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. It can also be helpful to remember that you can 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.

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:

• 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.
• HIV treatment can give you the chance of a near-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.
• The anti-HIV drugs that are most widely used today don’t cause the severe side-effects that earlier HIV drugs caused.
• Some side-effects can be controlled safely with other treatment.

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.

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.

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.

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 good 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 doctor include:

• Known allergies to any other medicines.
• Other important health conditions – for example heart, liver or kidney disease, or mental health problems such as depression.
• Use of other drugs – prescription, over the counter, complementary or recreational drugs.

If you are worried about a particular side-effect, then 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 suggest ways of reducing the risk or impact of the side-effect.

You should be told by your doctor or the pharmacist 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, then it’s a good idea to ask for more information. You should be given the contact details of who to contact if you think you might be experiencing potentially dangerous side-effects and your clinic is closed.

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 few other stresses in your life and you can give yourself time to cope with any early side-effects that you might experience.

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

Starting or changing HIV treatment is likely to be a major event in your life, so be realistic about your ability to cope with potential side-effects. 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 good balanced diet is essential to overall health. A good place to find out about diet 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, then it is good to know that help is available. Your HIV clinic or your GP will be able to help.
• Feeling able to cope with life’s ups and downs is just as important as being in good physical health. You can find out more about looking after your mental health in the NAM booklet, HIV and mental health .
• 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 an exercise scheme for HIV-positive people.
• Smoking causes many health problems, including lung cancers, heart disease and strokes. Don’t start smoking. Try to stop smoking if you already smoke. 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, then you might want to mention this to someone at your HIV clinic, or your GP, as help will be available.

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 make you better. If you cannot cope with a side-effect, then it makes good sense to tell your HIV doctor, nurse or pharmacist – help will be available.

It’s important to tell your doctor about any symptoms that you are experiencing that might be due to side-effects. Your doctor will be able to give you advice and help you make a decision about what to do about the symptom.

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

You can do this online here:

http://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.