Consider How HIV Treatment Fits Into Your Life
Part Two of Three in Project Inform's "Considering Treatment and Your Health Care" Booklet
It can be hard to take medicines and stay on them when you're feeling well. It's easier to remember and take them when you feel sick. Studies show that even doctors have a hard time staying on a short course of medication, such as antibiotics. But HIV meds are taken every day -- whether you feel good or feel bad.
It's difficult to fully comprehend the meaning of "lifelong" treatment, but once you start HIV meds you need to stay on them. How do you feel about taking pills every day, perhaps for life? Have you taken other medicines or vitamins long-term? How about family or friends? What were their experiences?
Do you feel confident that starting now is right for you? What makes you feel that way? Or, are you anxious or worried? Have you talked to your doctor about your concerns? Have you seriously considered all the risks vs. the benefits?
You may want to avoid starting meds before major life experiences like going on vacation, moving or starting a new job, since adjusting to several changes at once can be harder. What support and flexibility do you have with commitments like caring for children or volunteering? How will you carry your meds?
In the end, it's generally better to not start until you're ready rather than to start and stop. You're the expert on when you can start in a way that helps ensure your quality of life.
For many, privacy is an important consideration when taking HIV medicines. Taking medications on time every day or going to regular doctor visits may raise suspicions of some people in your life. Discrimination or disapproval from others can make it challenging to take care of yourself. When possible, discretely telling people who support you may help you stay healthier. Family, friends, a counselor or support groups are options.
HIV meds have not been studied as much in women. Some questions remain about the doses given to women. Female hormones may also affect HIV meds. However, the recommendations for when to start and what to choose are generally the same for both sexes. Women who are not pregnant, planning to become pregnant, breast-feeding or taking hormonal birth control can follow the same guidelines as men.
Women generally experience both a higher rate and different types of side effects from HIV meds than men, likely due to differences in their weight and body size. Side effects can persist longer for women than for men, but may decline over time.
Oral contraceptives can interact with some HIV meds. It's not clear whether this actually raises the risk of unintentional pregnancy, but some experts recommend that prescriptions should be changed or other forms of birth control should be used.
With careful planning and ongoing care, pregnant women can expect to have a safe pregnancy and to give birth to an HIV-negative baby. The US Guidelines recommend that all pregnant women be on treatment to protect themselves and their unborn babies, though HIV meds have not been well studied in pregnant women. Some meds appear to be safer, some can be more problematic, and a few others should not be used at all. When making decisions around pregnancy, delivery and nursing, it's wise to consult an HIV-experienced doctor, such as an OB-GYN.
Early in your care, your doctor should talk to you about which vaccines are appropriate. This is an important step since some infections can lead to diseases such as hepatitis A or B or the flu. It's better to prevent these in the first place rather than having to treat them along with HIV.
Your doctor should fully investigate your medical history and run blood tests to check if you've already been exposed to certain infections. Some vaccines are taken only once and others may need a booster shot, while flu vaccines are taken each year.
In general, HIV-positive people should not get what are called live attenuated vaccines. These are made from weakened living organisms and could possibly cause serious problems. One example is the seasonal nasal vaccine for the flu, called FluMist. HIV-positive people should not use this nasal vaccine.
The safest type of vaccines for HIV-positive people are ones called subunit or conjugated vaccines. These are made only from pieces of a virus or bacterium and therefore can't cause disease. To make sure, you can ask before getting vaccinated: Is this the right vaccine for me since I'm HIV-positive?
Vaccines work best at higher CD4s (above 200), so it may be better to wait until your immune system has recovered so they have a better chance of protecting you. If you get blood work done soon after a vaccine, your viral load and/or CD4 count may fluctuate. They should return to normal by your next blood draw.
CLICK HERE for the US Recommended Immunizations for HIV-Positive Adults, updated January 2009.
All HIV-positive people should get a full physical exam and medical history after their diagnosis, including screening for current infections or conditions such as hepatitis C or hypertension. Treating both HIV and other conditions at the same time requires more consideration, so it's best to know about them as soon as possible.
IRIS (Immune Reconstitution Inflammatory Syndrome)
IRIS is a serious condition that can happen shortly after starting HIV treatment, especially at low CD4s. As the immune system begins to recover, it can respond aggressively to other infections that may or may not have been known before starting HIV meds. Symptoms can include fever, swollen lymph nodes, lesions, rashes, changes in breathing, pneumonia and hepatitis. It's important to report these symptoms to your doctor quickly. In most cases, IRIS can be managed without stopping HIV treatment.
Hepatitis C (HCV)
There is no vaccine to prevent hepatitis C, and 1 out of 4 people with HIV also have HCV. Many do not know they're infected; therefore, it's important to be screened. The virus most often is passed through blood, usually when sharing needles. But it can also be passed through sex, most likely when blood is present in sexual fluids. HIV infection can make hepatitis C worse, and certain HCV strains are harder to treat. It's unclear whether hepatitis C makes HIV worse. Treatment can be difficult to tolerate and is successful in about 2 out of 5 people. However, newer drugs are expected in 2011 which increase the cure rate to 3 out of 4. Seek experienced doctors when making decisions about treating hepatitis C and HIV.
Hepatitis B (HBV)
Nearly 1 out of 4 people with hepatitis B may develop chronic disease; a smaller proportion will develop serious liver problems like cirrhosis. An HBV vaccine will prevent infection in most people. The US Guidelines recommend that co-infected people who need treatment for their HBV should start HIV drugs. Three HIV meds are active against hepatitis B: Viread (also in Truvada, Atripla), Emtriva (also in Truvada, Atripla), and Epivir (also in Combivir, Trizivir). At least one of these should be used as part of the HIV regimen.
Diabetes is common among the general public, and many don't know their risk and go undiagnosed. Women may also develop diabetes during pregnancy. Type 2 diabetes is usually seen as people age, and there's a higher rate of it in HIV-positive people. It's important to be screened before starting an HIV regimen. Some HIV meds, such as protease inhibitors, can contribute to the condition to some degree. It's possible to manage both diabetes and HIV disease, given the various medicines used for both.
HIV infection can contribute to diseases of the liver, kidney, heart and other organs. The risk depends upon several factors, such as genetics, your general health, co-infections and lifestyle issues like smoking. HIV meds can also contribute to organ disease, so it's important to know your risks before starting a regimen. For instance, if you have kidney disease, it may be appropriate to avoid Viread, Truvada and Atripla. If you have heart disease, you may want to avoid Ziagen. Other ways that may help include eating healthfully, exercising and stopping smoking.
Many HIV-positive people have lower than normal bone mass and are more likely to experience bone loss, perhaps due to HIV itself or ongoing inflammation. However, this doesn't appear to result in a higher risk for fractures or breaks. Certain HIV meds, especially protease inhibitors and NRTIs like Viread, may also contribute to bone loss. Some studies find that this loss levels out within a year or two, but others show continual loss during long-term treatment. Bone density screenings can show existing bone loss. Vitamin D and calcium supplements may help prevent bone problems, and prescription medicines could also be used.
Using HIV medicines with herbal products, supplements or recreational drugs can sometimes cause serious interactions. It's wise to understand this issue and discuss it with informed professionals. These interactions are not routinely studied, so much of what we know comes from people talking to their doctors or from cases seen in emergency rooms.
A few supplements are known to affect the blood levels of HIV meds. For example, St. John's Wort, garlic supplements and perhaps milk thistle may cause your regimen not to work as well as it could. You may want to speak to your doctor, pharmacist or a trained nutritionist on ways to avoid unwanted interactions.
Using recreational drugs such as ecstasy, ketamine and others along with HIV meds may cause severe reactions, such as drug-induced hepatitis, heart attacks, paranoia and death. [For example, using erectile dysfunction drugs (Viagra, Cialis, Levitra) with protease inhibitors can cause severe low blood pressure and death.]
Whether you decide together with your doctor to start HIV treatment or wait, there are other steps you can take to improve your health and quality of life. Many people have found that as they adjust to living with HIV, their diagnosis can become a catalyst for seeking help and taking charge of many aspects of their lives.
It is also true that life challenges and health issues such as "street drug" abuse, alcohol abuse, domestic violence, mental health issues and homelessness can be very difficult to face on your own. Building a support system of people you trust can be an essential first step. Social services, support groups and supportive friends and family can be very helpful as you pursue bringing more health into your life.
Support groups for all types of issues (including HIV) can improve an individual's health. Being able to tell your story to people who understand can be very healing and such groups are rich with advice about how to deal with the issues you face. Although AIDS service organizations are more plentiful near cities, no matter where you live you can usually find case managers, social workers or peers who can help connect you with local services that can help you with the issues you face.
This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
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