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Taking control of side-effects

Side-effects can be annoying, inconvenient, distressing and sometimes even frightening. But it can be helpful to know that it is not inevitable that you will experience them. You can often take action to reduce the risk of side-effects in the first place. And if you do experience side-effects, there is nearly always something you can do about them.

Your approach to side-effects

Having a realistic approach to side-effects can be a good place to start. Although it is important to recognise that HIV treatment can cause side-effects, it is equally important to acknowledge that:

  • They do not always happen. You may not have any side-effects at all.
  • The anti-HIV drugs that are most widely used today don’t cause the severe side-effects that earlier HIV drugs caused.
  • HIV treatment can give you the chance of a normal lifespan. Putting off starting treatment because of a fear of side-effects can increase your risk of becoming ill. Starting treatment when you have a weak immune system might even increase your risk of side-effects.
  • Most side-effects are mild and often lessen, go away completely, or can be controlled with other treatment.
  • Some side-effects can be controlled safely with other treatment.
  • HIV treatment is meant to make you better. You do not have to put up with side-effects. If you cannot cope with a side-effect, the chances are that something can be done about it.
  • There are now lots of HIV treatment options available and you might be able to switch to a treatment that does not cause the side-effect you are experiencing.
  • Stopping your treatment without your doctor’s help can lead to other treatment complications. If you are not happy with your HIV treatment because of the side-effects, you should discuss this with your doctor as soon as possible.

Finding out about side-effects

If you are about to start or change HIV treatment, finding out about the side-effects that anti-HIV drugs can cause might help you choose the most suitable combination of drugs for you. But remember, just because the side-effects are listed in information about the drug does not mean you will experience them.

Later in this booklet are details of some of the most commonly used HIV treatment combinations and details of the side-effects that these drugs can cause. There are also details of what you can do about these side-effects.

You can also use NAM’s online tool, My drugs chart (www.aidsmap.com/my-drugs-chart), to find out about common and rare side-effects for all the anti-HIV drugs currently available.

Talking about side-effects

It is important to talk to your doctor, HIV specialist nurse or pharmacist about the risk of side-effects and how they might affect you. During this discussion it’s a good idea to mention your medical history, that of your family and any lifestyle issues that might affect your risk of side-effects. It is also important to tell your GP of any HIV medicines that you are taking, to prevent them prescribing a drug which may cause harmful interactions

Things you need to tell your HIV healthcare team include:

  • Known or suspected allergies to any other medicines, including creams, eye drops and inhalers.
  • Other important health conditions – for example, heart, liver or kidney disease, or mental health problems such as depression.
  • Use of any other drugs – including prescription, over-the-counter, complementary (herbal) or recreational drugs.

If you are worried about a particular side-effect, tell a member of your healthcare team. They should be able to give you more information about this side-effect and talk through your concerns with you. They may be able to recommend an alternative treatment, or ways of reducing the risk or impact of the side-effect.

Your doctor or the pharmacist will tell you if the medicines you are prescribed might cause any potentially dangerous side-effects and what the symptoms of these can be. If there is anything you do not understand, it’s a good idea to ask for more information. You should be given the contact details of someone to contact when the clinic is closed, in case you think you might be experiencing potentially dangerous side-effects.

Starting or changing HIV treatment is rarely done as an emergency and it is highly unlikely that you will have to make an instant decision about your HIV treatment. If it’s possible, you may find it helpful to start treatment at a time when you have fewer other stresses in your life and you can give yourself time to cope with any early side-effects that you might experience. You may find NAM’s online tool, Get set for HIV treatment (www.aidsmap.com/getset), useful in helping you prepare for starting treatment.

Your lifestyle and side-effects

The way you look after your health can help reduce the risk of developing some side-effects, or make side-effects less severe if they do occur.

Starting HIV treatment is likely to be a major event in your life, so be realistic about your ability to cope with potential side-effects. Changing treatment can happen with very few problems, but sometimes it can also be stressful. If possible, it makes good sense not to plan other major life changes that coincide with starting or changing treatment.

It is also useful to remember some general health tips.

  • Make sure you eat! And think about what you eat. A healthy, balanced diet is essential to overall health. A good place to find out about eating well is the NAM booklet, Nutrition. Your HIV clinic will be able to refer you to a dietitian who can offer advice and information about your diet.
  • Sleep is essential to good physical and mental health. If you are having problems sleeping, help is available from your HIV clinic or your GP.
  • Feeling able to cope with life’s ups and downs is just as important as being in good physical health. You can find out about looking after your mental health in the NAM booklet, HIV, mental health & emotional wellbeing.
  • Regular exercise is important. It will make you feel better and can also reduce the risk of developing some serious illnesses. You may want to ask at your HIV clinic if they can refer you to exercise schemes for people with HIV, or ask your GP about exercise on prescription if you are unsure about starting an exercise programme.
  • Smoking causes many health problems, including lung cancers, heart disease and strokes. If you smoke, try to stop. The NHS offers free help if you want to stop smoking. Talk to your doctor for more information.
  • Watch how much alcohol you drink. Regularly drinking more than the recommended number of units can cause health problems such as liver disease, heart disease and stroke. 
  • Be careful about using recreational drugs. If you’re concerned about either your alcohol or drug use, you might want to mention this to someone at your HIV clinic, or your GP, as help will be available.

Changing experience of side-effects

Many people taking HIV treatment will experience some sort of side-effect at some time. But most of these side-effects are mild, temporary or treatable.

So it might be useful to remember that even if you are having a difficult experience of side-effects, or feeling low because of them, it is highly unlikely that this will always be your experience.

But it’s equally important to remember that you don’t have to put up with side-effects, or deal with them on your own. HIV treatment is intended to keep you well. If a side-effect is affecting the quality of your life, it makes good sense to tell your HIV doctor, nurse or pharmacist – help will be available.

It’s particularly important to do something about a side-effect if it means you are less likely to take your treatment at the right time, or in the right way (often called adherence). Good adherence is key to your HIV treatment being effective. But it can be harder to take your treatment if you’re expecting it to make you feel less well.

Reporting side-effects

It’s important to tell your doctor about any symptoms that you are experiencing. Your doctor will discuss with you whether these are actually side-effects and, if so, will be able to give you advice and help you make a decision about what to do about the symptom. You may find it helpful to keep a record of the symptoms you’re having – how often you have them and how long they last, when they occur and how severe they are, for example. Try to explain to your doctor the effect these symptoms have on your day-to-day life. It’s important your doctor knows if they stop you from doing the things you normally do, or if they are affecting your mental health.

You can also report side-effects to the government agency in charge of monitoring the safety of medicines using a facility called the Yellow Card Scheme.

You can do this online at www.yellowcard.gov.uk. You’ll be asked to fill out a form, which is confidential.

If your side-effect has been caused by an anti-HIV drug you’ll also be asked to provide some additional information such as your CD4 cell count, viral load, previous illnesses and previous side-effects. This information helps researchers to understand if the risk of side-effects is connected with any particular factors, but bear in mind that the information you give will not be reported to your healthcare team, so you should talk to your doctor about any side-effects you are concerned about.

Side-effects

Published July 2013

Last reviewed July 2013

Next review July 2016

Contact NAM to find out more about the scientific research and information used to produce this booklet.

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.