Of the many challenges faced by people living with HIV, one of the most difficult is keeping up to date with important information about the treatment and day-to-day management of HIV. New information about the treatment and science of HIV becomes available on a daily basis. Staying current with information sometimes seems overwhelming.
The following tips have been identified as among the most important things people with HIV need to know about managing their health and well being. Of course this list is not exhaustive, it is just a guide and a trigger for you to find out more information if appropriate.
Get a doctor who is easy to talk to, explains things clearly and has managed HIV before.
You can get advice about finding a good doctor from Body Positive or your local PLWHA organisation.
02Give Up Smoking
If you smoke, then quitting is the single most effective way to improve your health. Smokers who are HIV positive are much more likely to develop many of the conditions linked to smoking than those that are HIV negative, with most of these conditions rarely occurring among non-smokers. Men who smoke are also more likely to have erection problems.
People with HIV are at significantly increased risk of heart disease, with HIV infection and treatments for HIV already contributing to this increased risk. HIV-Positive smokers are also at increased risk of different kinds of cancer.
Smoking can also weaken your overall immune system placing people with HIV who smoke at greater likelihood of getting some opportunistic infections and AIDS-defining illnesses.
For more information about these and other specific effects of smoking on people living with HIV, contact your doctor or Body Positive. Your doctor can also speak to you about the options that are available to help you give up smoking.
03Diet and Exercise
People with HIV can get early heart disease and other diseases such as diabetes. Maintaining a healthy weight for your height is important to prevent illnesses such as these.
A good way to do this is to eat a well-balanced diet low in saturated fats (eg animal fats, coconut and palm oil) and do 30 – 60 minutes of exercise (such as walking, swimming or cycling) each day. It is also good to eat more unsaturated fats, mainly plant based oils (eg olive oil, peanut oil, sunflower oil) and fish.
A general multivitamin may be helpful if you are not having a well-balanced diet, but it cannot replace eating well.
You can also reduce some of the side effects of HIV treatments through the types and timing of foods that you eat.
Check with your doctor before commencing any complementary therapies as they can interact with your HIV treatments.
Speak to your doctor or a HIV dietitian for more information.
Heavy drinking can further suppress your immune system and may slow down your recovery from infections.
Heavy alcohol use can also have potentially serious consequences for people taking HIV medications and may affect how well you adhere to you HIV medications.
A healthy liver is important to process medicines effectively, so if your liver has been damaged by drinking too much alcohol, you are more likely to experience side effects from HIV medications (especially if you have hepatitis). The blood fat increases caused by some HIV medications can be made worse by heavy drinking.
If you have hepatitis or high levels of blood fats, you may have to stop drinking alcohol or cut down alcohol consumption.
Alcohol use can be a factor associated with taking more risks during sex. Be aware of your limitations and protect yourself and your partners from HIV and other infections.
Recreational or party drugs can harm your health. The effects can be harmful for both the short and longer term. Crystal/Ice use can damage your brain.
Some drugs interact with HIV treatments, leading to treatments that don’t work as well or have worse side effects. The use of Ecstasy, Crystal/Ice and other types of methamphetamines may cause dangerous, even fatal interactions with some types of HIV medications, as the HIV drugs slow down the body’s elimination of recreational drugs.
Using Ecstasy, Crystal/Ice and other types of methamphetamines and other party drugs is likely to further suppress your immune system, making it more difficult for your body to fight off disease. In addition to the drugs, the partying lifestyle itself can weaken your immune system. Staying up for long periods of time, not eating enough, or not eating the right foods can damage the immune system of any person, even if they are in great health. Methamphetamines and ecstasy can also make eating difficult, which can be a problem for people who need to take treatments with food.
If you are on HIV treatments and use recreational drugs, you could try to avoid taking HIV treatments and other drugs at exactly the same time and wait at least a couple of hours between doses. Drink plenty of water, and start with a smaller amount of any illicit drug and monitor any unusual responses. Seek emergency medical help if you experience any severe or unexpected effect.
Recreational drug use can be a factor associated with taking more risks during sex. Be aware of your limitations and protect yourself and your partners from HIV and other infections.
06Other Medicines & Therapies
Prescription drugs, over-the-counter drugs and complementary therapies can all interact with HIV treatments, and affect how well both the HIV drugs and other treatments can work. This includes the contraceptive pill and implants for women, with some HIV medications making the pill less effective as a contraceptive.
Tell your doctor what other drugs and therapies you are taking.
07 Starting Treatments
If you haven’t started treatments yet, speak to your doctor about the current guidelines for starting treatment. At present, medical advice is guiding patients to start earlier than previously. The booklet ‘HIV Tests and Treatments’ provides detailed information on the HIV treatments that are currently available, as well as some common tests used to monitor the health of people with HIV, and how these tests can be used to help you look after your health, or make decisions about starting HIV treatments.
Any treatment decision needs to be discussed fully with your doctor, taking into account how well your body is managing HIV as well as your ability to incorporate taking treatments into the way you live.
08Treatments & Side Effects
Side effects are the most common difficulty associated with HIV treatments. But there are ways to reduce them. Get advice about diet and other ways to help reduce side effects from your doctor or a HIV dietitian.
Speak to your doctor to stay aware of new medications becoming available. Even if your current combination of drugs are working and controlling your viral load, there could be newer treatments that could still achieve this but could also be more convenient to take, have fewer pills per day and offer fewer side effects.
Always take your HIV treatments exactly as prescribed.
If you don’t, there’s a risk your treatments will not work and your HIV will become resistant to these drugs and other related drugs, and become harder to treat.
Don’t stop or disrupt your HIV treatments without talking to your doctor first as some medications have to be stopped in particular ways.
You will be more likely to get an opportunistic infection or develop an AIDS-defining illness if you take a treatments break.
You could consider changing to different drugs instead.
Always talk to your doctor before you make any decisions about your treatment.
For more information about the importance of treatment adherence, speak to your doctor or contact us.
To manage HIV well, it is important to keep track of the virus and your body’s immune function.
See your doctor every 3 months to monitor your viral load and CD4 count.
Usually a whole range of other tests are also done to monitor for possible drug side effects and potential organ damage.
These monitoring tests may influence decisions to commence or change your HIV treatments. Discuss any treatment decisions with your doctor.
This is also be a good time to discuss other areas of your health with your doctor, including your diet and exercise routine and monitoring of other health factors, as well as about how you are feeling.
The booklet ‘HIV Tests and Treatments’ provides detailed information on some common tests used to monitor the health of people with HIV, and how these tests can be used to help you look after your health, or make decisions about HIV treatments.
Use condoms with a water-based lubricant to avoid passing on HIV and protect you and your partners from some STIs. There is a very low risk of passing on HIV through oral sex, but using a condom or dental dams will also protect you and your partners from other STIs.
Accidents can happen.
If you think you may have exposed another person to HIV, find out if they are eligible for PEP treatment to prevent HIV infection taking hold.
PEP (post-exposure prophylaxis) must be started within 72 hours of exposure, but within a few hours is best.
For more information about PEP and if it is available, call your doctor or contact us.
13Viral Load & Infectiousness
HIV is still present if you have an undetectable viral load, just in very small amounts unable to be accurately measured by current blood tests.
It is possible to have a low or undetectable blood viral load, but higher levels of HIV in other body fluids such as semen, vaginal fluids and the fluid lining of the rectum and anus. This would increase the chance of passing on HIV to your partners.
While research suggests an undetectable blood viral load reduces the risk of passing on HIV, it has not yet been proven to completely eliminate the risk. Having an undetectable viral load result at your last test is not a substitute for safe sex.
14 Secondary Infections
Having another infection when you are HIV positive places further stress on your immune system as well as make the other infection more serious.
If you have a sexually transmissible infection (STI) as well as HIV, then both the STI and HIV can be easier to pass on to your partners. Some STIs can also increase your viral load and decrease your CD4 count. Get regular STI check-ups (blood and urine tests as well as throat, vaginal and anal swabs). Many STIs do not have symptoms.
Hepatitis C is also of significant concern for people with HIV.
If you and your partner are HIV positive and do not use condoms, there is a possible risk of being exposed to a different strain of HIV. Being infected with a different strain (reinfection or superinfection) can limit your treatment options. Speak to your doctor or contact us for more information.
Hepatitis C is mainly spread through sharing injecting equipment, but it can also be spread through sex without a condom and particularly sex that draws blood.
Having HIV and Hepatitis C can accelerate the progress of both infections and make both more difficult to treat.
If injecting, do not share any needles or equipment, including spoons and tourniquets. During sex, wash hands and toys and change condoms and gloves between partners.
16STI Diagnosis & Treatment
If you have sex, ask your doctor for STI tests (blood and urine tests as well as throat, vaginal and anal swabs) as part of your regular HIV monitoring. STI tests don’t happen automatically when you go to your doctor.
Many STIs do not have symptoms, so it is important to have regular STI tests.
Some STIs, such as syphilis, are serious and hard to treat if you have HIV.
Choosing who you may want to tell that you are HIV positive, including family and friends, can be a very difficult decision for many people. In deciding who to tell you might find it useful to think about who you can trust with the information that you are HIV positive, as well as if they will offer you support and respect your confidentiality.
You do not have to disclose your HIV status to your friends, your employer or your work colleagues. You also do not have to disclose your HIV status to every doctor, dentist or other health professional. It is wise however, to tell health professionals you are seeing for other conditions that you are positive so that they have a clear picture and can help you make decisions about your health.
There is no easy way to tell your partner, or partners, and no set rules – regardless of your partner’s HIV status. It can help to have a counsellor who is experienced in working with HIV issues available to help you when and if you decide to tell your partners.
Although you are not obliged to tell anyone your status, the law may require you to tell people under certain circumstances.Click here for further details.
There are vaccinations available for several other infections. These infections can cause more rapid progression of the infection in people with HIV, difficulties with adherence to HIV treatments, as well as have an impact on HIV itself.
Speak to your doctor about getting vaccinated against
Flu (yearly vaccine)
Ask your doctor if other vaccinations might be an option for you, such as for the human papilloma virus (HPV), the virus that causes warts (though this may not be effective if you have already been exposed to HPV).
People with HIV can be at higher risk of certain types of cancer.
For men who have sex with men, cellular changes in the genitals and anus, including those caused by the human papilloma virus (HPV), the virus that causes warts, sometimes lead to anal cancer. This is more common in HIV-positive men and especially those with a low CD4 count. Men over 40 should particularly talk to their doctor about getting an anal cancer check.
For women, abnormalities in cervical cells, including those caused by HPV, and cervical cancer can occur regardless of HIV status. They are more common in women with HIV, and can be more invasive. Women with HIV should get a pap smear every year.
Speak to your doctor for more information about these and other types of cancer you may be at higher risk of, and if a vaccination for HPV would be effective for you.
Having HIV and the side effects of some HIV medications can both affect your dental health, including reducing the amount of saliva in your mouth which can lead to tooth decay.
There is also an increased likelihood of gum disease, particularly during the early stages of HIV.
Emotional factors such as stress and anxiety, nutritional factors, as well as some HIV medications can cause a higher likelihood of teeth clenching and grinding. This can cause wearing of the teeth and make teeth sore and sensitive.
It is important to see your dentist every six to twelve months to monitor these and other conditions so they can discuss prevention and treatment options with you.
HIV brings changes and challenges, but it’s a virus, not a lifestyle. There are many things you can do to help yourself manage these challenges. Talking to a counsellor can help, or there are organisations that offer courses to help you develop coping skills, including on-line courses. Your doctor or Body Positive can assist you to find the best way for you.
A good social support network can also be helpful.
Depression and anxiety are experienced more commonly by people with HIV, and often symptoms are not obvious. Each time you see your doctor, let them know how you are feeling. They can discuss the available support services and treatment options with you if required.
Support from family, friends and other people in the same boat can really help.
Build a support network and stay in touch.
Body Positive offer a range of opportunities for HIV positive people to build friendship networks, meet people and share information to enhance your health and well-being, including workshops and social events. Contact us for more information on these and to find out where you can meet other people with HIV.
If you are planning to travel overseas, there are many countries that place varying levels of travel restrictions on HIV-positive people.
Many insurance providers require you to disclose HIV as a pre-existing medical conditions, including when you apply for travel insurance, and make assessments on a case by case basis. Several insurers will provide travel insurance to people with HIV with an extra charge.
It is important to plan to have enough of your medications for your trip to avoid any treatment breaks. Ask your doctor for a letter stating that it is prescribed medication for personal use.
Pack plenty of condoms and lube. They may not be available in the countries you are travelling to or their quality may be poor. Remember to pay attention to your diet and especially the water you drink to avoid diarrhoea and other illnesses.
If you are planning on travelling, speak to your doctor about the vaccinations you can have and leave plenty of time to get them.
Click here for more information about travel restrictions for HIV-positive people and other issues about travelling overseas.
24Finances & Planning
Managing your health as well as your finances can become challenging for many HIV positive people. If you are find you are experiencing financial difficulties Body Positive may be able to help.
Organising things such as insurance, including life insurance, and a will or an enduring power of attorney is something that everyone should do, and there are organisations that can help you with these as well.