Starting ART – and using meds for the first time
This page is mainly about people starting ART for the first time. But it also includes information about changing treatment, adherence and getting your doctor to help.
If you are starting ART for the first time, it is common to worry about possible side effects.
Luckily, with modern drugs side effects are now more rare. If they do occur, they are generally mild and resolve within the first few weeks.
But even if the risk is low, it can be reassuring to have information about what to expect.
Ask your doctor how many people get side effects with each drug. Ask how often they are serious.
If you are still worried, perhaps talk to other people who are already on ART. Some clinics have HIV positive peer advocates who provide support. Or they can link you to a local HIV organisation.
You can also ask for the out-of-hours phone and email contact details for your clinic. This will make sure you always have a contact if you start treatment over a weekend.
Can I know if I will get side effects?
You cannot know whether you will get side effects from a drug until you take it.
The only way to know is to try, and you will be carefully monitored.
Worrying about potential side effects
Although the risk is very low, the information about potential side effects can sound worrying.
For example, common medicines like aspirin or paracetamol have many potential side effects (see Table 1).
But these are so safe that they don’t even need a prescription. This shows how the drug listing can be vey different from most people’s experience.
|Dyspepsia (digestive problems), nausea, vomiting. Less commonly, irritation of the gastrointestinal mucosa may lead to erosion, ulceration, gastrointestinal bleeding. Hepatotoxicity (liver toxicity), which occurs rarely.|
|Hypersensitivity reactions including urticaria (rash), rhinitis (nasal problems), angioedema (swelling under the skin) and severe bronchospasm (blocked airways).|
|May cause salt and water retention as well as a deterioration in kidney function.|
Can I change drugs easily?
Everyone should be offered at least two options whenever you start or change treatment. Ask about the advantages and disadvantages for each one.
In the UK, everyone should be given a choice. Even if your doctor recommends one combination, you need to be involved.
If you do have problems with the first combination, you can easily modify the drugs.
There are lots of HIV drugs to chose from. 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 side effects, 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.
Are side effects different by gender?
Generally, side effects are similar for all people. Sometimes, other factors, such as weight, might explain any differences as smaller people might absorb relatively higher drug levels.
Most HIV studies have a higher proportion of men compared to women and they include very few transgender people.
When data is available, it generaly shows few differences by gender.
What about side effects and adherence?
If side effects affect your adherence your doctor needs to know about this.
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 of us underestimate side effects when we talk to our doctor.
- We don’t like to make a fuss.
- We say they are more manageable than they really are.
- Sometimes we even forget to mention them at all.
Unfortunately, some doctors think that we overestimate side effects.
- They think people exaggerate side effects, and that they are not really as bad as we 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.
Talk to your doctor about any problems. This should not be about how you feel on the day you see you doctor but about how you feel on days you get side effects.
If you don’t say something, nothing will change.
What happens if side effects continue?
In the UK, if your first combination has side effects, it is usually easier to change to a different combination.
This is better than trying to treat the side effect.
But if your choices of ART are limited this guide includes ways to reduces the symptoms, including lifestyle changes and alternative treatments.
Sometimes this includes other medicines and sometimes lifestyle or over-the-counter options.
What about research into side effects?
You might be asked to join 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, so you might get better care. Research is essential if we want new and better drugs in the future.
Last updated: 1 November 2021.