All medicines can cause side effects, that includes HIV medication. No one wants to get a side effect from a medicine, but some people taking the medicine do get it anyway. Side effects are described in the medicine’s patient information leaflet.
In brief:
- Like any other medication, HIV medication can cause side effects.
- Not everyone gets side effects.
- No one ever gets all the side effects listed in the leaflet.
- Women experience side effects more often than men.
- Short-term side effects disappear within a few weeks.
- If you suffer from long-term side effects, switching to a new medicine could be a good idea.
- Always report side effects both to your doctor and on www.lareb.nl/en, that means you’re helping them to improve HIV care.
- You can share your experiences of a medicine on www.meldpuntmedicijnen.nl (in Dutch).
Side effects of medication
No one ever gets all the side effects listed in the leaflets. Some people will experience one or two side effects, others don't have any. The potential side effects are different for each type of HIV medication. Your specialised HIV doctor or HIV nurse will inform you about the potential side effects of the combination you are considering taking.
Short-term side effects
After starting or switching to a new HIV medication, you might experience side effects. These are called short-term side effects. Short-term side effects are: fatigue, nausea, vomiting, diarrhoea and headaches. These side effects normally disappear a few weeks after starting the medication. Contact your doctor or nurse if the side effects persist, or are severe. For example, extreme insomnia may be a reason to stop with that HIV medication, and not to wait for the initial side effects to pass.
Long-term side effects
There are many different kinds of HIV medication, and they can all have different side effects. This does not mean you will suffer from side effects. These are the most common side effects:
Kidney problems
Kidney problems are much less common with the new HIV medication than they were with older HIV medication. However, long-term medication use can damage the kidneys. The hospital will regularly check how your kidneys are doing. If you develop kidney problems it may be necessary to change your HIV medication.
Allergic reactions
A few HIV medications can cause allergic reactions. Abacavir and nevirapine are the most likely to cause this. Before you start taking abacavir (this is in Kivexa and Triumeq), your doctor will check if you are not allergic to it. Nevirapine (this is in Viramune) can cause an allergic reaction, especially during the first weeks of taking it. A rash combined with fever can be a sign of an allergy. Always contact a doctor immediately if you think you are having an allergic reaction. This is very rare, but can have serious consequences.
Fatigue
Many people with HIV suffer from fatigue to a greater or lesser degree. This applies not only to people with HIV who have weakened defences and a high viral load, but also to people with HIV with good defences and an undetectable (unmeasurable) viral load. This problem is underestimated.
Fatigue can manifest itself in many ways. Tired once in a while, without having exerted yourself that much, or tired several times a day. Fatigue can also be more severe. So severe that it is difficult to work full days. It is a complaint doctors often overlook. People with HIV often don't bring it up with their doctor, even though fatigue can have a huge effect on quality of life. Fatigue can diminish your social life (too tired, no energy today) and it can make it harder to keep on adhering to your treatment regime. People often think that fatigue is simply part of the HIV infection, or that fatigue simply comes with advancing years. The former is very fatalistic, the latter underestimates the fact that there may be more going on than just getting older.
Fatigue with an HIV infection can have several causes, or a combination of them. Finding out why some people with HIV suffer so much from fatigue requires quite an exploration. The exploration can be difficult because the many possible causes can influence each other. Trying to pinpoint the cause of your fatigue is important to your doctor. Many of the potential causes can be treated. Because there are so many different causes, the solutions are also quite diverse.
The following things can cause fatigue:
Viral load
HIV itself can cause fatigue. The immune system has to fight the virus and that is literally an exhausting task. Anyone who has a high viral load (virus level in the blood) and a low CD4 count, may experience a decrease in fatigue symptoms when they start combination therapy. This is not to say that someone with a high CD4 count and a low viral load won’t have symptoms of fatigue. Some studies find no relationship at all between viral load, CD4 count and fatigue. One study even found more fatigue in people with HIV who have a high CD4 cell count.
You don’t always find the solution, or not completely. This will vary from person to person. Many people with HIV suffer from fatigue, but it is wrong to think nothing can be done about it. To combat fatigue, you should certainly bring it up with your specialised HIV doctor or HIV nurse.
Side effects in women
In general, women have higher levels of HIV medication in their blood than men. This is probably because women weigh less. A higher concentration of HIV medication in your blood means there is more of it to fight HIV . But on the other hand, it also means that a woman is at greater risk of side effects from the drugs. The difference in side effects between men and women may also be due to the interaction between HIV medication and female hormones.
Women are at greater risk of cervical cancer and excessive levels of lactic acid in the blood. The latter can cause damage to the muscles or liver. Some protease inhibitors disrupt the menstruation. This can mean irregular, heavy and painful menstruation. Discuss problems like this with your doctor or HIV nurse. You can also join in with the activities at Posidivas (most in Dutch) and exchange experiences with other women – about HIV medication and other things.
Switch or deal with side effects?
If there are severe side effects, it's wise to change your medication. Click here to read more about switching HIV medication. Sometimes you don't have to, in which case you can treat the side effects with other medicines, for example a medicine for diarrhoea.
Report your side effects
If you are experiencing side effects, it's sensible to tell your doctor or HIV nurse . You know your own body best, and doctors don't notice everything. Your doctor might tell you that a certain side effect is caused by the HIV medication, by HIV itself or by something else. But that still doesn't solve the problem. Many doctors are aware of that, but their response might be very brief if they have a large workload. You should then repeat that you really are suffering from that side effect. Those symptoms can often be treated.
It is also very important to report the side effects to the Bijwerkingcentrum Lareb (Netherlands pharmacovigilance centre lareb). Lareb shares the data on side effects with the CBG (Medicines Evaluation Board). The CBG uses this information for pharmacovigilance in the Netherlands and Europe. Side effects can be a reason for taking a drug off the market or for tightening the regulations on who can prescribe it. The side effect can also be added to the patient information leaflet, and screening for potential serious side effects can be made mandatory during use.
In addition, you can report your experience of a medicine to Meldpunt Medicijnen (in Dutch). You can tell them whether the medication works well, or whether you have suffered any side effects (this gets sent on to Lareb). You can also tell them what you think of the packaging of a medicine. For example, is it easy to open? Are the pills easy to swallow? You can also read other people's experiences.
If you are bothered by an unpleasant side effect, you could also call the Servicepunt (Service Desk) at the Hiv Vereniging (The Dutch Association of People with HIV) (020 - 6892577 – Mondays, Tuesdays and Thursdays, 14.00 - 22.00 or mail This email address is being protected from spambots. You need JavaScript enabled to view it.) for personal advice.
What’s in the medicine’s patient information leaflet?
Side effects are described in the medicine’s patient information leaflet. Any known side effects are listed in the patient information leaflet of your HIV medication, and on this website. The leaflet includes information like:
- What condition or illness the medicine is for.
- How much and how often you should take the medicine.
- When not to take the medicine, for example certain conditions, in combination with other medicines, or if you are hypersensitive.
- Warnings and precautions for use, for example what to do if you've taken too much of the medicine.
- Potential side effects.
Why read it?
Medicines work best if you take them correctly. It is also important to know what side effects to watch out for. Not reporting the side effects to your HIV nurse or doctor could result in unpleasant consequences. By reading the leaflet, you ensure you are taking your medication correctly and avoiding unnecessary risks.
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