Treatment

TREATMENT AND CARE: CHOOSING YOUR HEALTH CARE PROVIDER MONITORING HIV TREATMENTS

HIV treatments are made up of combinations of (usually three) HIV antiretroviral drugs. These treatments are very effective at stopping HIV from reproducing, which keeps the immune system strong so it can fight infection. Treatments reduce and often prevent long term health issues related to HIV. Treatments today are much easier to take, with far fewer side effects than in the past.

HIV treatments come in different ‘classes’, each of which works in a different way to make it difficult for HIV to multiply. There is a range of different drugs in each class. While drugs in the same class share characteristics, there are also differences. For example, some are more effective at stopping HIV replication, some may inhibit HIV entering cells, while others are less likely to trigger certain side-effects.

HIV treatments used to involve multiple doses of different drugs taken at specific times each day (some before and some with food), which often meant complicated medication schedules. For most people, such complex drug routines are a thing of the past. Although most people now take a combination of three drugs from at least two drug classes, separate treatments are often co-formulated and combined into a single pill to reduce the number of pills people need to take. Many people with HIV now take their HIV antiretroviral treatment in a single pill each day. Your doctor may also prescribe other prophylactics: drugs or precautionary measures to prevent you developing opportunistic infections or other medical complications.

HIV antiretroviral treatments are subsidised by the government under the PBS (Pharmaceutical Benefits Scheme), although most states and territories include a ‘co-payment’ where you pay a small portion of the full cost. If you find yourself under financial stress, there are financial assistance programs for people with HIV. Contact your local AIDS Council or PLHIV organisation for information. If you do not have a Medicare card you will still be able to access ongoing HIV health care. Your HIV doctor will be able to assist you to get access to HIV treatments. For general information on accessing treatment without Medicare, check out AFAO’s Next Steps website.

HIV treatments may also be available through clinical drug trials which aim to assess the effectiveness and safety of new drugs or new ways of using currently available drugs. Ask your health care provider if you are interested in this aspect of care.

STARTING TREATMENT

Starting Treatment

HIV treatment recommendations used to be based firmly on a person’s CD4 count but that is no longer the case. HIV treatment is now recommended for all people living with HIV, irrespective of CD4 count, as research has shown that starting treatments sooner rather than later is beneficial to your health. Treatment also reduces the likelihood of onwards transmission of HIV. The question of ‘when to start’ treatment now really depends on your own readiness.

Starting antiretroviral therapy is a serious commitment because once you start, you will need to take treatments for the rest of your life (treatment breaks are not recommended). You may also experience side-effects, although these are usually mild and short term.

If you haven’t started treatment, it’s important you take whatever time you need to decide when and how you want to start. Some people start treatment as soon as they are diagnosed. Others wait a little longer but be aware, if your CD4 count drops below 500, starting treatment may become a matter of considerable urgency.

If you are worried about possible side-effects, you could ask your doctor whether it would be useful to make specific plans (like having a few days at home for short term side-effects) or have some simple remedies on hand (like anti-nausea or anti-diarrhoea medication) when you start treatment.

If you are worried about remembering to take your treatment at the right time each day you might like to talk to your doctor or your PLHIV organisation about when and how you would need to take it, and then work out how to fit it into your life so it becomes routine, e.g. with breakfast each day, just before bed, etc. If you don’t think you can manage a regular schedule of treatment right now, you can talk to you doctor about what you might need to change or organise so you’ll be able to take treatment in the future.

To work through some of the main issues people consider when thinking about starting treatment, check out Living Positive Victoria’s HIV Treatment Myths and Misconceptions resource.

DECIDING WHAT TO TAKE

Deciding what to take

Sometimes deciding which treatments to take can be a little complicated and confusing. If you’re on treatment, it remains important to review your treatment regularly to ensure you are taking the combination of antiretroviral treatments that work best for you. Treatments are likely to change over time influenced by factors like:

your general well-being
changes in your viral load or CD4 count
any other illnesses
side-effects
age
lifestyle
the availability of new treatments and new approaches
your attitudes to medicine

Treatments aim to get your viral load to an undetectable level, however that is not always possible. If you are one of those people struggling to get an undetectable viral load — do not blame yourself! You are certainly not alone.

Deciding on the best type of treatment may seem overwhelming. Doctors may say one thing while other positive women, friends or family may say something else. This really is a decision for you based on how you think you can best manage the scheduling and any possible side-effects of specific treatments. Everyone is affected by HIV differently, so your HIV specialist should work with you to tailor and monitor a treatment program specific to your needs.

Some treatments can affect a future pregnancy so if you are thinking about getting pregnant, you should talk through your HIV treatment options with your doctor so your treatment can be planned with pregnancy in mind. See pregnancy.

Remember, you do not need to ‘master’ the science of HIV: that is the job of your doctor. But if you want to know more, check out NAPWHA’s Treatment Database or the Antiretroviral Agents Adult Dosage Chart on the AFAO website. It can also be useful to talk to people at your local PLWHA organisation or AIDS Council.

SIDE EFFECTS

Side-Effects

Any drug can cause side-effects but not everyone gets side-effects from their HIV treatments and not everyone experiences the same side-effects. It’s hard to estimate how often people have specific side-effects, but headaches, nausea and diarrhoea are not uncommon. In the vast majority of cases, these side-effects are manageable and often decrease after the first month or so. Adverse reactions can also occur if your immune system reacts badly to a drug. These symptoms are usually a rash and/or fever. Such symptoms will usually resolve themselves but if you develop a rash when beginning a new drug, seek medical advice. Some people develop side-effects over time, like abnormalities in liver function or (rarely these days) abnormal redistribution of fat throughout your body. Importantly, most people living with HIV are side-effect free.

Complementary Therapies

If you experience any side-effects, your doctor may prescribe other medicines (like anti-diarrhoea or nausea medications) to help you deal with them. Many people report complementary therapies or dietary changes are also useful in controlling side-effects. Just be aware, some complementary medicines interact negatively with HIV treatments so let your doctor know if you are taking any herbs, vitamins, traditional Chinese medicines or other complementary medicines. Your doctor can refer you to an HIV-experienced dietician if you think it may be beneficial. Of course, if you are struggling with side effects, your doctor will consider changing your treatments, aiming to identify a treatment plan that produces no side effects at all.

NAPWHA has produced a small booklet, iPlanPLUS, to help you keep track of any possible side-effects so you can talk to your doctor and ensure you’re on the best treatment combination available.

DRUG INTERACTIONS

Drug Interactions

Other prescription medicine may interact with your HIV antiretroviral treatment. Your doctor will be able to manage those interactions and tailor a specific treatment plan for you. Just make sure that your doctor is aware of all prescription medicines you are taking, whether or not that particular practitioner prescribed them. It can be useful to have a list of all drugs with you to act as a check list whenever you see your doctor.

Natural or alternative medicines, including herbs, can interact with HIV drugs (e.g. St John’s Wort). Some can also be toxic to the liver. Different people react differently to certain natural therapies, so not all natural therapies are safe for everyone or free of side-effects. Talk to your doctor about any alternative medicines you are using and talk to your complementary therapist about any HIV antiretroviral drugs you may be taking.

Hormonal Contraception (like the pill) can be undermined by some HIV antiretroviral treatment, so it can increase the likelihood of pregnancy. These drugs include non-nucleoside reverse transcriptase inhibitors — nevirapine (Viramune) and efavirenz (Sustiva), protease inhibitor drugs, and the booster drug Cobicistat. It is important to talk to your doctor to consider all possible drug interactions so they can work out the best treatment plan for you.

Methadone and other opiate substitute therapies may interact with HIV antiretroviral treatment. Treatments may reduce the effects of methadone (leading to symptoms of withdrawal) or increase the effects of methadone (causing increased sleepiness). Conversely, methadone may work the same as usual but it may increase or decrease the effects of HIV treatments and cause unnecessary side-effects. HIV treatments that may interact include nevirapine, efavirenz, ritonavir, nelfinavir and lopinavir/ritonavir.

Fortunately, negative effects of any drug interactions can be managed by adjusting the dosage of methadone and/or HIV medications. If you are concerned about drug interaction, talk to your doctor as soon as possible so they can work out the optimal therapy for you. Do not stop taking HIV treatment without talking to your doctor.

SIDE EFFECTS

Adherence – Taking the drugs

Taking your treatment as prescribed (adherence) is very important. If you do not, the virus may develop resistance to your treatments which allows HIV to become stronger and also reduces future treatment options. Missing doses regularly means the virus could escape the control of the drugs and it may also affect your health.

Every time HIV reproduces there is a chance it may ‘mutate’ or change slightly. The more the virus reproduces, the more chance of mutations occurring. In theory, these mutations can make the HIV more resistant to individual drugs or sometimes to a class of drugs but this does not happen commonly unless a person misses pills or doesn’t take their treatment regularly.

It is important to take the full dose of each drug as prescribed. This allows the drugs to be maintained at a consistent level so they can work against the virus at maximum capacity. If you are having difficulties taking a certain drug because of side-effects or dose requirements, talk to your doctor about changing to a combination that suits you better and is easier to remember. It is better to change treatments than to stay on a combination that doesn’t suit.

There are many ways to remember to take your drugs on time. You could experiment with some of these:

Take your drugs at the same time each day.
Establish a routine which associates pill-taking with meals where appropriate.
Use a medication sorting box which lets you set out your pills for the week in labelled sections so you can easily see what you have taken and what you need to take next. These are available from chemists. Camping supply shops also sell small plastic jars that can be useful for storing backup doses.
Use your phone or calendar to set an alarm or reminder notice.
Use a calendar or diary in a prominent place at home or work on which you can tick off each time you take your pills.
Keep a backup dose in a portable pill container in your bag for when you are not going to be home. (Just be aware that medications expire so swap over your spares from time to time.)
In case you’re not at home, have extra supplies of your drugs at other places where you know you’ll be, e.g. partner’s house, work, etc. (Again, keep an eye on expiry dates.)
Prepare for travel or holidays by getting a stock of drugs in advance. Always take extra in case you experience travel delays. If flying, always pack your medicine in your carry-on hand luggage. Plan ahead to adjust your treatment schedule for different time zones. For more information on travelling with HIV, see Should I Travel?
Get tips from other people with HIV about how they remember to take their pills.
Do not keep treatments at home if you are no longer taking them. Return them to your usual pharmacy where they can be disposed of appropriately.
The National Prescribing Service has a handy phone App which can record the names of your medications. It will also answer questions (by email) about drug interactions. This can be particularly useful if you have been prescribed something by a doctor who is not aware of your HIV and any HIV treatments you are taking.