Questions to ask your doctor before starting treatment

Does HIV treatment work?

Yes! Currently available treatment cannot cure HIV. However, if taken properly, it reduces the amount of virus in your blood to very low levels, called an undetectable viral load. This allows your immune system to avoid damage, or to recover, and stay strong, meaning you have a very low risk of becoming ill because of HIV.

Thanks to HIV treatment, the life expectancy of many people with HIV in the UK is now normal. You can find out more in the section How long will I live? 

If you are taking HIV treatment and have an undetectable viral load, the risk of you transmitting HIV to others is also very low. There’s more information in the section Undetectable viral load and infectiousness.

What does the drug look like?

If you are trying to decide what medication to take, it may be useful to see the tablets you will have to take. Some people have more difficulty swallowing large pills than others, and if you think the tablets are very large this may cause you difficulties taking them in the future. Some drugs can be prescribed as two smaller tablets, instead of one big tablet, or even as a liquid instead.

NAM’s booklet Anti-HIV drugs and the online tool My drugs chart include pictures of all the drugs and details of the doses, and brief answers to all of the following questions for each drug currently prescribed. The booklet is available from HIV clinics, or by emailing info@nam.org.uk, telephone 020 7837 6988.

How and when do I need to take it?

Most HIV treatment is now taken once or twice a day. Treatment consisting of just one pill once a day is an option for some people. For more information on taking anti-HIV drugs, see the section on Taking your HIV treatment – adherence.

What side-effects might I experience?

Most drugs will have side-effects, especially during the first few weeks of treatment. If you know what to expect you may find them easier to deal with. If you think that you will find a particular type of side-effect particularly bothersome, you may choose to try to avoid it. Each drug is associated with different side-effects, but the most common early side-effects tend to be:

  • nausea
  • headache
  • rash
  • vomiting
  • diarrhoea
  • fatigue.

Other side-effects may emerge later or may only show up on blood tests. These can include raised lipids (blood fats, such as cholesterol) or bone problems. Your doctor may recommend avoiding drugs with particular side-effects if you may be at greater risk of having health problems as a result.

Many other side-effects may appear in very small numbers of people. Anti-HIV drugs are only tested in a few thousand people before being licensed for widespread use – this means there is a chance that very rare side-effects will only become apparent when tens of thousands of people have taken the drug.

For more information see the section on Side-effects.

When are the side-effects likely to happen?

Most drug side-effects happen in the first few weeks of treatment as the body adjusts to processing the drug. After a few weeks they often begin to get better. Many people report considerable fatigue during the first months of HIV treatment, but it is not clear why this is so.

What can I do to relieve any side-effects I experience?

It is often possible to relieve side-effects by taking other medication that will not interfere with your HIV therapy. For example, your doctor can prescribe anti-sickness drugs and anti-diarrhoea drugs, and painkillers can be used to relieve headaches. Some rashes can be relieved by antihistamines or steroids, and taking the drugs with food (if recommended) may reduce sickness. However, nothing has yet been discovered to combat the fatigue that may accompany the early stages of a new antiretroviral regimen, so the only remedy for this is to rest until your energy returns. If possible, it can be helpful to have some time off work when you start or change HIV treatment, in case you experience side-effects.

Is it okay to stop treatment if I can't stand the side-effects, or want a break?

It is very important to consult your doctor before making any changes, or stopping your treatment. You should bear in mind that stopping a drug for more than a few days may mean that you will experience the same side-effects all over again if you resume treatment. Similarly, any gains made in terms of lowering your viral load or raising your CD4 count may be lost quickly while you are off treatment.

Also, if you miss doses, reduce the dose, or – in some cases – stop treatment altogether, you are likely to increase your risk of developing resistance to one or more of the drugs you are taking, and even potential cross-resistance to related drugs that you have not yet taken. However, this varies according to the drugs you are taking. Some drugs leave the body more slowly than others, which is another reason you need to speak to your doctor before stopping. You can find out more in the section on Why taking your drugs properly is important.

Structured treatment interruptions (the medical name for treatment breaks) have been looked at in clinical trials. However, it’s been shown that any potential benefits are outweighed by the risks. Therefore, interrupting your treatment is not recommended.

What can I do if I miss a dose or take too much?

If you miss a single dose by a few hours you should take the missed dose as soon as you can and take the next dose at the normal time. However, if you have missed the dose completely, and only realise this when you come to take the next dose, there is no additional benefit in taking a double dose.

Missed doses are problematic because they lead to falls in drug levels. In turn, this can encourage the development of resistance. Missing doses regularly (for example, every weekend) will probably encourage the development of resistance. On the other hand, the occasional missed dose may not cause too many problems, but remember taking less than 95% of your treatment increases the risk of resistance. The best results are seen in people who take all, or nearly all, of their doses at the right time in the right way.

For more information, and some tips on taking yoiur treatment at the right times, see the section on Taking your HIV treatment – adherence.

Will anti-HIV drugs interact with other drugs I take?

Anti-HIV drugs, particularly protease inhibitors, interact with many other drugs including prescription drugs, over-the-counter drugs, recreational drugs and herbal preparations. Drug interactions may cause serious side-effects. Furthermore, interactions may mean that one or more of your medicines doesn't work properly.

Your doctor and HIV pharmacist should ask you about any other medicines or other drugs you take so you can avoid any interactions.

HIV drugs can interact with some common over-the-counter medicines, particularly some anti-indigestion remedies and antihistamines. Some anti-HIV drugs also interact with treatments for erectile dysfunction like Viagra and Cialis.

The herbal anti-depressant St John's wort interacts with all the protease inhibitors and NNRTIs. Other herbal remedies have important interactions with anti-HIV drugs too, so it makes good sense to tell your HIV pharmacist if you are taking or planning to take such treatment.

The interaction between anti-HIV drugs and recreational drugs has not been well studied, but it is known that such interactions can occur. It is therefore recommended that you should use recreational drugs with extreme caution is you are taking HIV treatment. Once again, it makes good sense to talk to your HIV doctor about this issue.

Do I need to take the drugs on a full or empty stomach?

In many cases, it doesn’t matter whether you take your anti-HIV drugs with or without food, although sometimes taking them with food can help you absorb the drug or reduce side-effects. However, the absorption of some drugs can be affected by the presence or absence of food in the stomach. Your HIV doctor or pharmacist will tell you if a drug needs to be taken with or without food. If you find taking medicines without food a problem, it's a good idea to mention this to your doctor so you can find a treatment that suits you best.

If you have to take your HIV treatment with food, it’s useful to know that it’s usually not necessary to eat a full meal. A snack, such as a bowl of cereal, is often sufficient. Rilpivirine (Edurant, also in Eviplera) is the exception and must be taken with a meal of at least 390 kCal. Ask your doctor, pharmacist or another member of your clinic team about how much food you need to take with your anti-HIV drugs.

Are there any foods I should avoid?

You should be given information about any food restrictions when you are first prescribed a new treatment. In most cases, restrictions on food relate more to whether you should take drugs on a full stomach or not rather than any foods you should avoid altogether.

If you are on a treatment combination that includes efavirenz (Sustiva, also in the combination pill Atripla), avoid taking it with a high-fat meal as this will increase the level of the drug in your body and can increase the side-effects.

Do I need to think about taking time off work while my body gets used to these drugs?

Although many people find that they are able to continue as normal when they start HIV treatment, others find that they need some time off work to adjust. So if you have the option, it might be a good idea to start HIV treatment when your commitments are such that you can take some time off.

Do these drugs need to be kept in the fridge or in a special container?

All drugs should be stored in a cool, dry place, out of direct sunlight. Some drugs may deteriorate in hot conditions and so require refrigeration. Other drugs may be particularly sensitive to damp conditions and need to be kept in a special container. You’ll be told of any special requirements when you’re prescribed a new drug.

Can I go on holiday?

Of course! Make sure that you've got enough medication with you for your trip. If you’ve been unwell because of HIV or any other health problem, it's a good idea to be sure that you're feeling well enough to travel.

It makes good sense to plan your travel. Some countries don't allow people with HIV to enter, or it is more complicated to do so. Carrying medication can alert a customs officer that you are HIV positive. Even if having HIV is not a problem for entry to a country, you might be asked about your medication. Having a letter from your doctor naming the medication andstating that you need to have your medicine with you at all times can be helpful in these situations. The letter need not mention HIV.

Ritonavir (Norvir) and saquinavir (Invirase) may deteriorate because of the heat, and indinavir (Crixivan, now rarely used) may deteriorate because of humidity. Be sure to keep indinavir capsules in a dry place, and keep them in the original container with the dessicant supplied, as far as possible.

Alterations in time zones and the eating schedules on long-haul flights may be more problematic when trying to stick to your treatment schedule. People who work on airlines, for example, tend to keep to the time zone of their home country wherever they are working, but this is more difficult for people who are travelling somewhere for several days or weeks. Although airlines recommend that you switch into the time zone of your destination as soon as the flight begins (in order to combat jet lag), this may be confusing if you are trying to stick to a schedule. Eight- or twelve-hour changes in time zones are likely to be relatively easy to work with; shorter or longer adjustments (from Europe to the Middle East, or Latin America, or the east coast of the United States, India, Australia and the Pacific) may be more problematic.

If you are gone for fewer than five days, it will probably work out easier to stick to home time, but if you are away for longer, try to tailor your dosing times to the time zone of your destination as quickly as possible without missing doses (remember that with most drugs you have a couple of hours leeway either side of the twelve-hour or eight-hour intervals at which you are meant to take them).

For more information, see the sections on  Taking your HIV treatment – adherence  and Travel .

Can I drive a car or operate machinery while taking these drugs?

If any medication is causing drowsiness, dizziness, loss of concentration or fatigue, you should be very careful about driving or operating machinery. These have all been reported as early side-effects of some anti-HIV drugs.You will probably find these side-effects improve after the first few weeks of starting treatment, and you can begin to drive or operate machinery again after a short time.

How can I get further information about this treatment?

Your HIV doctor and HIV pharmacist should be able to answer any questions you have about your HIV treatment.

Your hospital's pharmacy may also have a special advice line that you can telephone for further information. Often this is available when the clinic or pharmacy is closed.

There is a lot of information about HIV treatment, and the full range of anti-HIV drugs, on NAM's website, www.aidsmap.com.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.