ISSN 1475-0740 i-base 0808 800 6013 May 2008 Always watch for out-of-date info Avoiding and managing side effects When, what, why Changing treatment Regular and alternative treatment You and your doctor Further reading HIV i-Base publications: Introduction to Combination Therapy Guide to Changing Treatment HIV, Pregnancy and Women’s Health Guide to HIV and Hepatitis Coinfection HIV Treatment Bulletin All publications are free Please call 020 7407 8488 www.i-Base.info guide to side effects FEBRUARY 2008 MAY 2008 Contents Section 1: General information Introduction 3 General questions 4 How to report side effects 8 Side effects diary 9 How side effects are graded 10 Side effects and drug levels 12 Changing treatment 13 Side effects and adherence 15 You and your doctor 16 Section 2: Individual side effects General side effects: Diarrhoea 18 Nausea and vomiting 22 Fatigue – feeling tired 24 Skin rash 26 Dry skin, nail problems, hair loss, frozen shoulder 28 Sexual problems 29 Insomnia – disturbed sleep 31 CNS side effects: 33 mood alteration, anxiety, dizzyness & sleep disturbance Progressive and acute side effects Peripheral neuropathy 36 Liver toxicity, rash and nevirapine 40 Lactic acidosis, pancreatitis and fatty liver 42 Abacavir hypersensitivity reaction (HSR) 44 Kidney toxicity including kidney stones 45 Increased bilirubin, jaundice (yellow skin or eyes) 46 T-20: injection site reactions (ISRs) and other side effects 48 Lipodystrophy: fat loss, fat accumulation and metabolic changes 53 Heart disease 64 Bone mineral changes 68 Section 3: Further information 70 Disclaimer: Information in this booklet is not intended to replace information from your doctor. Decisions relating to your treatment should always be taken in consultation with your doctor. HIV information dates quickly, please call to see if up-dated information is available. Not-for-profit copying is encouraged or call for additional free copies. Produced by HIV i-Base. www.i-Base.info 2 i-Base publications information phoneline: 0808 800 6013 mon > tues > wed > 12 noon – 4 pm Introduction This is the fourth edition of a booklet This may be because of poor that was first produced in 2001. Over communication when you see your 65,000 copies have been distributed doctor. This may be because there in the UK and it has been translated is not enough time, or perhaps your into over 20 languages including doctor doesn’t understand exactly how Spanish, Italian, Chinese, Bulgarian, you are affected. Sometimes you may Portuguese, Hindi, Nepali, Romanian just forget to mention a problem. Ways and Russian. of improving this communication are We now focus on the most commonly included throughout this booklet. used and recommended treatments, Sometimes, if side effects continue including new and recently approved for several months, you may think it drugs. is easier not to mention them at all This booklet will help you get the or to just put up with them. This is most out of your relationship with your not a good approach as they may be doctor and other health professionals. symptoms of a more serious illness. Newer treatments may also have It should help you get better medical care and improved health. It should become available since you first help you feel more in control of your reported them, which you may not treatment, and, most importantly, to know about. get a better quality of life. The first section of this booklet includes general information, including It has been written by people who are HIV-positive. We have been on many recording side effects, communication of these treatments and had many of with your doctor and your rights as a the side effects.Wehave also learnt to patient. negotiate our own health care in the The second section includes specific NHS with hospitals and clinics. information on each side effect or set Managing side effects is something of symptoms. We have included the that you need to be active about. range of approaches for managing each side effect, including regular Every drug will cause some side medications and alternative treatments effects in some people. But not where appropriate. We have also www.i-Base.info everyone will get the same side effects included information related to HIV with the same drugs. Although you and long-term health – for example may have difficulty with one treatment, heart disease and bone health – even there is nearly always something you though these are less likely to be a can do about it: by altering the dose, side effect of HIV drugs, changing to another drug, or using another drug to treat the side effect. Finally, there is a short list of recommendations for further reading However, many people do not receive online. These links will help you find as much help in managing side effects additional information and will help you as they need. keep up-to-date with future research. i-Base publications 3 guide to side effects FEBRUARY 2008 MAY 2008 General questions What are side effects? Sometimes side effects are so mild that they are rarely noticed, and they Every drug is generally licensed to may only affect a small proportion of treat a specific illness. Any other effect the people who use the drug. is called a side effect. Side effects are also called adverse events (ae’s) or Sometimes side effects only become drug toxicities. apparent after the drugs have been licensed and approved, when many In this booklet we will focus on more people use them over a much unwanted side effects of HIV longer period than the original studies. antiretroviral drugs (ARVs). All drugs have side effects, but not Many of the symptoms of side effects everyone taking drugs will experience are similar to symptoms of illnesses. the same effects and to the same Different treatments are needed when extent. What is important is how they these symptoms relate to illnesses. affect you. Why do side effects occur? The leaflet included with your drugs Although drugs are designed to (called the Summary of Product work against specific illnesses, they Characteristics or SPC) lists all the sometimes interfere with other ways reported range of possible side effects that your body works. associated with each drug. The SPC also includes other useful information It is difficult to develop a drug that including how the drug needs to works against HIV. Any drug that be taken, possible interactions with is approved has undergone a lot of other medications, and other useful research trying to minimise toxicity. information. Often, very promising drugs are never approved because of toxicity. The aim How are side effects for is always to develop safer and more tolerable, as well as better drugs. drugs reported? When drugs are first studied, every Most people – people living with HIV, side effect is recorded, even if it doctors and researchers – recognise cannot be directly linked to the drug that the current drugs available to treat being studied. This means that if you HIV are far from perfect. New drugs in look at the leaflet that comes with your the future should be easier to tolerate. treatment you usually find a long list of Do all drugs have side potential side effects. effects? The risk of getting most of these listed side effects is usually very low - often Most drugs have side effects of some less than a 1 in 10 or 1 in 100 chance. sort. In the majority of cases these will be mild and easily manageable. www.i-Base.info 4 i-Base publications information phoneline: 0808 800 6013 mon > tues > wed > 12 noon – 4 pm If side effects only become apparent Often people are not given a choice after the drug has been approved, when starting treatment. This is not as with lipodystrophy, the drug leaflet right. your doctor should at least talk may not have this latest information. about two options. If you ever need to change a drug Starting treatment for the because of tolerability, you can first time? usually use it again later if you need Everyone worries about the risk of to [except for abacavir - see page 44]. side effects before they start HIV Just because you used a drug once, treatment. It will help if you know what doesn’t mean you have ‘used up your to expect from different drugs before option’ of using it again in the future. choosing your combination. Usually side effects improve after Ask for information about each of the the first few days, weeks or months, drugs you might take, including the but sometimes they don’t. See the likelihood of side effects. Ask what sections on each side effect in this percentage of people had side effects guide for an idea of how long you related to each drug and how serious should put up with them before they were. changing. You may be asked to consider You do not have to continue with a entering a study looking at side effects drug to prove anything to yourself in different combinations. These or your doctor. If something is studies are important to define the wrong, ask your doctor to change extent of side effects when different to something else. Some drugs are drugs are used together. just not for everyone. Can I change drugs easily? Can I know if I will get side If this is your first combination, you effects? will usually have a lot of flexibility in Generally you cannot know how choosing and changing drugs until you difficult or easy you will find any find a combination that works and is particular drug until you take it. Some tolerable. symptoms may make the risk of side www.i-Base.info There are more than 20 HIV drugs effects greater.