Features

Side Effects

The following questions cover concerns when starting treatment for the first time.

What are side effects?
Every drug is generally licensed to treat a specific illness. Anything else that occurs is called a side effect. Side effects are also called adverse events (ae’s) or drug toxicity.

Why do side effects occur?
Although drugs are designed to work against specific illnesses, they sometimes interfere with other ways that your body works.
Often, very promising drugs have their development stopped because of toxicity. The aim is always to develop safer and more tolerable, as well as better drugs. Most people – people living with HIV, doctors and researchers – recognise that the current drugs available to treat HIV are far from perfect.

Don’t look at the drugs you start with now as a treatment that you will be taking forever. Look at them as something you have to be really committed to for the next couple of years. Take this new aspect of your life more seriously than anything else until you get it right.”

But they are already much better than they used to be. We know how to use them and what to look out for. New drugs in the future should be easier to tolerate.

Do all drugs have side effects?
Most drugs have side effects of some sort. In the majority of cases these will be mild and easily manageable. Sometimes side effects are so mild that they are rarely noticed, and they may only affect a small proportion of the people who use the drug.

Sometimes side effects only become apparent after the drugs have been licensed and approved, when many more people use them over a much longer period than the original studies.

All drugs have side effects, but not all people taking drugs will experience the same effects and to the same extent.

Worrying about side effects is putting me off treatment…
Everyone worries about side effects before starting treatment. No wants to take drugs. But because treatment can stop HIV in its tracks, means that the generally low risks are outweighed but much greater benefits. Still, until you experience this for yourself, it is understandable to be cautious.

Many people also do there own research online using community websites that have information about each of the main drugs that are used, and about side effects in general.

In practice, for most people, treatment turns out to be much easier than they thought. When side effects occur after starting treatment, they are more likely to mild and manageable, and for most people they get much easier after a week or two.

Still, it is important to have information about what to look out for, before you start any treatment.

Ask for information about each of the drugs you might take, including the likelihood of side effects occurring. For example, what percentage of people had side effects related to each drug? Or how many people stopped treatment because they were serious?

Once you start treatment you will be carefully monitored for
side effects.

Where do I get information?
Your doctor, nurse, and pharmacist should talk to you about the side effects that are most common with each drug in your combination.

You should be given written information so you can read about it later. They should also tell you about what to do if you get a side effect. Usually this is to contact the clinic so that they can help.

Many people also do there own research online using community websites that have information about each of the main drugs that are used, and about side effects in general. See the websites recommended at the end of this article.

The leaflet included in the packaging with your drugs (called the Summary of Product Characteristics, SPC) lists all the reported range of possible side effects associated with each drug. The SPC also includes other useful information including how the drug needs to be taken, possible interactions with other medications, etc.

How important is it to tell my doctor?
Many of the symptoms of side effects are similar to symptoms of other illnesses. Even when a certain side effect is expected, it is important to tell your doctor. This is the case with common side effects including nausea, diarrhoea, and fatigue. Different treatments are needed when these symptoms relate to illnesses.

If a side effect is making your life difficult, or if it continues and does not respond to treatment, it is especially important to talk
about this. 4 How are side effects for drugs reported?
In drug trials, every side effect that occurs is recorded, even if it only affects a few people, and even if it cannot be directly linked to the drug being studied. This means that if you look at the leaflet that comes with your treatment you usually find a long list of potential side effects. Many or even all of these are unlikely to happen to you. Side effects that are serious or occur most frequently are also usually discussed in more detail.

Can I change drugs easily if a side effect persists?
Yes. Especially if this is your first combination, as you will usually have a lot of flexibility in choosing and changing drugs until you find a combination that works and is tolerable.

You do not have to continue with a drug to prove anything to yourself or to please your doctor. If something is wrong, ask your doctor to change to something else. Some drugs are just not for everyone.
There are already 20 HIV drugs approved in the UK, including several formulations that include more than one drug in each pill. While you can’t quite mix and match them all, you have a lot of choice. If one or more of the drugs in your combination are difficult to tolerate, you can change it for another.

Often people are not given a choice when starting treatment.
However, the fewer drugs you have used previously, the more choice you have to change. Before starting any treatment, ask about the alternatives. Why your doctor prefers one rather than another. You may have very good reasons to choice the alternative that you doctor doesn’t know about.

If you change a drug because of tolerability, you can usually go back and use it later if you need to. Just because you used a drug once, doesn’t mean you have ‘used up your option’ of using it again in
the future.

Can I predict if I will get side effects?
Unfortunately, you cannot predict how difficult or easy you will find it to take any particular drug beforehand. Sometimes, if you already have similar symptoms related to the side effects, these may make the risk of side effects greater. For example, if routine liver tests show that you have raised liver enzymes, they may increase even higher if you use nevirapine. If you have high cholesterol or triglycerides before treatment, these are more likely to increase if you use some protease inhibitors.

Are side effects different in men and women?
Many trials in the past enrolled too few women to be able to study differences between men and women. Sometimes such differences in side effects have been reported later.
Women have shown higher rates of side effects in some nevirapine studies (both liver toxicity and rash), which highlights the importance of careful monitoring. In this example it took many years before we found out that women were at a higher risk if their CD4 count was over 250 cells/mm3 when they started treatment with nevirapine, and this is now not recommended.
With lipodystrophy (changes related to fat distribution), there may be difference relating to gender.

What about side effects and adherence?
Whether you are starting your first treatment or have been using HIV drugs for a long time, your doctor should have talked to you about the importance of adherence.

This is the term that describes taking the meds in your combination exactly as they are prescribed - ie on time and following any diet advice.

If you miss doses you risk getting resistance to your current treatments and other similar drugs. If side effect are causing you to want to miss doses, then you need to change treatment. Your HIV drugs have to be tolerable.
Go back to your clinic for
more help.

Getting your doctor to help…
Sometimes people continue with side effects for far too long. Sometime this is because of communication difficulties or because your doctor hasn’t understood how important they are.

Unfortunately, some doctors generally think that their patients OVER estimate side effects. They think that their patients exaggerate side effects, and that they are not really as bad as their patients say.

It is also true that most patients actually UNDER estimate side effects. Patients 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 your doctor thinks is going on. This is why side effects are often under-treated.

What happens if side effects persist?
If the first treatment you are given to help with a side effect does not work, there are usually other drugs that you can use and these may be more tolerable. This is why we have listed a range of options, including alternative treatments, for each of the main symptoms. If one doesn’t work – try the other options. Changing treatment is always an important option that you can discuss with your doctor. PN

The following questions and answers was adapted from the i-Base ‘Introduction to Combination therapy’ and the ‘Guide to Avoiding and Managing Side Effects’. Both guides are available free and are also online: www.i-Base.info

i-Base runs a confidential free phone information line where you can talk about side effects or other treatment questions to an HIV-positive treatment advocate. Please call 0808 800 6013 on Monday, Tuesday and Wednesday from 12.00-4.00pm.

Community websites that include information on individual drugs include:
www.tpan.org
www.aidsmeds.com
www.aidsmap.com
www.aidsinfonet.org