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 SIDE EFFECTS MANAGEMENT 

WHAT ARE SIDE EFFECTS

HOW TO REPORT SIDE EFFECTS

WHAT ARE SIDE EFFECTS?

Side FX / Side Effect: Any unwanted effect of a drug or treatment. Also called adverse events (ae’s) or drug toxicity. Some side effects are minor; others can be life threatening.

Why do side effects occur?

Although drugs are designed to work against specific illnesses, they sometimes interfere with other ways that your body works. The current drugs available to treat HIV are far from perfect and some do cause side effects.

Do all drugs have side effects?

Most drugs have side effects of some sorts, although usually they are mild and easily manageable. Sometimes side effects are so mild that they are rarely noticed. Sometimes side effects only become apparent after the drugs have been in use over a longer period. All drugs have side effects, but not all people taking drugs will experience the same effects and to the same extent.

The leaflet included with your drugs will list all the reported range of possible side effects associated with each drug.

What about starting treatment for the first time?

Risk of side effects can be a big worry if you are about to start HIV treatment for the first time. It will help if you know what to expect from different drugs before choosing your combination. Ask for information about each of the drugs you might take, including the possible side effects. For example, what percentage of people had side effects related to those drugs and how serious they were?

Can I change drugs easily?

If starting treatment for the first time, you will have a lot of choice of combinations of drugs that work and are tolerable. There are already over 14 HIV drugs, and while you can’t mix and match them all, you have a lot of choice in how they are used. If you find one or more of the drugs in your combination difficult to tolerate, you can change it for another. The fewer drugs you have used previously, the more choice you have to change. If you change a drug because of the side effects, you can usually go back and use it later if you need to (except for abacavir). Sometimes side effects improve after the first few weeks or months, but sometimes they don’t. You do not have to continue with a drug to prove anything to yourself or to please your doctor. If you know something is wrong, ask your doctor to change it to something else. Some drugs are just not for everyone.

Are side effects different in men and women?

Yes. Women have shown higher rates of side effects in some nevirapine studies (both liver toxicity and rash). With lipodystrophy (changes related to fat distribution), women are more likely to report symptoms of fat accumulation rather than fat loss.

How do I get my doctor to do something?

Unfortunately some doctors generally think that people overestimate and exaggerate side effects. It is also true that most people actually underestimate side effects. People generally say that side effects are less inconvenient or less difficult than they really are, or often forget to mention them at all.

This means there can be a big difference between what is actually going on and what doctors think is going on – and this is why side effects are often under treated. Therefore it is important that when attending your doctor you report on all the side effects you are experiencing.

Are there treatments for side effects?

Usually there are. Most side effects reduce or disappear with time. If the first treatment you are given to help with a side effect does not work, there are usually others that you can use that may be more tolerable.

This booklet lists a range of options, including alternative treatments, for each of the main symptoms. If one doesn’t work – try the other options. Changing or stopping treatment are important options that you can discuss with your doctor.

If your quality of life is very bad because of the side effects, you may chose to look at experimental strategies like treatment interruption or immune-boosting treatment such as IL-2.

HOW TO REPORT SIDE EFFECTS?

Frequency how often do you get symptoms
Duration how long do the symptoms last
Severity how bad are the symptoms
Quality of Life how do these symptoms affect your quality of life

If you want your doctor to understand your side effects and how they are affecting you, you will need to be able to describe them very clearly. This will be important for your doctor to check for other causes (i.e. that diarrhoea is not related to food poisoning or low sex drive to low testosterone levels). The best way to do this is to keep a side effects diary from when you start a new treatment until you next see your doctor.

How to describe symptoms is given in the following sections. This usually includes:

Frequency:

How often do you get symptoms?
Once/twice a week? Every day or 5 – 10 times a day etc?
Do they occur at night as well as during the day?

Duration:

How long do the symptoms last?
If you feel sick or get headaches, do they last for 20 minutes or for 3 – 4 hours, or for different times?
Is there a pattern to when they occur – i.e. when you take your medications or at a regular time afterwards?

Severity:

How bad are the symptoms?
It helps to rate them on a scale (1 for very minor to 10 for very severe). A scale is a useful tool for describing anything that involves pain.
Recording how severe side effects are when they occur is better than recording them later.
Have you noticed anything that helps to reduce or stop them?

Quality of life:

This can really help your doctor understand how difficult the side effects are for you. Many people put up with chronic diarrhoea without explaining to their doctor that it stops them ever going to the pub or the cinema.

If you are feeling more anxious or nervous, are not sleeping properly, have a lower sex drive, have experienced taste changes, or are too nauseous to eat proper meals, it is important that your doctor understands this.

Symptoms of lipodystrophy are difficult to evaluate. Although minor changes may not be a problem, some people find that more severe symptoms can change their whole outlook on life, and become a cause for underlying depression.

If side effects are affecting adherence (i.e. you are not taking all your medication at the correct time) and how you take your treatment, you must tell your doctor about this.

A side effects diary is included on page 8. Take this diary with you when you see your doctor at your next appointment.

[ Reporting Side FX ] Grading Side FX ] Side FX & Drug Levels ] Changing Drugs ] Your Rights ] Diarrhoea ] Nausea & Vomiting ] Fatigue ] Skin Rash ] Dry Skin, Hair Loss ] Sexual Problems ] Insomnia ] CNS FX with Efavirenz ] Peripheral Neuropathy ] Liver Toxicity ] Lactic Acidosis ] Abacavir Sensitivity ] Kidney Stones ] Bone Changes ] Heart Disease ] T-20: ISR ] Increased Bilirubin, Jaundice ]

 

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