Questions to ask your doctor before starting treatment
What's in the name of a drug?
All medications have at least two names: a generic one, such as lamivudine, and a trade name, such as Epivir, 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. 3TC. 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. It is available from HIV clinics, or by emailing firstname.lastname@example.org, telephone 020 7840 0050.
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 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:
Other side-effects may emerge later or may only show up on blood tests.
Many other side-effects may appear in very small numbers of people. For example, a small number of people who have anti-HIV drugs have developed bone problems. 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 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 begin to get better. Many people report considerable fatigue during the first months of 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.
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 you need to speak to your doctor before stopping.
Structured treatment interruptions (the scientific name for treatment breaks) have been looked at in clinical trials. The general consensus is that their risks outweigh any potential benefits.
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.
You may wish to experiment before you start HIV treatment 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 modelling 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 that 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 HIV treatment. Any medication which prevents the immediate recurrence of a condition is likely to be taken more consistently than one where the effect of not taking your HIV treatment is only visible through blood tests.
For more information see the section on 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.
Your doctor and HIV pharmacist should ask you about any other medicines so you can avoid any interactions.
HIV drugs can interact with some common over-the-counter medicines, particularly some statins and antihistamines. Some 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 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?
The absorption of some drugs can be seriously affected by the presence of 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 then it's a good idea to mention this to your doctor so you can find a treatment that suits you best.
Do I need to be careful about drinking or recreational drug use on this treatment?
Very few anti-HIV drugs are affected by alcohol. The pancreatitis risk of some drugs, such as ddI (Videx), may be increased if you drink heavily, in the view of some doctors. Pancreatitis and peripheral neuropathy, rare side-effects of anti-HIV drugs, are in any case associated with heavy alcohol consumption. Alcohol may also affect your liver's capacity to process anti-HIV drugs, and may increase nausea.
For information about anti-HIV drugs and recreational drugs see the section on Recreational drug use.
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 pregnancy. HIV transmission is more likely to occur during delivery, but transmission has been shown to occur during the first 14 weeks of pregnancy, 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 the child.
Your wish to become pregnant can had an impact on your choice of anti-HIV drugs. You are not recommended to take efavirenz (Sustiva) during pregnancy as there is some evidence from animal studies that this can increase the risk of birth defects. On the other hand, nevirapine (Viramune) and AZT (zidovudine, Retrovir), are know to be very good at preventing mother-to-child transmisison.
Should you become pregnant whilst taking efavirenz you should consult your clinic for advice.
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 the section on Mother-to-baby transmission of HIV.
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.
Can I go on holiday?
Of course! It's a good idea though to make sure that you're feeling well enough to travel and to ensure that you've got enough medication with you.
It makes good sense to plan your travel. A few 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 and that you need to have your medicine with you at all time 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 (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 (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).
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 imformation. Often this is available when the clinic or pharmacy is closed.
There is a lot of information about HIV treatment on NAM's website, www.aidsmap.com.