learn how it works, what the options are and what taking it daily involves.
“I live in a rural area and didn’t have access to any local support. The online peer support changed everything. I finally found people who understood — and I didn’t have to travel anywhere to find them.” - Online peer support participant
Modern treatment for HIV, otherwise known as Antiretroviral Therapy (ART) is extremely effective, well tolerated and in most cases very convenient to take. For most people treatment consists of taking one, possibly two tablets once a day.
There have been incredible advances in the development of newer drugs which are better tolerated than older drug options and are dosed at lower levels which means there is less impact on the body.
Treatment for HIV can seem quite complicated at first, so we’ve put together easy to understand, practical information which you can talk through with your doctor so you feel involved in your treatment plan and discuss the options that might suit you best, from medical and practical perspectives.
Treatment for HIV combines 2 or 3 different drugs which stop two different stages in the HIV lifecycle. This reduces the amount of virus in the body (described as viral load) which becomes so low that tests used to measure viral load cannot detect HIV in the blood. This is called undetectable viral load or to use the medical term, viral suppression.
Within days of starting treatment, the drugs get to work, and viral load is significantly reduced. This takes pressure off the immune system, which starts to recover and get on with the day job of protecting the body from harmful infections.
There are different families or classes of drugs that work at different points within the HIV life cycle to prevent new copies of HIV being made. The most frequently used classes of drugs are detailed below:
Nucleoside Reverse Transcriptase Inhibitors (NRTI’s) block the HIV enzyme reverse transcriptase which copies (transcribes) the single strand of HIV genetic material (RNA) into a double strand of genetic material DNA, sometimes referred to as proviral DNA. The transcription process enables HIV to use CD4 cell processes to make copies of itself. Two drugs from the NRTI group are combined together to form what is often called the backbone regimen, comprising of the following paired drugs:
Emtricitabine / tenofovirDF – preferred option for people starting treatment.
Emtricitabine / tenofovirAF – preferred option for people starting treatment.
Lamivudine / Abacavir** – not recommended for people starting treatment
**no longer a recommended NRTI by British HIV Association (BHIVA)
Integrase Transfer Strand Inhibitors (INSTI’s) prevent the HIV proviral DNA being transported and inserted into human DNA located in the nucleus of CD4 cells. Once the proviral DNA is inserted into the human DNA the cell processes are instructed to produce and assemble proteins needed to create large amounts of virus, which go on to infect other CD4 cells. The British HIV Association (BHIVA) recommends that INSTI’s are included as part of first line treatment together with a suitable NRTI backbone regimen. The most frequently used INSTI’s in the UK include: Dolutegravir, Bictegravir and occasionally Raltegravir
Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTI’s) block the HIV reverse transcriptase enzyme but in a different way to NRTI’s. NNRTI’s can be used as an alternative to integrase inhibitors together with a suitable NRTI backbone regimen to prevent new copies of HIV being created. Examples of NNRTI’s most frequently used for treatment in the UK include: Doravirine, Rilpivirine and in some specific instances Efavirenz.
Protease Inhibitors (PI’s) prevent the HIV proteins produced by the CD4 cell being cut (cleaved) into functional components needed to produce more virus. Protease inhibitors get to work when newly created HIV proteins are transported to the CD4 cell surface membrane. They continue to work once immature HIV particles are released from the CD4 cell, a process known as budding. Without the essential functional viral components HIV is unable to fully mature and go on to infect other CD4 cells. Protease inhibitors are not frequently used as they require the use of a boosting agent which can interact with other medications. The most commonly used protease inhibitor and boosting agents are:
Darunavir boosted with low dose ritonavir (also in the PI class of drugs).
Darunavir boosted with cobicistat, which are combined into the single pill regimens Symtuza and Rezolsta.
There are two drugs that are currently licenced in the UK which are used in combination as injectable treatment, which can replace daily HIV medication in tablet form.
Long acting rilpivirine (part of the NNRTI family of drugs).
Long acting cabotegravir (part of the INSTI family of drugs).
Injectable treatment is given every 2 months instead of taking daily medication. It has been proven to be as effective as daily medication at maintaining undetectable viral load but isn’t suitable for everyone. Injectable treatment requires a significant commitment to attend clinic every 2 months at around the same ‘target date’ to ensure they remain effective.
There are other classes of drugs that not frequently used in standard treatment regimens and are reserved for those with limited treatment options due to the development of drug resistant virus.
Entry inhibitors prevent HIV entering the CD4 cell which means HIV cannot hijack the cell processes create large quantities of HIV. Entry inhibitors are rarely used in standard treatment combinations but do have important uses in specific circumstances. The entry inhibitor maraviroc blocks one of the co-receptors (CCR5) located on the surface of the CD4 cell that HIV uses to enter the cell.
Ibalizumab is a monoclonal antibody administered by infusion rather than taken in tablet form. It prevents HIV entering the CD4 cell in a different way to maraviroc and is therefore useful in situations where maraviroc cannot be used. Ibalizumab is not currently routinely available as a treatment option in the UK. It can be made available for people who have very limited treatment options.
Fostemsavir is not routinely available as a treatment option in the UK but is available through an expanded access programme for people who have very limited treatment options. It is available in pill form and is used alongside other drugs including ibalizumab to construct an effective treatment regimen for people who have HIV that no longer responds to commonly used drugs. This is often referred to as multidrug resistance.
Capsid inhibitors – prevent the development of the outer protective shell (capsid) of newly assembled components needed to create new copies of HIV. This is a novel and approach targeting one of the final stages in the HIV lifecycle and prevents new virus components remaining viable and therefore unable to infect more CD4 cells.
Lenacapavir is an injectable treatment option but not yet approved for use in UK. For initial treatment there is a lead in tablet dosing period before moving onto the 6 monthly injectable phase. Lenacapavir must be used alongside other active HIV drugs to achieve undetectable viral load in people where their HIV is resistant to many of the more commonly used drugs (multidrug resistant virus).
For the majority of newly diagnosed people starting antiretroviral therapy as soon as possible after diagnosis is recommended. It is important that you feel ready to start treatment and where you don’t feel ready talk to your doctor to explain your concerns. Talking to someone else living with HIV (peer support) can provide reassurance by then sharing their experiences of starting treatment. Your clinic team should ensure you talk to a peer support worker at the earliest opportunity.
In some circumstances where someone is unwell due to advanced HIV antiretroviral therapy is delayed for a short period of time. This allows further investigations which determine a wider treatment plan to ensure any serious infections are treated prior to starting HIV treatment.
The primary aim of starting treatment is to reduce viral load in the blood and other bodily fluids to levels that are so low the standard viral load tests cannot detect HIV in the blood. Once HIV is undetectable (suppressed) the immune system recovers and this normalises the immune function which protects the body from serious infections causing illness. This enables people living with HIV to remain healthy long lived and productive lives.
An important secondary outcome of starting treatment is that when viral load reached undetectable levels HIV cannot be passed to sexual partners and babies born to mother living with HIV are prevented from acquiring the virus.
Single pill regimens include:
Two pill regimens include:
Darunavir boosted with low dose ritonavir (also in the PI class of drugs).
Darunavir boosted with cobicistat, which are combined into the single pill regimens Symtuza and Rezolsta.
In recent years treatment options have become more convenient to take often a single tablet regimen or a two tablet regimen. The British HIV Association (BHIVA) recommend the following preferred options when starting treatment:
Your doctor should clearly explain the clinical reasons for the selection of your treatment regimen. It is important you are involved in and given the necessary information where you can consider the practical implications of taking daily treatment which fits well with your daily routines.
Things to consider are frequent travel, shared accommodation (privacy), shift work, GP prescribed medications, recreational substance use, nutritional supplements such as vitamins, minerals, protein shakes, creating supplements.
Other treatment options may be recommended in certain circumstances (pregnancy, treatment for other health conditions as examples) to ensure your treatment is optimised and for your individual circumstances.
Once the treatment option has been agreed a specialist pharmacist will usually explain how to take the medication, outline any interactions to be aware of and explain potential side effects and what to do if these persist. It is usual that one or two months’ supply will be provided.
It may feel daunting to start taking treatment, particularly if you’re not used to taking daily medications for other health conditions. The key thing to consider along with the recommendations made by your clinic team is how best to fit taking treatment into your daily routine.
Your doctor or pharmacist talk about the importance of taking your treatment at a consistent time during the day. Taking treatment in the morning can help to reduce any potential side effects that include changes in sleep pattern and insomnia. This is particularly the case where you already struggle with sleep. Talk to your clinic team about any sleep problems you experience.
Choose a time that fits in with your routine for the majority of the time. This is the best way to achieve consistency which becomes habit. Don’t be overly concerned about changes in daily routine on days off where you may not wake up at the same time as a workday.
Aim to take your treatment as close as possible to your chosen ‘ideal’ time as this ensures the drugs remain at effective levels which is important to ensure viral load becomes and stays undetectable. There will be occasions when you are late taking your treatment or forget completely. The important thing here is to take your treatment as soon as you remember or if it is more than 12-hours beyond your chosen time take your next dose at the usual time the next day.
If you are struggling to take your medication consistently talk to your clinic team or peer support worker who can provide practical suggestions and solutions to help get you back on track. Using medication tracker apps or alarm on a smartphone are very effective reminders. Other people prefer to use a pill box which acts as a visual reminder. The important thing is that whatever the method it works for you.
Modern HIV drugs are usually well tolerated by the majority of people, and any noticeable side effects are short lived. There can be occasions where troublesome side effects continue beyond the first few days of starting. It’s important to talk to your clinic team about any side effects you experience. Where side effects persist, it is possible to make some changes to your combination to help resolve any problems you experience. Here are some points to consider to help manage short term side effects:
There can be interactions between HIV medications and other prescription medications, over the counter medicines and some herbal remedies. It’s important to check with a pharmacist or clinic team if there are any particular interactions you should be aware of. You can check for interactions online using the HIV Drug Interaction Checker, a trusted resource used by HIV clinics and pharmacists. It is also available as an app on Google Play and the Apple App Store. If you are prescribed any new medicines or start taking any over the counter or herbal remedies, contact your clinic doctor or pharmacist for advice. If you are unsure, it is always best to check.
Some of the most important interactions to be aware of are outlined below:
Supplements that contain minerals such as aluminium, calcium, magnesium, zinc and iron can reduce the effectiveness of drugs such as dolutegravir, bictegravir (component of Biktarvy) raltegravir and older single tablet combinations such as Genvoya and Stribild. The recommendation to avoid any interactions are as follows:
After taking your HIV medication allow 2 hours to pass before taking any supplements as described above.
OR
After taking your supplement allow 6 hours to pass before taking your HIV medication.
As a simple alternative take your HIV medication in the morning, and take any supplements at night, or the other way around. If this is not always possible talk to your clinic doctor about switching away from a combination that contains integrase inhibitors.
Boosting agents cobicistat and ritonavir, used in combination with darunavir or atazanavir together with older less commonly used single tablet combinations such as Genvoya and Stribild can raise levels of other prescription drugs, over the counter medicines and recreational substances to dangerous levels or results in significant side effects.
Of particular concern are interactions with steroid medications, either given by injection, used in asthma inhalers or steroid containing eye drops. Topical creams that contain a steroid are generally OK, but it’s always good to check. Some statins may require a dose adjustment when used with combinations that include a boosting agent. It is very helpful to let your GP know the details of your HIV treatment, so he or she can check before they prescribe you a particular drug.
Stomach Acid lowering medications such as omeprazole, lansoprazole, and zantac can reduce the effectiveness of HIV treatment combinations that contain rilpivirine in tablet form and older drugs such as atazanavir. Over the counter medicines that reduce stomach acid (rennie, gavison, tums, alka zelster) should be used with caution if at all. If it is not possible to avoid the use of acid lowering medications talk to your clinic doctor about switching to a different treatment combination.
Herbal remedies, notably St John’s Wort, can reduce the effectiveness of several drugs used to treat HIV. There are other herbal remedies that can have a similar effect, so it’s very important to check with a pharmacist or a member of your clinic team prior to taking any herbal remedies.
Many people who take a variety of prescription drugs will be used to travelling and often don’t think twice about carrying medication either in hand luggage or luggage placed in the hold. HIV medications are no different, but it’s natural for some people will have concerns relating to privacy or where some countries have entry restrictions for people living with HIV. Travelling to countries in a different time zones can be a source of anxiety and taking a practical approach to time adherence helps with this and can prevent missed or double doses.
Here are some points to consider:
Travel restrictions relating to HIV apply in some countries so it’s worth checking Positive Destinations website which explains any restrictions for a particular country.
Good practice when travelling abroad is to keep your HIV medications in their original containers and to obtain a generic letter, either from your GP or clinic. The letter only needs to explain your medication is for personal use and needs to be taken every day. There is no requirement for any information about the condition your medication is prescribed for. Concealing medications in vitamin bottles or other containers isn’t advisable as this may raise suspicion by customs officials in some countries and could result in things becoming more complex and difficult.
It is advisable to carry your medication in your hand luggage rather than in the hold luggage as should this go missing there may be a period where you can’t take your medication. It’s useful to take a small back-up supply just in case your return home is delayed for some reason. Should your medication go missing it is sometimes possible to obtain a replacement in the country where you are traveling to, particularly within Europe. It’s always worth checking, although there is likely to be a charge, which may not be refundable. If it’s not possible to get replacement medication try to contact your clinic and ask for further advice.
Time Zone changes can be a concern when travelling in and out of different time zones. To avoid confusion and more importantly missed doses it is advisable to take your medication at the same local time as you would when at home rather than make an adjustment. The only exception to this where you would miss a dose within a 24-hour period. If in doubt or you have any concerns its always best to check with your clinic team prior to your travel date.
Linked to the point above is the change in time where clocks go forward or back here in the UK. There is no need to make an adjustment in the time you take your medication, just keep it to the same time.
Travel insurance can be obtained from non-specialist insurance companies, usually without having to pay a significant premium. Some insurers will ask information about your treatment, your latest CD4 count result, and if you’re stable and taking treatment.
Travel vaccinations are generally not problematic for people living with HIV as most don’t contain live components. It’s always worth checking with your clinic doctor several weeks before you are due to travel and then arranging an appointment with your GP to have the necessary vaccinations done as advised by your clinic doctor.
Occasionally your clinic doctor or nurse may suggest a change in your treatment to ensure it remains well tolerated and effective. You can also talk to your doctor about changing your treatment if you are experiencing ongoing side effects or would like to move to a single tablet combination or injectable treatment.
It is important you are involved in any treatment change decisions and feel able to discuss any concerns you may have about switching one or more components of your existing treatment combination. Any proposed changes in treatment are usually discussed at a treatment multi-disciplinary team meeting or virtual treatment clinic, particularly where drug resistance or treatment failure is suspected. This is good practice and ensures the most suitable and effective treatment is prescribed.
Detailed below are some of the reasons you or your doctor may want to consider a change to your treatment.
Ongoing side effects are probably one of the main reasons people switch treatment. There are always options to consider which can help reduce a particular side effect. Ideally, it’s better to switch out one drug at a time (where possible), rather than to switch to a completely new combination, which may not be helpful in identifying which drug component might be causing a particular side effect.
Changes in blood test results over time, such as raised liver enzymes, changes in kidney function, cholesterol levels are examples where your doctor may wish to review your medication and suggest a change in one or more components within your combination. This is usually nothing to be concerned about, but important that you understand why the change has been suggested.
Increase in viral load (above 50 copies) may also necessitate a change in one of more of the components in your combination. Sustained, detectable viral load may be a sign that your combination may not be working effectively. This requires further investigation, a review of previous resistance test results, and where possible, a new resistance test completed to provide the detailed information to identify which drug component may not be fully effective to keep the viral load to undetectable levels. Whilst this can be somewhat unsettling, it’s important that the drugs in your combination are fully effective as this is the overall goal of treatment for HIV.
Treatment simplification to reduce the number of individual tablets taken is another valid reason where a change in treatment may be desirable, or to reduce the number of drugs that make up your combination, this can also include a reduction in the number of drugs your combination contains.
Changes to other prescription medicines or health condition may require a review and changes made to the treatment for HIV. Sometimes this can be for a fixed period of time (during pregnancy, treatment of other conditions) or a more permanent change in treatment. As with any changes in treatment the reason for the change should be clearly explained and your agreement sought prior to any change being made.
Injectable HIV treatment is a long-acting alternative to taking daily tablets which became routinely available in the UK towards the end of 2021. It is not suitable for everyone and requires authorisation on a case by case basis by a team of experienced doctors, pharmacists and nurses, often referred to as a Multi-Disciplinary Team (MDT). It can be a very good option for people who find daily tablets difficult because of privacy concerns, swallowing problems, stigma, or difficulties keeping to a daily routine.
Injectable treatment comprises of 2 long-acting drugs cabotegravir and rilpivirine which are given as 2 separate injections into the muscle in the buttock area. The injections are given every 2 months by your clinic team. Some people experience short term pain at the injection site 24 to 48 hours after the injection is given. The majority of people who have switched to injectable treatment have found it transformational and improved their quality of life.
It is a treatment option that replaces daily tablets for some people. In the UK it uses two long-acting medicines, cabotegravir and rilpivirine, given at the same time as injections.
It is mainly for people who already have an undetectable viral load on treatment. Your clinic will also check for any past resistance, previous treatment failure, hepatitis B treatment needs, pregnancy plans, and whether you can attend appointments reliably.
For people who meet the criteria and receive injections on time, it has been shown to be as effective as oral treatment at keeping viral load undetectable. A small number of people can still experience viral rebound, so regular monitoring is important.
It is given in clinic as two injections into the buttock muscle area. After the starting phase, treatment is usually given every 2 months.
The most common side effect is pain, swelling, or tenderness where the injections are given. This is usually short lived and often improves after the first few doses.
It is not usually recommended during pregnancy or when planning pregnancy because there is limited information about its use in this setting.
Usually not on its own. If you need tenofovir as part of treatment for hepatitis B, you will still need tablet treatment for hepatitis B because cabotegravir and rilpivirine do not treat hepatitis B.
Yes. You will still need regular clinic reviews and viral load blood tests, especially after switching, to make sure the treatment continues to work well.
It is important not to miss or delay injections. If an appointment needs to change, contact your clinic as soon as possible so they can arrange the safest plan, which may sometimes include temporary tablets.