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Questions to ask your doctor before starting treatment
   Last updated: 06.06.06
What's in the name of a drug?
All medications have at least two names: a generic one, such as zidovudine, and a trade name, such as Retrovir, which is used to market the drug and which appears prominently on the packaging, and sometimes on the capsule or tablet itself. Some are also referred to using an abbreviation of their chemical name, e.g. AZT. It is useful to be familiar with all of these names

What does it 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.

The free booklet called Anti-HIV Drugs produced by NAM includes pictures of all the drugs and details of the doses, and brief answers to all of the following questions for each drug currently prescribed.

How and when do I need to take it?
Regimens vary from once to four or more times a day, and you may be keen to minimise the number of times you have to take medication each day. Once- or twice-daily dosing is generally found easier to live with than more frequent dosing. For more information on taking anti-HIV drugs see the chapter 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, or you may decide that you will find a particular type of side-effect particularly bothersome, and would therefore prefer 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 and may only show up on blood tests, for example:
  • tingling in the hands and feet leading to eventual nerve damage (peripheral neuropathy)

  • liver toxicities

  • neutropenia (low levels of white blood cells needed to fight infections)

  • anaemia (low levels of oxygen-bearing red blood cells, leading to tiredness)

  • lipodystrophy (changes in body fat) - either fat loss from the face and limbs or fat accumulation in the abdomen and breasts.


Many other side-effects may appear in very small numbers of people. For example, a small number of people who have taken protease inhibitors have experienced the onset of diabetes. Because anti-HIV drugs are only tested in a few thousand people before being licensed for widespread use, 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 chapter 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 begin to get better. Many people report considerable fatigue during the first months of treatment, but it is not clear why this is so.

For more information, see the chapter Side-effects .

What can I do to relieve any side-effects I experience?
It is often possible to relieve side-effects by taking other medication which will not interfere with your anti-HIV therapy. For example, your doctor can prescribe anti-nausea drugs and anti-diarrhoea drugs, and painkillers can be used to relieve headaches. Some rashes can be relieved by antihistamines or perhaps steroids, and taking the drugs with food (if recommended) may reduce nausea. However, nothing has yet been discovered to combat the fatigue that may accompany the early stages of a new anti-retroviral regimen, so the only remedy for this is to rest until your energy returns.

Another option with some drugs is to increase the dose gradually.

Is it okay to stop treatment if I can't stand the side-effects, or want a break?
It is best to consult with your doctor before making any changes. 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 whilst you are off treatment.

If you miss doses or reduce the dose rather than stopping treatment altogether, you are likely to increase your risk of developing resistance to one or more of the drugs you are taking (and, potentially, 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 to speak to your doctor beforehand.

Structured treatment interruptions, (the scientific name for treatment breaks) are being investigated by researchers as a means of controlling HIV. However, whether their benefits may outweigh their risks is not yet established. In the meantime, experts are agreed that it is not safe for individuals to experiment with their treatment in this way, unless it is part of a clinical trial.

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.

You may wish to experiment before you start an antiretroviral regimen to see that you can manage it. Try and make it as realistic as possible. If you have several different sorts of low dose vitamin tablets this will be a harmless way of modeling the practice of taking three different drugs at set times each day. Try this for a month and see how you get on. This is a painless way of testing whether you can adhere to a regimen successfully. If you can't manage the regimen you've tested in this way, you may be best advised to look for another one which suits you better.

If you've taken other medication for non-HIV related problems before, don't assume that these will predict your likely adherence to combination therapy. Any medication which prevents the immediate recurrence of a condition is likely to be taken more consistently than one where the effect of non-compliance is only visible through laboratory tests.

For more information see the chapter 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 don't work properly.


Do I need to take the drugs on a full or empty stomach?
The absorption of some drugs can be seriously affected by the presence of absence of food in the stomach. For these drugs you will be instructed to take your medication with or without food as necessary.


Are there any foods I should avoid?
You should be given detailed instructions about what you should and shouldn't eat when taking this medication. Fortunately, the restrictions on food relate more to whether you should take drugs on a full stomach or not rather than whether you should avoid food.



Do I need to be careful about drinking or recreational drug use on this treatment?
Very few anti-HIV drugs are affected by alcohol, although the pancreatitis risk of some drugs, such as ddI, may be increased if you drink heavily, in the view of some doctors. Pancreatitis and peripheral neuropathy are in any case associated with heavy alcohol consumption. Alcohol may also affect your liver's capacity to process antiretroviral drugs, and may increase nausea.

For information about anti-HIV drugs and recreational drugs see the chapter Daily health issues .



What do I do if I think I am pregnant or want to become pregnant?
If you are already on treatment, any potential adverse effects of drugs on your baby are most likely to occur during the first 14 weeks of pregancy. HIV transmission is more likely to occur during delivery, but transmission has been shown to occur during the first 14 weeks of pregancy, so the option of stopping treatment needs to be balanced against the potential risk of a rebound in viral load if you come off treatment. Increased viral load increases the risk of HIV transmission from mother-to-child.

If you want to conceive you should discuss the relative risks of coming off treatment or conceiving whilst on treatment with your doctor.

For more information see Mother-to-baby transmission of HIV .

Do I need to think about taking time off work while my body gets used to these drugs?
Some people find that it may take several weeks before they feel well enough to go back to work, or before they can manage without childcare assistance, when they begin anti-HIV treatment.

Do these drugs need to be kept in the fridge or in a special container?
Some drugs may deteriorate in hot conditions and so may require refrigeration, or to be stored in a cool place, out of direct sunlight. Other drugs may be affected by damp conditions, e.g. indinavir. This drug must be kept in a container with a special dessicant (a susbtance which draws moisture out of the air) and shouldn't be kept in a box with other pills, or in the fridge. Your doctor or pharmacist will be able to provide advice on this.

Can I take them on holiday?
The major difficulty with taking these drugs on holiday is the number of containers you may have to carry and the attention this may draw to your HIV-positive status. However, none of the packaging for these drugs reveals that they are prescribed for the treatment of HIV infection, and a letter from your doctor which says that you are prescribed these specific drugs should provide sufficient cover for you. Difficulty may come for people who wish to enter the United States however, where entry for HIV-positive people is restricted.

If you are going to a hot climate lopinavir, ritonavir and saquinavir may deteriorate because of the heat, and indinavir 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 (and size of portions!) on long-haul flights may be more problematic. People who work on airlines 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, Latin America, the East Coast of the United States, India, Australia and the Pacific) may be more problematic.

If you are gone for less 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 the drugs).

For more information see the chapters Adherence and Travel .

Should 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 antiretroviral drugs.

How can I get further information about this treatment if I want it?
A variety of sources can provide you with information about the treatment prescribed to you, but at the very least your doctor should provide you with a clear explanation of any of the issues discussed in this section, supported by written information to take home. Some drug companies have produced information booklets about their drugs which may answer some of these questions, but if your doctor is not available, the first port of call may be your HIV pharmacist, who should know the answers to all the questions discussed in this section. Your doctor should provide you with information on where to go if you have any questions on your treatment.