Starting treatment for the first time?
Everyone worries about the risk of side effects before they start treatment. Before choosing your combination, ask for information about each of the drugs you might take. Ask about the likelihood of side effects. Ask what percentage of people had side effects related to each drug and how serious they were.
You may be asked to consider entering a study looking at side effects. These studies are important to define the extent of side effects when different drugs are used together.
People in studies are monitored more carefully and more frequently and are essential if we want new drugs in the future.
Before starting treatment, ask for the out-of-hours phone and email contact details for your clinic.
Can I change drugs easily?
If this is your first combination, you should be offered at least two choices. Ask about the advantages and disadvantages for each one.
Some people are not told that they have a choice. This is not right. Even if your doctor prefers one combination, you need to be involved in this choice.
If you have problems with the first combination you use, you can easily change to alternative drugs until you find one that works and is tolerable.
There are more than 25 HIV medications in the UK, including several that include more than one drug in each pill. While you can’t quite mix and match them all, if one or more of the drugs in your combination is difficult to tolerate, you can change it for another.
If you change a drug because of tolerability, you can usually use it again later if you need to [except for abacavir].
Just because you used a drug once, does not mean you have ‘used up your option’ of using it again in the future.
Usually side effects improve after the first few days, weeks or months, but sometimes they don’t. See the sections on each side effect in this booklet for an idea of how long you should put up with them before changing.
You do not have to continue with a drug to prove anything to yourself or your doctor. If something is wrong, ask your doctor to change to something else. Some drugs are just not for everyone.
Can I know if I will get side effects?
You cannot know how difficult or easy you will find a drug until you take it.
The risk of some side effects may be related to your health when you start treatment.
For example, if you have raised liver enzymes, they may increase even higher if you use nevirapine.
If you start with high cholesterol or triglycerides, they may be more likely to increase if you use some protease inhibitors or efavirenz.
Are side effects different in men and women?
Generally, side effects are similar between men and women. Sometimes, other factors, such as weight, may explain any differences as smaller people may absorb relatively higher drug levels.
Many trials enroll too few women to be able to study differences between men and women. However, more recent studies have not shown differences in the type of side effects experienced.
One exception is that women have higher rates of side effects with nevirapine (both liver toxicity and rash), which is why careful monitoring is essential. This risk is related to CD4 count. Women should not start with nevirapine if their CD4 count is over 250 cells/mm3. The cut-off for men is 400 cells/mm3.
There may also be differences relating to lipodystrophy and gender.
What about side effects and adherence?
If side effects affect your adherence your doctor needs to know.
Adherence is the term for taking the meds in your combination exactly as they are prescribed. It includes taking them on time and following any dietary advice.
There is a special section about adherence and side effects.
Getting your doctor to help…
Many people underestimate side effects when they talk to their doctor.
- They don’t like to make a fuss.
- They say they are more manageable than they really are, or
- They sometimes forget to mention them at all.
Unfortunately, some doctors think that their patients overestimate side effects.
- They think their patients exaggerate side effects, and that they are not really as bad as their patients say.
This means there can be a big difference between what is actually going on and what your doctor thinks is going on.
This is one reason that side effects are often under treated.
Tell your doctor about any problem. If you don’t say something, nothing will change.
What happens if side effects continue?
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.
In this guide we list a range of options, including alternative treatments, for each main symptom. If one doesn’t work then try others.
Changing one HIV drug for another is also an important option.
Stopping treatment is not generally recommended, but for some patients in some circumstances, this may still be considered. This would be when the benefit of treatment is low but when side effects are difficult or severe.