Coping with treatment

10 things you should know about HIV treatment in Jersey
Newly diagnosed
What is HIV therapy?
When should anti-HIV treatment be started?
Which drugs are recommended for first-line treatment?
Dealing with side effects
Questions to ask your doctor before starting treatment
Adherence tips
When and why you may want to change HIV treatment
Keeping yourself up to date

10 things you should know about HIV treatment in Jersey

You will get the best clinical care at the Sexual Health Clinic at the Department of Genito-Urinary Medicine at the General Hospital, where HIV specialists will regularly check your health and advise on treatment. Limited timed appointments are available during normal working hours (9am-5pm). Appointments can be made by calling 622856.
All sexual health notes at the clinic are stored separately and securely from hospital notes. Test results are never given out to any third party unless requested by the patient.
HIV treatment and clinical care is free at the Sexual Health Clinic in Jersey.
HIV treatment slows the spread of HIV in the body, prevents illness, and prolongs life.
Not everybody has to take HIV treatment straightaway. It’s different for different people.
HIV treatment is sometimes called combination therapy as it includes three (and sometimes more) different drugs.
You need to take all your anti-HIV drugs, as instructed.
Some people get unpleasant side effects from treatment.
HIV treatment can help prevent a mother passing on HIV to her baby.
Even when you are taking anti-HIV treatment, you can still pass on HIV to somebody else if you have unprotected sex or share needles or injecting equipment.

Newly diagnosed

Most people do not need to start anti-HIV treatment at the time of their diagnosis. Instead it is more likely that you will begin regular monitoring of your health to give both you and your HIV doctor a better understanding of how your body is coping with HIV.

If you are unwell because of HIV when you are first diagnosed, or if you have a low CD4 cell count (which measures the strength of the immune system), then you might have to consider anti-HIV treatment sooner.
You will not have to make an instant decision at the clinic on the day of your diagnosis. It is likely that you will be given an appointment to come back and see a specialist HIV doctor in the next few days or weeks when you’ll be able to talk through your options.

It is very important that you see the HIV specialist at the General Hospital in Jersey at regular intervals for check-ups. If you are well and don’t need anti-HIV treatment, then this might be every three to six months. But if you are unwell, or need to start anti-HIV treatment you will need more regular appointments. At these appointments you will be asked how you are feeling, if you have any symptoms, and you will have blood tests.

What is HIV therapy?

HIV therapy uses anti-HIV drugs, known as antiretroviral drugs, to treat HIV. They can prolong life and good health by reducing the harmful effects of HIV on the immune system. Currently available drugs stop HIV reproducing in the body but they do not eliminate HIV from the body.

Drugs people take to treat HIV are called ’combination therapy’ because people usually take three different drugs at the same time. Combination therapy is also sometimes called ’treatments’, ’anti-HIV treatments’ or ’HAART’ (Highly Active Anti-Retroviral Therapy).

HIV therapy is a treatment, not a cure.

When should anti-HIV treatment begin?

People with HIV always require individualised care, which is based on the patient’s past and present state of health, and on wider factors, which influence daily life.

The BHIVA (British HIV Association) makes treatment recommendations based on clinical trials and the experience of HIV experts but it should be noted that although research in the field of HIV moves very quickly, there is still not enough scientific research to answer all questions about the best use of HIV treatments.

The following information is based on ’best practice’ guidance available in July 2008. For further information go to http://www.bhiva.org/cms1222226.asp

The current view is that anti-HIV treatment is beneficial if:

You have symptoms of HIV or AIDS
If you have a CD4 count around 350

There is good evidence that starting treatment when your CD4 count is around 350 reduces your risk of developing not only HIV-related illnesses, but also other serious illnesses as well, including heart, kidney and liver disease and some cancers.

Treatment of people with a CD4 count of 350 is also encouraged for people who have any of the following characteristics:

A viral load over 100,000.
A rapidly falling CD4 cell count (80 cells or more a year).
Any HIV-related illnesses.
Co-infection with hepatitis B or hepatitis C virus (or both).
Age over 50 years
A risk of heart disease
A partner who is HIV-negative

If you are advised to start treatment, but choose not to then you should review your decision regularly and have your CD4 count and viral load monitored more frequently than usually advised.

Everybody who has been diagnosed with an AIDS-defining infection or cancer is recommended to start ant-HIV treatment. An exception is tuberculosis (TB) if your CD4 count is above 350. In most cases your anti-HIV treatment should begin once you have finished treatment for your infection.

If you have been diagnosed with lymphoma, you should start ant-HIV treatment as soon as you start chemotherapy.

Which drugs are recommended for first-line treatment?

You are currently recommended to start treatment with Sustiva (efavirenz) with either Truvada (tenofovir and FTC) or Kivexa (3TC and abacavir).

Further information can be found at http://www.aidsmap.com/files/file1000889.pdf

Dealing with side effects

People often experience side effects when taking antiretroviral therapy, especially during the first few weeks of treatment. Your HIV doctor can prescribe a number of drugs to help you cope with this initial period.

The side effects most commonly reported include headache, nausea, diarrhoea, and tiredness. Report any side effects, especially rash and fever, to your doctor promptly. It may help to keep a diary of the problems you are having. Take this with you to the clinic so that staff can understand how often you have problems, how long they last for, how severe they are, and how they affect your quality of life.

It is often possible to relieve side effects by taking other medications that will not interfere with your anti-HIV therapy. For example, your doctor can prescribe anti-nausea drugs and painkillers can be used to relieve headaches. Anti-histamines can relieve some skin rashes. Elevated blood fat levels may be managed using lipid-lowering drugs. In some cases side effects may be improved if a drug is taken with food. Another option with some drugs is to escalate the dose gradually.

You should also be aware that some prescription drugs and some drugs, which you buy over the counter at the pharmacist, should not be taken in combination with certain antivirals.

To help increase the chances of all your drugs working effectively and to minimise the possibility of side effects, make sure you tell you HIV doctor and HIV pharmacist about all the medicines you are taking. This includes prescribed medicines, medicines you buy from the chemist, herbal and traditional medicines, and recreational drugs. Also check before you take anything new (whether you buy it yourself or have it prescribed by a doctor or dentist).

Further information about side effects can be found at http://www.aidsmap.com/files/file1000883.pdf

Questions to ask your doctor before starting treatment

To work, anti-HIV drugs have to be taken properly. This is more likely to happen if you have taken part in decisions about your treatment and are supported in, and committed to, taking it.

HIV doctors are used to having patients that ask lots of questions and get very involved in treatment decisions. It is reasonable to expect your doctor to:

Explain things clearly to you
Give you a range of options
Tell you about the risks and benefits of each option
Answer your questions in a way you understand
Pay attention to your concerns
Respect your confidentiality
Treat you as an individual
Offer you the best available treatments

Before you appointment it may be helpful to make a list of the issues and questions you want to discuss, so you don’t forget anything. Here are some questions you may want to ask before starting treatment:

What is the name of the drug?
What does it look like?
How and when do I take it?
What side effects might I experience?
What can I do to relieve side effects?
Can I stop treatment if I can’t stand the side effects, or want a break?
What do I do if I miss a dose, or take too much?
Will anti-HIV drugs interact with other drugs?
Do I need to be careful about drinking or taking recreational drugs while I am on treatment?
What if I think I am pregnant or want to conceive?
Do these drugs need to be refrigerated or kept in a special container?
Can I take my drugs on holiday?
Can I drive a car or operate machinery while taking these drugs?
How can I get further information about this treatment?

Adherence tips

Adherence means taking your pills in the prescribed doses at the right time, in the right amount and in the right way. Missing doses or not taking doses correctly can lead to HIV becoming resistant. This will cause your treatment to fail and limit the drugs available to treat you in the future. Taking your drugs too late or too early can be as bad as not taking them at all.

A high level of adherence is needed for your HIV treatment to work effectively. You should aim to take every dose.

If you are taking once-daily treatments, 95% adherence means missing no more than one dose a month.
If you are taking your treatment twice a day, 95% adherence means missing no more than three doses a month.
If you are taking your treatments three times a day, 95% adherence means missing no more than four doses a month.

You will need to spend time with your healthcare team working out what kind of things help or prevent you adhering.

Simple forgetfulness is a common reason for missing doses of anti-HIV drugs. Here are some simple measures, which may help you remember:

Practice beforehand by taking sweets or multivitamins for a few weeks in the same quantities and at the same time as you will have to do when you start your anti-HIV drugs regime, taking account of any dietary restrictions.
Keep a diary of which pills to take when, and at what times to eat or avoid food. Ask your doctor or pharmacist to provide a written daily schedule with your prescription, which you can tick off after taking your dose. Some pharmacists offer stickers for medication containers, which have the same function.
Ask your pharmacist for a partitioned container that you fill with the individual daily doses once a week or every few days. Make sure that you check with your pharmacist that all your drugs are suitable for storing out of their original container.
Keep your medication in a place where you will remember to take it. Some people keep doses in different places depending on where they could be at the time they need to take a pill.
Develop a routine so that you remember to take the drugs at the same time each day e.g. when you get up and go to bed; at mealtimes; at work and at home.
Set an alarm on your mobile phone or watch to ring when you doses are due.
Keep a bottle of water in your bag, so you can take your treatment wherever you are.
The first few weeks on a treatment are often the most difficult. Think about how you can make it a priority during this time e.g. by taking time off work to adjust.
Plan for weekends, holidays or other times when you don’t have your usual routine. Make extra efforts to remind yourself, and if appropriate, ask the people you are with to remind you.
If you don’t want people to see you taking your treatment, excuse yourself to go to the toilet or make a phone call.

You will find more help and information at http://www.aidsmap.com/files/file1000882.pdf

When and why you may want to change HIV treatment

The latest British HIV Association (BHIVA) treatment guidelines recommend that if your viral load has previously been undetectable and rises above 400 copies/ml on two consecutive tests that should be a trigger to think about changing treatment. However, the decision about when and whether to change will also depend upon what drug options are left open to you.
If your CD4 count is unstable and falling close to or below 200 cells/mm3, there is a strong argument to change regimens.
You may also want to change from a regimen which is successfully suppressing HIV if you are unable to tolerate it due to side-effects, or you are unable to take the medication as prescribed, or both.
You may be on a regimen that is no longer recommended by the latest BHIVA guidelines, for example, if you are on your first combination and it contains d4T (stavudine, Zerit) or you are on less than three drugs.
If you have recently become co-infected with hepatitis B or hepatitis C viruses, you may need to change your therapy.
Your chances of achieving and maintaining undetectable viral load tend to get smaller with each new combination that you take, because of the development of drug resistance. However, undertaking a resistance test before switching therapy should help exclude drugs, which are unlikely to work.
A full review of the causes of treatment failure should happen before any change in regimen, including a review of adherence.

If you need to change your treatment you will need to work closely with your HIV doctor. On no account you should you stop treatment suddenly as this may lead to the development of drug resistance, which will make future treatment more difficult.

If you speak to your doctor he can advise you on how to stop the treatment in a safe way. For example you may need to stop taking one drug now, but continue with two others for another week. This may prevent drug resistance.

Before you switch, make sure you know about any side effects associated with the new drugs. There is no point in changing treatment if the new drugs are even harder to take. You should also be aware that it is normal to change all the drugs in the combination, not just one or two.

Keeping yourself up to date

Understanding HIV and its treatment means a longer healthier life. Keeping up to date on treatment issues will help you talk to your doctor and make decisions about your health and treatment.

You can keep up to date by signing up for HIV Weekly – an email digest of the latest HIV news. Details can be found at http://www.aidsmap.com/en/main/emailupdate.asp

ACET’s Information Centre also has a wide range of free booklets and fact sheets on HIV treatment and associated issues.

Last updated April 2010