Positive Life NSW

If your doctor has suggested that you consider starting combination therapy then this fact sheet is for you. Taking three or more different anti-HIV drugs, known as combination therapy, is the best way to decrease the amount of HIV in your body. This requires planning, as each drug needs to be taken strictly as prescribed, usually twice a day, sometimes with or without food. This fact sheet describes some lifestyle changes and daily routines that will help you integrate combination therapy into the way you live.

1. The best combination for you

There is no perfect anti-HIV drug combination for everyone. All combination therapies have their advantages and disadvantages. The best combination therapy is one that works for you. Some combinations are more complicated to take than others, so choosing a combination that is easier to fit into your lifestyle is important. Before starting combination therapy, discuss with your doctor and ACON's Treatment Information Officer how to fit the dosing instructions into your lifestyle.

Before you start treatment find out as much as you can about choices you have. You don't usually have to make an immediate decision. You have time to think about it first.

ACON's Treatment Information Officer supports you in your treatment decisions by providing accurate and up to date information about treatments for HIV and for illnesses that are associated with HIV infection.

2. Why is it important not to miss doses?

The goal of combination therapy is to reduce the amount of HIV in your blood to an undetectable level and thus preserve your body's ability to fight infections, but it only works if you follow the dosing instructions and don't miss doses. Sticking with your dosing instructions is called adherence.

For the drugs to work, and for their effects to last, they must be present in the body at high enough concentrations to keep HIV suppressed. Therefore it is important to take the doses at the same time every day, though an hour or so either way is okay.

3. Resistance and medication

If you miss doses, you give HIV a chance to develop drug resistance. This means that HIV has mutated, which may allow it to escape control of the drugs. Drug resistance can limit your future treatment options. Just two missed doses per month, on a regular basis, increases the chance that the drugs will stop working.†

† Paterson DL, Swindells S, Mohr J et al. Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann Intern Med, 2000; 133: 21–30.

4. How do I know if the drugs are working?

The amount of HIV in your blood is measured using a viral load test. After you start treatment, your doctor will use viral load tests to make sure that the amount of HIV in your blood, known as your viral load, is going down. This indicates that the drugs are working.

The other test that your doctor uses is the CD4 count (also called a T-cell count). CD4 cells are white blood cells that play important roles in the immune system. HIV is able to attach itself to the CD4 cells, allowing the virus to enter and infect these cells.

A fall in your CD4 count and an increase in your viral load would be a sign that your treatment is not working and you should consider switching to a new combination.

You will probably be advised to have a viral load test and CD4 count four to six weeks after starting combination therapy, and then every three months to make sure the drugs are working.

To get the most from your combination therapy and to prevent treatment failure:

• Ask your doctor, pharmacist or Treatment Information Officer for information about your drugs, including whether there are special dietary requirements which help your treatments work best.
• Like all medicines, anti-HIV drugs can cause side-effects. Ask your doctor, pharmacist or Treatment Information Officer to explain what side-effects you can expect, including mild ones which wear off, and serious ones which you should report to your doctor straight away.
• If you are frequently forgetting to take your medication, or are not taking them because of side-effects, it is important to let your doctor know as soon as possible. You can get support and work out a treatment schedule which suits your lifestyle or that you are better able to tolerate.
• Don't change the doses of your drugs without your doctor's advice.

If you find you can't stick with one combination therapy because the drugs are giving you bad side-effects, there might be others that don't. It's important to talk to your doctor, clinic staff or ACON's Treatment Information Officer about different treatments.

5. Becoming forgetful?

If you notice that you start forgetting your pills it is important that you act on it. Talk to your doctor, Treatment Information Officer or a HIV Support Worker who can help you plan your adherence schedule.

Forgetfulness can be a symptom of depression. Depression can make it difficult for you to remember dosing times. If this is becoming a problem for you, ask your doctor to assess you for depression. Depression is a common medical condition that can and should be treated.

6. Missing a dose

Sometimes missing a dose just happens despite all your efforts. Think about why you missed the dose. That way you can prevent it happening again. Take the usual dose at the next dosing time to help you to get back into the routine of correct dosing times. Don't double the dose at the next dosing time – this does nothing helpful and increases the chances of side-effects.

7. It's for the long term

You should only start combination therapy if you are committed to continuing to take it. You may need to find support that enables you to take your treatment over the long term.

8. Plan your treatments routine – how do you remember?

Taking every dose of a medication over a long period of time is possible when you make small but permanent changes to your daily routines, such as taking your medication at the same time as a regular daily event.

Planning now for how you will make these changes to your lifestyle will help you get the most benefit from your drugs.

Most HIV drugs need to be taken once or twice a day. Look at your usual routines:

• Getting out of bed
• Brushing your teeth
• A favourite TV show
• Coming home from work
• Mealtimes

Everyone has different ways of remembering. Some people use pocket-sized beepers, reminder notes, programmed mobile phones or digital watches.

Work out what method is best for you:

• Place your pills near something you use every day – next to the milk or your toothbrush. If you see them, you remember them.
• Keep a record of when you need new prescriptions – mark in your diary or on a calendar when it is time to get new prescriptions filled so you don't run out.
• Plan ahead and carry your drugs with you if you think you might be away from home at dosing time.

9. Use pill-boxes

You can buy pill boxes from pharmacies. They are small and discreet, which helps to protect your privacy when taking medication in public places. By using a pill box, you can carry a few doses with you when you are away from home without having to carry around big pill bottles. Use a film canister or Gladwrap if you can't get a pillbox.

10. Prepare answers for nosey people

If someone sees you taking drugs and asks you about it, it might help to have a few answers already prepared:

• These are vitamins
• I'm on a treatment for allergies
• They're protein pills
• This is a naturopathic treatment
• These are antibiotics for a skin condition
• Mind your own business

With a little planning you can avoid problems before they happen.

Checklist

Discuss the following questions with your doctor and Treatment Information Officer to help you choose the best treatment for you:

1. Can I be prescribed a combination of drugs that only needs to be taken once a day, and that can be taken with or without food?
2. Do any of these drugs have special food requirements?
3. Do these drugs interact with any other medications or herbal supplements?
4. What happens if I miss a meal?
5. What happens if I miss a dose?
6. How often should I have a Viral Load Test?
7. What is the location and what are the opening hours of the hospital pharmacy where I pick up my medication?
8. What are the best timers or alarms or other options to remind me when to take my drugs?
9. Do any of these drugs need to be stored in the fridge?

Help is always available, so talk with your doctor or Treatment Information Officer at the AIDS Council of NSW (T (02) 9206 2020 or Freecall 1800 816 518 from outside the Sydney area ).

Getting information and support

• Maintain good communication with your doctor.
• ACON's Treatment Information Officer T (02) 9206 2020 Freecall 1800 816 518. Call for up to date information about treatments for HIV.
• Albion Street Centre T (02) 9332 9600. HIV/AIDS, hepatitis C clinical treatment and research centre. Trials, nutrition, counselling, antibody and viral load testing. Needle and Syringe Program and pharmacy. Counsellor and doctor on call 24hrs. Hours vary. Albion Street Centre HIV/AIDS Information Line T (02) 9332 4000
• Heterosexual HIV/AIDS Service (Pozhet) T (02) 9515 3095. Freecall 1800 812 404 (national). Men and women living heterosexually with HIV/AIDS.
• Multicultural HIV/AIDS Service T (02) 9515 3098 Freecall 1800 108 098 Mon–Fri 9am–5pm. Bilingual/bicultural co-workers providing emotional support, advocacy and information to people living with HIV/AIDS from non-English speaking backgrounds.
• Positive Life NSW T (02) 9361 6011 Freecall 1800 245 677. A non-profit community organisation representing the interests of people living with HIV in New South Wales.

For Regional NSW HIV/AIDS and related services:

• Contacts. A Directory of Services for People Living With HIV. Available from Positive Life NSW. T (02) 9361 6011. Freecall 1800 245 677 or www.positivelife.org.au

For more information

Online copies available at AFAO; print versions
available from ACON or Positive Life NSW:

1. Access: A positive diagnosis, AFAO/NAPWA 1998
2. Complementary and Alternative Therapies: A Guide for People Living with HIV and AIDS, AFAO/NAPWA/ ANCAHRD 1999
3. HIV+ Gay Sex: A Booklet About Being Gay, Having HIV and Sex, AFAO/NAPWA 2002
4. HIV Tests and Treatments: Information and advice to help you make decisions, AFAO/NAPWA 2003
5. SOS Drug Guide: Surviving Our Side-effects PLWHA (Vic) Inc./AFAO/NAPWA 2000
6. Taking Care of Yourself: A Guide for People Living with HIV and AIDS, AFAO/NAPWA 2003
7. Treat Yourself Right: Information For Women with HIV and AIDS, AFAO/NAPWA 2000

Produced by the Health Promotion Unit of Positive Life NSW.

Funded by NSW Health.

Copyright © February 2003 Positive Life NSW. This information was first published in 1999 by the Victorian AIDS Council (VAC) and has been revised with their permission by Positive Life NSW 2003. This fact sheet may be copied for personal or organisational use provided you acknowledge Positive Life NSW.

This fact sheet was produced with the assistance of an unconditional grant from Gilead Sciences Pty Ltd.

This is only an extract of the text from this fact sheet; use the links at right to obtain the full content.