It's not inevitable that you’ll experience side effects. If you do they are generally mild and easy to treat and often go away after a short time. Your doctor can change your treatment or treat your side effects in other ways.
People who are on effective treatment and have an undetectable viral load cannot pass on HIV so it’s important that you are able to take your medicine correctly. It can take up to six months on treatment for some people to become undetectable.
Never stop taking your treatment without talking to your doctor.
Some side-effects are quite common. These include:
If you're worried about a particular side-effect, you may want to talk to your HIV doctor about this when you are deciding which anti-HIV drugs to take. It may be possible to select a combination of drugs that avoids the risk of the side-effect that you are worried about.
Anti-HIV drugs can sometimes cause longer-term side-effects. For example, some cause increases to cholesterol and other blood fats, or disturbances in the functioning of the liver or kidneys. Lipodystrophy (body fat changes, such as losing some fat from your face, legs, arms or buttocks, or gaining fat elsewhere) is a side-effect of some of the older anti-HIV drugs. These drugs are now avoided as much as possible for long-term use.
You’ll be monitored for these and other side-effects as part of your routine HIV care.
In rare cases, people can develop a serious allergic reaction to a drug. The anti-HIV drugs with the greatest risk of hypersensitivity or allergy are:
Doctors can carry out a blood test on people who are thinking of taking abacavir to find out whether they have the HLA-B*5701 gene. This is what puts people at risk of a severe hypersensitivity reaction to the drug, and people who have this gene cannot take abacavir.
In rare cases, other drugs can also cause allergic reactions. These are:
You’ll be told about the sort of allergic reaction that might occur and what symptoms to look out for before you start treatment with the drug. Contact your HIV clinic immediately, or go to the Accident and Emergency (A&E) department of your local hospital, if you develop any of these symptoms.
Your HIV treatment is meant to improve your health and hopefully make sure you have an undetectable viral load (which means you cannot pass on HIV) - so it’s important to remember that you don’t have to put up with side effects. It’s nearly always possible to do something about them.
But for this to happen, it's important that your HIV doctor knows that you are experiencing problems. So it makes good sense to tell your doctor if side-effects are making your life difficult.
Don't stop taking your medication, skip doses, or reduce the number of pills that you take without first speaking to your doctor. You could develop resistance to several drugs that way and your viral load could become detectable which would mean you could pass on HIV to others.
Plan to safely switch to a different treatment, with your doctor's assistance.
In most cases, side-effects are worst in the first few weeks after treatment is started. They can often be controlled with other medications (for example, paracetamol for headache or Imodium for diarrhoea) and many people find that the side-effect lessens or goes away completely with time.
A widely used anti-HIV drug is called efavirenz (Sustiva - it is also in the combination pill Atripla). It makes some people feel drowsy or dizzy, they may find they cannot concentrate, have changes in their mood (including sadness or depression) or have sleep problems.
These side-effects are most likely to occur when treatment with the drug is first started. Often, they then lessen or go away.
Some people find that they can reduce the problem by taking their medication two hours before going to bed - this is what the manufacturers of efavirenz recommend. However, some people prefer to take it in the morning to avoid sleep disturbance, which can include bad dreams.
Taking HIV treatment is vital to staying well when you're living with HIV. But looking after your general health – both physical and mental – also plays a big part in being able to live a healthy and productive life.
You'll be monitored at your clinic appointments. This can help spot any potential problems, so you can receive the most appropriate treatment and care. Try to be as honest as you can with your doctor about any symptoms you are experiencing and about your lifestyle. This will help ensure that you get the care that you need.
Everyone with HIV is recommended to register with a general practitioner (GP). You will still get your HIV treatment and care from your clinic but GPs are often best placed to look after your other day-to-day health needs, and are experienced in looking after people with long-term health conditions. GP practices often provide services that specialist HIV clinics don’t.
Both your HIV clinic and your GP can provide information, advice and help about living a healthier life.
It's good to know that a lot of emotional and mental health support is available, either through your clinic, your GP or through local HIV organisations. Use our Service Finder or contact THT Direct on 0808 802 1221 for details.
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by Anna Peters
Date due for the next review: 16/10/2020
Content Author: S. Corkery (NAM)
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Changing HIV treatmentAmelia Jones
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