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Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
Now That You’ve Started Treatment (Additional PLUS Reading Materials)
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Now That You’ve Started Treatment (Additional PLUS Reading Materials)

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  1. BOOKLET 3 OF 3 HIV HEALTH & WELLNESSNow that you’vestarted treatment JANUARY 2013 your life matters
  2. Table of contentsUsing this booklet ... 2SECTION ONE: What everyone should know Be flexible with your decisions 4 Make the most of your pills and blood work 5–7 Keep up with your health care 8–9 When to switch HIV meds 10–11 Taking a break from your HIV meds 12–13 Changes in body shape 14–15 Herbs, prescriptions and HIV meds 16 When will you see a cure for HIV? 17SECTION TWO: Special situations If your sex partner(s) is HIV-negative 19–21 If you are under 25 22 If you are over 50 23–25 If you want to have a family 26–28 If you are an HIV-positive woman 29–31 If you drink alcohol regularly or use recreational drugs 32–33 If you smoke tobacco 34 If you have other conditions 35–37 HIV Health & Wellness: Now that you’ve started treatment 1
  3. Using this booklet ... Some time ago you found out you have HIV. You went to a doctor’s office and got blood work done. Then you started meds. You’ve been taking them as directed ever since. So now what? Well, simply put, your life matters. You may think that HIV is not the most important or urgent thing in your life. Many people do. But to live well with HIV you’ll need to find a balance between taking care of your own health and taking care of the other things and people in your life. Caring for HIV means more than just taking pills, although that’s a big chunk of it. It’s about eating well throughout your life, dealing with stress, staying involved with friends and family, exercising, getting sound sleep, and keeping your eye on changes in your health. Don’t think you’ll encounter everything in this booklet. We simply want you to be aware that these things are pos- sible—but not necessarily probable—for you. The first section contains information on things that everyone should know. The second describes areas of HIV that may or may not apply to you, such as family planning. In a lot ways, this booklet is about prevention. By know- ing ahead of time what things could happen, you have some control over how your health develops over the next decades of your life.2 HIV Health & Wellness: Now that you’ve started treatment
  4. SECTION ONE:What everyoneshould know
  5. Be flexible with your decisions Because your life and health change over time, the decisions that you make about your regi- men and general health may need to as well. What worked for you when you started treat- ment may not be the best fit a few years later. Treatment information changes over time; you may find you have another condition like hepatitis C; and your feelings and opinions may change. Give yourself permission to change your mind. This can help you respond to these new developments. For example, you may want to eat less sugar and lose weight in order to reverse a pre-diabetic condition. Or perhaps you start thinking you want to have a baby. Being flexible rather than rigid with your decisions can help you work better with your doctor and can help ease your worries. _______ MAIN POINTS TO REMEMBER _______ your life, such as pregnancy, a new insurance plan or a new doctor. - mation, so your decisions may change as well.4 HIV Health & Wellness: Now that you’ve started treatment
  6. Make the most of your pillsand blood workYes, we seem to talk a lotabout pills and blood work inthese booklets. But these arethe things that you’ll deal withmost. They’re also the thingsthat can help you stay healthyover many decades. At onetime or another, most peoplewho are on treatment will facethe issues listed below.“BLIPS” ON VIRAL LOADIt’s common for people to have a low, detectable result ontheir viral load tests every now and then (called a blip).Several things can cause it: you’ve had another infectionlike the flu, the test gets mishandled in the lab, or you get avaccination. Blips are usually nothing to worry about. Fol-low up with another test to see if it’s back to undetectable.CLUES TO GENERAL HEALTHPeople often focus on their HIV blood work. But it’s justas important to review your other test results, such as liverand kidney proteins, blood sugar, cholesterol and Papsmears. If these results change over time, you could developcertain conditions like diabetes or cancer. Learning what allyour test results mean—not just the ones about HIV—canhelp you feel the best you can. ... continued next page HIV Health & Wellness: Now that you’ve started treatment 5
  7. Make the most of your pills and blood work MAKE SURE YOUR MEDS GET ABSORBED HIV meds can do their job only if your body has a chance to absorb them. Getting them into the bloodstream where they control HIV has a lot to do with what you eat and drink. Talk to your provider about ways to deal with these: food to work well; others are taken on an empty stomach. stomach acid so it doesn’t break down meds as well. from absorbing meds. Taking them at different times doesn’t stop the interaction. Vomiting can too. Talk to your doctor about these issues. MISSING A DOSE Most people skip a dose of their meds from time to time. This shouldn’t be a problem if it only happens once every month or two. If you’re missing 2 or 3 doses each month, losing track of when you take them, or going whole week- ends without them, then this is when resistance can start. Ideally, you should take 95% of your meds. If you take meds once a day this means missing no more than a couple of doses each month and hopefully not all in a row. If you miss your dose and remember it within a few hours, then take that dose and stay on your normal schedule. If you don’t remember you missed one until much closer to your next scheduled dose, then wait and take the next dose. Do not double-dose. Ask your doctor for advice on this. ... continued next page6 HIV Health & Wellness: Now that you’ve started treatment
  8. Make the most of your pillsand blood workWHEN YOU’RE SICKIt’s very important to keep takingyour HIV meds even when you don’tfeel well … have a cold or flu or feeldepressed. Even during most medi-cal procedures or surgeries, youwill probably still take your HIVmeds. Be sure to tell doctors andnurses what you take.PILL AND HIV STATUS FATIGUEYou’ve probably heard or read about adherence. But whatoften isn’t talked about is the “fatigue” that some peoplecan feel from having to take meds ... keeping them handy,taking them every day, paying for them, etc. People alsojust get tired of being HIV-positive. For a lot of people, thisfatigue comes from living with a long-term condition. The first part of dealing with fatigue is noticing that it’sthere. For some people it may be easy to re-commit totaking pills. For others, ask for help. Talking to other HIV-positive people about how they’ve dealt with these issuescan show you new ways to deal with yours. In the long run, it’s much safer to work through pillfatigue than to consider taking a break from your meds(pages 12-13). Pill fatigue could also be a sign of depres-sion, so if your feelings persist then let your health careprovider know. HIV Health & Wellness: Now that you’ve started treatment 7
  9. Keep up with your health care Many Americans take their health care for granted. They don’t think ahead about how they get their meds or what changes can happen to their insurance. Whether you like it or not, health care reform is here and it may change how and where you get your medical care. Overall, the care that HIV-positive people get after 2014 should be more secure and complete. STABLE HEALTH CARE As health care reform moves forward, you may see some changes that could affect how you see your doctor, get lab work, fill prescriptions, or pay for co-pays and premiums. People who now use either private insurance, Medicaid or Medicare for their health care probably won’t see big changes. Those who use Ryan White services will likely see more, and these changes will vary from state to state. The most important thing you can do right now is to understand how your care is covered. Get up to speed about your current benefits. Then begin to learn the facts about health care reform because a tremendous amount of misinformation is being put out by people who oppose it. Consult www.hivhealthreform.org for facts and new state laws. Your doctor, your clinic and even support groups may also be helpful places to ask. ... continued next page8 HIV Health & Wellness: Now that you’ve started treatment
  10. Keep up with your health careSTABLE SUPPLY OF MEDSIt’s not uncommon for people to run out of one or more oftheir meds on occasion, but having a steady supply shouldbe a priority rather than waiting until the last moment toget your prescriptions filled. Work closely with your doctor,pharmacist and even insurance managers. Plan ahead for weekends, vacations, moves or other timeswhen your regular routine is disrupted. Auto-refills or mailorder refills can help with this, and sometimes can be donefor 2 or 3 months at a time. Use cell phone or online calen-dars to remind you about your refills. Work with your doctor to establish about a week’s over-lap so you always have seven or more days of backup incase of emergency. Refresh your emergency supply to avoidexpired pills. If you rely upon a public insurance program like ADAP,make sure you know when you need to re-apply. Be sure tokeep up with enrollment requirements and any premiumsor out-of-pocket expenses. Make sure you read, act on andfile papers sent to you by these programs. _______ MAIN POINTS TO REMEMBER _______ who use Ryan White services may see their health care change. you have a continued supply of meds. your pills on time. HIV Health & Wellness: Now that you’ve started treatment 9
  11. When to switch HIV meds Most people who take HIV meds will face a time when they have to switch one or more of their meds for some reason. Although people can feel anxious over this, we know a lot about how to do it safely. It’s important to know the reason(s) why you want or need to switch (see below). Work with your doctor about how changing one or more of your meds today might affect your choices over time. SIDE EFFECTS You may have a hard time dealing with a short-term side effect after starting meds (such as constant diarrhea or rash) or a long-term side effect (such as diabetes). If side effects intrude on your quality of life or get worse over time, you may want to consider switching if the HIV drugs are causing them. CD4 COUNT DOESN’T INCREASE It’s reasonable for you to expect a gain of 100 CD4s or more within your first year on meds. This may take longer for some people; for example, if you had a very low CD4 count before starting. If your CD4 count doesn’t noticeably im- prove or even goes down, then you may need to switch. ... continued next page10 HIV Health & Wellness: Now that you’ve started treatment
  12. When to switch HIV medsMEDS NO LONGER CONTROL HIVOne of the main reasons why people switch a drug or eventheir full regimen is because of treatment failure. This iswhen one or more of your meds no longer control HIV.When this happens, HIV has changed its genes enough(mutated) to avoid the meds. As a result, viral load goes up. Treatment failure is a serious situation. Major mutationsmean the drug probably can’t be used again. Minor muta-tions mean it may or may not be used again. Mutations canalso lead to a whole class of drugs not being used. Gettinga genotypic resistance test done (see below) will tell youabout the kinds of mutations you have.SIMPLER REGIMEN,NEW DRUGS AVAILABLEIf you take several pills each day, and espe-cially if you take them twice a day, you maybe able to find a simpler regimen. Also, newdrugs will probably come to market over the next ten yearsthat give you a chance to simplify your regimen.GENOTYPIC RESISTANCE TESTSIf your viral load becomes detectable over two or moretests, then a genotypic resistance test should be done. Thisis best done when viral load is 1,000 or more. The test willshow which drug(s) HIV has become resistant to. Make sure these test results are written down in yourmedical file. This way, you and your doctor can reviewthem and make better decisions about which drugs toavoid and which to try again if possible. HIV Health & Wellness: Now that you’ve started treatment 11
  13. Taking a break from your HIV meds Although today’s meds are much easier to take and toler- ate, sometimes people just want to take a break from them. Scientists have studied how to stop and re-start HIV meds safely. Unfortunately, the studies show that this is generally unsafe because of serious health risks over time. These include a lower CD4 count that doesn’t return to the earlier level, detectable viral load, disease progression, heart disease, cancer and death, among many others. The best thing to do is to find ways to take your meds every day as prescribed. “DRUG HOLIDAYS” Some people take a few days off from their meds every now and then. Doing this once may not cause long- term problems. How- ever, the more often this happens, the more chances HIV has to become resistant to your meds. SHORT-TERM INTERRUPTIONS If you have to stop your meds for a few days due to surgery or an illness that makes it hard to swallow pills, then work with your doctor on how to do this safely. ... continued next page12 HIV Health & Wellness: Now that you’ve started treatment
  14. Taking a break from your HIV medsLONG-TERM INTERRUPTIONSThe only people who may be able to take a break somewhatsafely are those who started HIV meds when their CD4count was above 500. However, it’s still not recommendedbecause the risks outweigh the benefits. Your CD4 countcan drop quite rapidly while you’re off meds, and couldquickly put you in a serious situation. It may seem that taking a long-term break every now andthen shouldn’t be too much of a problem. However, as wesaw in these clinical studies, stopping and then restartingHIV meds can actually be more difficult. Many people dealtwith more side effects, had a harder time with adherence,and saw their CD4 counts never return to normal. If you want to consider a break, it should be done underexpert supervision such as in a clinical study (clinicaltrials.gov). For instance, stopping Viread, Emtriva, Epivir or theircombo pills may cause a flare-up in people with hepatitis B. The bottom line: Do not attempt a break on your own. _______ MAIN POINTS TO REMEMBER _______ health problems. your liver. HIV Health & Wellness: Now that you’ve started treatment 13
  15. Changes in body shape Some people are concerned how their bodies may change from taking HIV meds. In the 80s and 90s, many saw their bodies change shape quite drastically. Things like a large belly, a hump on the neck, enlarged breasts, sunken cheeks or thinning arms and legs were uncomfortable to deal with … both physically and emotionally. These tend to occur much less often today. When they do occur (rarely) they usually take a longer time to develop and are more subtle. We cannot predict who will or won’t develop them, or which ones will appear and to what degree. What we do know is that both HIV and HIV meds can contribute in different ways to these changes, called lipodystrophy. The main reason why this happens is due to a certain kind of damage in fat cells. In the case of HIV and lipodys- trophy, what is written below refers to changes in fats and sugars, both as physical weight and in the blood. GAINING BODY FAT (lipohypertrophy) If people gain fat, they usually see it around their stomachs as visceral fat (a buildup beneath the muscles). It can also happen around the breasts or neck and shoulders. This kind of belly fat is linked to bone loss and heart and other organ diseases, among other conditions. LOSING BODY FAT (lipoatrophy) If people lose fat, they usually see this in their face, arms, legs or butt. It is most often caused by taking Zerit (d4T) and/or Retrovir (AZT) for more than 6 months. Other HIV meds may cause this to a smaller degree. ... continued next page14 HIV Health & Wellness: Now that you’ve started treatment
  16. Changes in body shapeCHANGES IN BLOOD FATS (dyslipidemia)In HIV, changes in blood fats (lipids) refer to cholesteroland triglycerides. As you age, higher levels of these lipidscan increase the risk of heart and pancreas disease, butcertain HIV meds can also increase lipids.CHANGES IN BLOOD SUGAR (hyperglycemia)Diabetes is common in HIV-positive people. High amountsof sugar in the blood can lead to the condition, and some ofthe older HIV meds can raise blood sugar levels.PREVENTING THESE CONDITIONS Keep HIV under control: Since HIV infection on its own has been linked to heart disease and perhaps blood sugar problems, keeping HIV undetectable for as long as possible is one key way to help prevent these conditions. Blood work: Reviewing your routine blood work can alert you to things before they become a problem. Diet and exercise: You probably hear this over and over, but low-fat and low-sugar meals and routine exercise help the body avoid the buildup of fat and sugar over time. Change certain HIV meds: Generally speaking, newer HIV meds tend not to cause these conditions as much as the earlier meds do. If you change meds due to lipodys- trophy, consult an experienced doctor. Medications: Sometimes people need to take meds for diabetes or cholesterol, and are common as people age. Genetics: Your genes play a role in lipodystrophy. How- ever, living a healthier life may offset how severe these conditions may become despite your genes. HIV Health & Wellness: Now that you’ve started treatment 15
  17. Herbs, prescriptions and HIV meds Using HIV meds with some herbal products and supplements can some- times cause serious interactions. It’s wise to understand this issue and discuss it with your doctors. Much of what we know about these inter- actions comes from people talking to their doctors, from cases seen in emergency rooms, and occasionally from clinical studies. A few supplements are known to affect the blood levels of HIV meds. For example, St. John’s Wort and perhaps milk thistle may cause your regimen not to work as well as it could. Ask your doctor, pharmacist or a trained nutri- tionist on ways to avoid unwanted interactions. Sometimes more of a good thing isn’t good after all. Large doses, or mega-doses, of some supplements can actually damage the liver. Before taking mega-doses of any supplement, discuss it with your doctor or pharmacist. Other prescription meds like drugs used for erections (Cialis, Levitra, Viagra) can cause severe low blood pressure and death when taken with protease inhibitors. Talk to your medical provider about drug interactions. _______ MAIN POINTS TO REMEMBER _______ cause some HIV drugs not work as well as they could. sometimes life-threatening interactions.16 HIV Health & Wellness: Now that you’ve started treatment
  18. When will you see a cure for HIV?When HIV was first identified in 1983, the United Statesannounced (very prematurely) that a vaccine was rightaround the corner. Well, it’s 30 years later and a vaccine stillhasn’t been found, nor has a cure. Today’s treatments have radically reduced the profoundillness that most people with HIV used to have. People arenow living quite healthfully with near-normal life spans. Still, many people are not satisfied with thinking thatlifelong treatment is the best we can do. Despite the various scientific disappointments along theway, many people now believe that curing HIV is withinour reach. We’re seeing a concentrated amount of new cureresearch being done. Much of this has come about from asingle case of curing the “Berlin patient” in 2007. You may have heard about Timothy Brown, an HIV-pos-itive American who had become sick from leukemia whileliving in Germany. His illness gave his doctors a chance toexperiment with a unique but risky procedure to cure notonly his leukemia but his HIV. And it seems to have worked. This procedure has opened the eyes of researchers to newideas for curing HIV. Many hope this research will lead toeither a sterilizing cure (completely getting rid of HIV) ora functional cure (keeping HIV so low that the immunesystem controls it on its own). We’re still early in our search for the cure, but this is anexceptional start to the research. Many people are hopingthat, within your lifetime, you will see a cure for HIV. HIV Health & Wellness: Now that you’ve started treatment 17
  19. SECTION TWO:Special situationsThe first section described situations thateveryone living with HIV should knowabout because most people will face themat one time or another. However, our needschange over time and they can differ fromperson to person. Some people may beconcerned about passing HIV on to sexpartners. Others are more concerned abouthow to improve their health and wellness. In this next section, we talk more aboutthose situations. For example, maybeyou’re in your 50s or 60s now or you wantto get pregnant. You’re entitled to live a fulllife with HIV, including having a familyand loving relationships. Read those topicsthat apply to you.
  20. If your sex partner(s) is HIV-negativeDespite what it felt like whenyou first tested positive, thatshouldn’t mean the end ofsex and romance. Tellingyour status to partners ismore tricky and risky forpeople living with HIV, butyou can still have a fulfillingsexual and romantic life. Most people with HIVwant to protect their HIV-negative partners from becom-ing infected, and most people do. The easiest and cheapestway to do this is to either refrain from high-risk sex (suchas anal or vaginal sex without condoms) or always use acondom. Some people also choose only to have sex with ordate other people who are HIV-positive. Below you’ll findother things to consider when protecting your partners.PrEP (Pre-Exposure Prophylaxis)PrEP is a daily HIV pill that an HIV-negative person takesto prevent transmission (along with using condoms). Takingit as directed can reduce transmission by up to 90%. Thisis true in both women and men and for both vaginal andanal sex. PrEP is approved by the FDA and should only bedone with the help of a doctor. If you have an HIV-negativesex partner, PrEP may be something to explore. For moreinformation, read Project Inform’s publications at www.projectinform.org/prep. ... continued next page HIV Health & Wellness: Now that you’ve started treatment 19
  21. If your sex partner(s) is HIV-negative GENITAL INFECTIONS There’s more of a chance of passing HIV if you have sex when a sexually transmitted disease like chlamydia or syphilis is present in either partner. Even if symptoms aren’t present, active genital infections can still raise the risk. Have your doctor regularly screen for and treat STDs. UNDETECTABLE VIRAL LOAD The chance for passing HIV is much less likely when the positive partner takes HIV meds and stays undetectable over time. Undetectable viral load in the blood is linked to lower and perhaps undetectable viral load in vaginal and anal fluids and semen. However, several things can briefly raise viral load in genital fluids and blood: sexually trans- mitted infections, other infections that challenge the immune system like hepatitis B or C, or even a recent vaccination. FORESKIN VS. NO FORESKIN Having a foreskin increases the risk because HIV aims for the immune cells found within the foreskin. For straight men during vaginal sex, there’s about a 60% lower risk of transmission when he is cut. As for anal sex (straight or gay), it’s not as clear how much more protection there is for the man who’s cut. “SERO-ADAPTIVE” BEHAVIORS Sometimes HIV-positive people change their unprotected sex to lower the risk of passing HIV to others: by sero-sorting, ... continued next page20 HIV Health & Wellness: Now that you’ve started treatment
  22. If your sex partner(s) is HIV-negativeor having sex with someone they think is also HIV-positive;and by sero-positioning, or “bottoming” for an HIV-nega-tive partner. Sero-sorting with another HIV-positive person increasesthe risk for super-infection, or getting another strain of HIVwhich may make it harder to control. This most often occursduring the first months after infection. However, there areprobably fewer serious concerns if both partners are onHIV meds and stay undetectable. Sero-positioning may somewhat reduce the risk forpassing HIV, but the HIV-negative top (insertive) can stillget HIV through unprotected vaginal and anal sex. This isespecially true if breaks in the skin or infections are present,if viral load is detectable, or if the top is uncut. Since these sero-adaptive behaviors imply unprotectedsex, you can still get other sexual infections such as chla-mydia, herpes and syphilis, as well as diseases that peopledon’t often think of in terms of sex, like hepatitis C. Recentmini-epidemics of both syphilis and hepatitis C have beenseen in HIV-positive gay and bisexual men. Both have afaster progression and are harder to treat in people with HIV.HIV CRIMINALIZATIONSome states make it a crime to have sex with an HIV-nega-tive person if you don’t disclose you have HIV—even if youuse a condom, take HIV meds, and have an undetectableviral load. In some states, notably in the Midwest and theSouth, prosecutions are increasing for those people whodon’t disclose. To learn more about this and how to protectyourself, visit www.seroproject.com. HIV Health & Wellness: Now that you’ve started treatment 21
  23. If you are under 25 HIV meds allow most everyone to live a longer, healthier life. It’s also true that making this hap- pen takes seeing a doctor and getting regular blood work done. However, younger people— especially those under 25 years old—more often aren’t in regular medical care. This is especially true of young gay and bisexual men and young African Ameri- can and Latino men and women. It’s also true that younger people tend to struggle with keeping up with their meds. This probably has to do with having an active social life and other distractions—like juggling school, working, sports, volunteering and other responsibilities. These are real issues, but they aren’t insurmountable. If you don’t have steady health care, consider getting onto your parents’ insurance if you can. The Affordable Care Act now allows children up to the age of 26 to be on their par- ents’ plans. If this doesn’t work for you (you may not have told your parents about your HIV), then talk to a case manager about other insurance options. As well, ask someone in your doc- tor’s office or your case manager or pharmacist about ways to remember taking your pills and keeping up with medical appointments.22 HIV Health & Wellness: Now that you’ve started treatment
  24. If you are over 50Today, many more people in their 50s and 60s and even 70sare finding out they have HIV. Many HIV-positive people arealso growing into older age. The US Guidelines recommendthat all people over 50 be on HIV meds. And although olderadults tend to respond a little slower to HIV meds, they cannevertheless improve their health and wellness.AGING AND HIVThe older you get, the more important itis to keep up with a healthy lifestyle andnotice medical issues as they develop.The health changes that people typicallysee as they get older—diabetes, bone loss,heart and other organ disease, cognitiveproblems and cancer—sometimes showup sooner in HIV-positive people. It may be more difficult to assess yourhealth, because these conditions couldbe from aging, HIV, HIV meds, othermeds, or a combination of them. Bealert on how your health changes and be diligent about re-porting them to your doctor and following treatment plans. What also can help you stay healthy—and what you cancontrol—is staying active and challenging your mind. Talkoften with friends. Read or fill out puzzles. Take walks orexercise within your limits. These all can help maintain yourbone, brain and heart health. ... continued next page HIV Health & Wellness: Now that you’ve started treatment 23
  25. If you are over 50 HIV MEDS AND OLDER ADULTS If you started HIV meds as an older adult, it may take a little longer to see your CD4 count increase compared to someone in their 20s or 30s. However, it’s very likely you’ll continue to see these improve over time, which is one of the main goals of treatment. In fact, older adults seem to do better with taking HIV meds. The downside of that, however, is that people over 50 tend to have more side effects and drug interactions. It’s common for older adults to take a lot of prescriptions, so your HIV regimen may be just one of several doses of pills you have to remember every day. How many medicines do you take? Which are taken or not taken with food? Has forgetfulness or depression become an issue? Don’t feel embarrassed to ask for help from your nurse or doctor around ways to take your pills on time. Also, every now and then review all the meds you take with your pharmacist or doctor to make sure drug interactions aren’t overlooked so that all the meds you take are working as well as they can. SEX AND TRANSMISSION Protecting sex partners from getting HIV is an issue that people over 50 are dealing with more today. In some ways, unprotected sex seems like a natural thing to do after 50 since pregnancy becomes less of an issue. For others, they may stop using condoms because they’re mentally fatigued from a lifetime of safer sex. Sometimes, people just don’t see themselves at risk. ... continued next page24 HIV Health & Wellness: Now that you’ve started treatment
  26. If you are over 50 As more men use erection drugs later in life, there’s beena marked increase in sexually transmitted infections inpeople over 50. This may be due, in part, to subtle changesin the moist areas of sex organs as people age that can maketransmission easier. For all of these reasons, it’s importantto continue protecting sex partners from getting HIV.VACCINES AND OTHER PREVENTIONAs you get older, several serious illnesses can be preventedby getting routine vaccines. The yearly flu vaccine and theone for pneumococcal pneumonia are safe to get, as arethose used to prevent hepatitis A and B. Don’t forget yourbooster tetanus shots. As well, recent information showsthat the shingles vaccine is safe for HIV-positive people. As you probably know, aspirin can help with heart diseaseand perhaps other inflammatory conditions. So discuss thiswith your provider if you have hypertension. Make sure youget routinely screened for various cancers as well, such ascancers of the mouth, throat, lung, cervix, anus, liver and skin. _______ MAIN POINTS TO REMEMBER _______ HIV meds. manage. Talk to a pharmacist about all the meds you take. Protect your partners from getting HIV and other STDs. prevent other conditions. HIV Health & Wellness: Now that you’ve started treatment 25
  27. If you want to have a family HIV meds have helped people go back to work, volunteer, travel and continue loving rela- tionships. For some couples where one is negative and the other is positive (mixed status), they also want to raise families. It’s very possible for couples to conceive while greatly lowering the chance of passing HIV to the negative partner during sex. Couples should consider the emotional effects of trying to conceive. If both partners are not fully informed or able to speak up for themselves as they make decisions, then it might be better to wait for another time to try. GETTING EXPERT MEDICAL HELP Before you start, get informed medical support from friendly doctors and nurses. This may not be easy, as some do not agree with mixed status couples trying to conceive. You may need to keep looking, use the resources at http://hiv.ucsf.edu/ care/perinatal.html, or find HIV-experienced doctors. Doing this on your own could increase the risk of transmission. STAYING ON A STABLE HIV REGIMEN Keeping viral load undetectable can reduce transmission by up to 96%. Therefore, the HIV-positive partner should be taking HIV meds as prescribed every day and getting more regular viral load tests done. ... continued next page26 HIV Health & Wellness: Now that you’ve started treatment
  28. If you want to have a familyHAVING TIMED INTERCOURSEConception doesn’t happen every time sex does. Therefore,to reduce the risk of HIV as much as possible, restrict sexonly to when there are no genital infections present and onlyto her most fertile days. A doctor can help determine this.TAKING PrEP(PRE-EXPOSURE PROPHYLAXIS)PrEP is when an HIV-negative persontakes an HIV pill daily to prevent HIV,which reduces this risk by up to 90%when used with condoms. PrEP canalso be used by couples who are tryingto conceive, but there may be unknownrisks for the baby if the woman takes PrEP. Talk to yourdoctor about PrEP as part of all family planning decisions.DOING SELF-INSEMINATIONIf he is negative, the woman could use a plastic baby’ssyringe (found in drug stores or doctor’s office) to inserthis semen near her cervix. To collect the semen, he shouldejaculate into a plain condom or clean container. Read“Home Insemination” at http://hiv.ucsf.edu/care/perinatal/resources.html.HAVING A FORESKIN VS. NONEDuring unprotected sex, having a foreskin can make iteasier for the man to get HIV. There’s about a 60% lowerrisk of transmission when the male partner is cut. ... continued next page HIV Health & Wellness: Now that you’ve started treatment 27
  29. If you want to have a family OTHER METHODS Though assisted reproduction services are quite expensive— and not available everywhere—some people turn to fertility specialists who can help them with in-vitro fertilization (IVF) and sperm washing, which are often used together. Sperm washing is a process that “cleans” HIV away from sperm. Couples may also want to consider other choices, such as adoption or donor sperm. These may be appropriate for certain couples wanting to raise children. OTHER THINGS TO CONSIDER Even if the positive partner is on stable HIV meds, genital infections and other infections like the flu could temporarily increase viral load in genital fluids and blood, perhaps to an infectious level. Getting a vaccination can do the same. Avoid unprotected sex during or shortly after these times. Options that reduce the risk for transmission HIV+ HIV- HIV- HIV+ woman man woman man Expert medical support HIV treatment adherence Effective HIV treatment STD prevention, treatment Timed intercourse PrEP No foreskin Self-insemination Assisted reproduction Donor sperm Adoption28 HIV Health & Wellness: Now that you’ve started treatment
  30. If you are an HIV-positive womanNot all HIV meds have been studiedas well in women. For instance, it’s notalways well understood how femalehormones interact with HIV meds.Despite this, treating HIV is prettymuch the same for women and men,aside from the areas described below. However, what often isn’t talkedabout in a doctor’s office are the thingsthat can get in the way of women taking good care of theirHIV and general health. Many women look after otherpeople first before doing those key things that keep themhealthy. This includes taking meds, getting to regular doctorvisits, eating well, getting good sleep, and keeping activewith hobbies. If this sounds like your life, then it opens you up to someof the issues detailed in other parts of this booklet. The bot-tom line: your health matters. And if you’re taking the bestcare of yourself as you possibly can, then you’re also prob-ably doing the best for others in your life.CONTRACEPTIVESMany HIV meds, mostly protease inhibitors and NNRTIs,can interact with hormonal birth control pills (those withethinyl estradiol, norethindrone). These interactions canchange how well the birth control pill or HIV meds dotheir jobs. In this case, women may consider other HIVmeds or use another form of birth control instead of, or inaddition to, the pill. ... continued next page HIV Health & Wellness: Now that you’ve started treatment 29
  31. If you are an HIV-positive woman PERIODS AND MENOPAUSE Heavy, painful or irregular periods may occur with some HIV meds, including some protease inhibitors. Report any changes you notice to your doctor. Women can lose about 5% of their bone mass during menopause. Combine that with the bone loss that can happen from taking HIV meds, from aging or from being inactive, and this can lead to fractures and broken bones. Talk to your provider about your options for prescriptions that help maintain bone health. Some studies show that women with more advanced HIV disease may go through menopause at an earlier age, although other studies do not. PREGNANCY We know a great deal about how to safely prevent HIV being passed during preg- nancy and birth. The topics below should be considered and discussed with your doctor when taking HIV meds leading up to and during pregnancy. Ensuring the mother’s health: positive pregnant women be on treatment, regardless of CD4 count or viral load. ... continued next page30 HIV Health & Wellness: Now that you’ve started treatment
  32. If you are an HIV-positive woman Protecting the baby: disease not start treatment during their first trimester, when the baby’s organs are developing. trying to get pregnant and after getting pregnant, due to a risk of birth defects. If a woman has to use Sustiva, it’s best to wait until the second trimester to start. Choosing meds: seen during pregnancy, such as diabetes. increased during the third trimester. are above 250. - less the woman develops severe side effects, or is resistant to it.BREAST-FEEDINGWhether or not the woman is taking HIVmeds, the virus can be found in breastmilk and may be passed to the child dur-ing breast-feeding. HIV meds may alsobe passed. Therefore, the US Guidelinesrecommend that mothers use formula tofeed newborns. Women should consultexperienced maternity doctors to figure out their options.Accredited national or local breast milk banks may alsohelp and may meet the infant’s need for breast milk. HIV Health & Wellness: Now that you’ve started treatment 31
  33. If you drink alcohol regularly or use recreational drugs It’s not uncommon for people to drink or use recreational drugs. For some, this isn’t an issue for them socially or medically. However, drinking or using drugs can change how well your HIV meds work. Most health care providers recommend that the average man should have no more than two drinks per day. Women should have no more than one. People who drink more than that—or who binge (4 drinks for women and 5 for men within 2 hours)—are at a higher risk for accidents, STDs, mental health problems, and diseases of the liver, heart and brain. As for recreational drugs such as ecstasy and ketamine, they can cause severe reactions with HIV meds, including heart attacks, hepatitis, paranoia and death. That all probably sounds alarming, but we’ve mentioned it because it’s a real issue for some people. As well, there are other reasons why it’s important for HIV-positive people to drink responsibly and to limit their drug use, which includes what’s below. ... continued next page32 HIV Health & Wellness: Now that you’ve started treatment
  34. If you drink alcohol regularly oruse recreational drugsADHERENCEIf you drink regularly or use drugs, you will probably havea harder time remembering to take your meds. As we’vementioned often in these booklets, not taking your HIV medsas prescribed can cause them to stop working and limit yourtreatment options.LIVER DISEASEOn its own, HIV can be hard on the liver. And 1 out of 4HIV-positive people also have hepatitis C, which cangreatly hurt liver health as well. Adding alcohol or certainrecreational drugs can make things even worse. You canhelp your liver stay healthier longer by not using drugs ornot drinking too much or any alcohol. If you’re not successful with cutting down or cutting outyour alcohol or drug intake on your own, ask your healthcare provider or case manager for help. There are manykinds of programs that can support you while you stopdrinking or drugging. _______ MAIN POINTS TO REMEMBER _______ you forget to take your meds on time. - tions with HIV meds. HIV Health & Wellness: Now that you’ve started treatment 33
  35. If you smoke tobacco On its own, HIV can worsen some common diseases, like heart and lung disease, bone loss and various cancers. Nearly twice the number of HIV-positive people smoke compared to HIV-negative people. So when you add smok- ing tobacco (or marijuana)—and to a smaller extent chew- ing tobacco—to HIV infection, then these diseases actually have a chance to develop at a faster rate. This is especially true for heart disease and for head, neck and anal cancers. Almost all doctors would agree that stopping smoking is the number one thing you can do to significantly improve your health. Although it can be a frustrating and difficult process to go through—and most people have to try it more than once—the bottom line is that you can greatly reduce your risk of these health hazards even within one year of stopping. By the time you’re ten years away from your last cigarette your risk for many of these diseases is about the same as people who never smoked. There are many different types of stop-smoking pro- grams and products that may work. On the one hand, some people try stopping on their own with products bought over the counter, like nicotine gum, patches and lozenges. Your doctor can also write a prescription for you, such as Chantix or Wellbutrin. On the other hand, some people prefer to talk with others who are going through the same process and find that support groups or programs at com- munity agencies are more successful for them. For more info, a good website is www.mayoclinic.com/ health/quit-smoking-products/MY00781.34 HIV Health & Wellness: Now that you’ve started treatment
  36. If you have other conditionsDENTAL HEALTHAn often overlooked way to keep good general health is byvisiting your dentist regularly. Poor oral health, like untreatedgum disease, can contribute to other conditions like stomach,heart or lung disease. Why? Because the inflammation andbacterial infections in the mouth can spread down into theupper chest. See your dentist every six months, and if youfeel comfortable with it disclose your HIV status.OVERWEIGHTWhile HIV meds have certainly extendedpeople’s lives, unfortunately we’ve alsoseen many more HIV-positive people become overweight or obese. This can leadto diabetes, hypertension, and heart andkidney disease—conditions already morecommon in HIV-positive people and inAfrican Americans and Latinos. For olderadults with HIV, being physically activemay be even more important to helpfrom becoming frail. If you’re able, consider joining a gym.If you can’t, then taking brisk 20-minute walks a few timesa week can help a great deal. At-home exercise routines areavailable through DVDs, TV and gaming stations. Use on-line sources or find healthy eating programs through yourlocal health department or community organizations. Askfor help when you don’t know where or how to start. ... continued next page HIV Health & Wellness: Now that you’ve started treatment 35
  37. If you have other conditions HEPATITIS C (HCV) About 1 out of 4 Americans with HIV also have hepatitis C, but many don’t know it. If you haven’t been tested, ask for a HCV antibody test. If that comes back positive, then get an RNA test done to see if you have chronic hepatitis C. If you do, get your health assessed by someone who is experi- enced in making decisions about treating both. HIV infection can make hepatitis C worse. It’s unclear whether hepatitis C makes HIV worse. Newer HCV meds can cure hepatitis C in about 3 out of 4 co-infected people. For more info, call 877-HELP-4-HEP (877-435-7443). HEPATITIS B Before starting HIV meds, you should have been tested for hep B. If you were negative, then get the hep B vaccine. If you have chronic hep B, then your current HIV regimen should include one of these meds because they’re also used to treat hep B: Viread (Atripla, Truvada), Emtriva (Atripla, Truvada), or Epivir (Combivir, Epzicom, Trizivir). HIV can make hep B worse, including cirrhosis and end-stage liver disease. It’s unclear whether hep B makes HIV worse. It’s rare for co-infected people to clear hep B, so treating it is more about keeping it less active over time to reduce damage. Seek doctors experienced in treating both. ANAL AND OTHER HPV CANCERS The human papillomavirus (HPV) can cause abnormal cells to grow (dysplasia), which sometimes can turn into cancer. ... continued next page36 HIV Health & Wellness: Now that you’ve started treatment
  38. If you have other conditionsThese include cancers of the mouth, throat, cervix and anus.(HPV also causes the common wart which isn’t cancerous.) HIV-positive men who have sex with men are at a muchhigher risk than normal for anal cancer. HIV-positive womenare also at a higher risk whether or not they have anal sex,and are at higher risk for cervical cancer than HIV-negativewomen. Work with your doctors about how best to preventthese conditions by routine screening.DIABETESType 2 diabetes is usually seen as people age. It is morecommon among HIV-positive people, but many don’t knowtheir risk and go undiagnosed. Some HIV meds, such asprotease inhibitors, can contribute to diabetes to somedegree. It’s still possible to manage both diabetes and HIV,given the various medicines used for both.BONE LOSSMany HIV-positive people have lower than normal bonemass, perhaps due to HIV and ongoing inflammation. Cer-tain HIV meds, such as Viread, can also cause bone loss.Having this bone loss may mean there’s a higher risk forfractures or breaks. Some studies find that this loss levels out within a year ortwo of starting meds, but other studies show continued lossover time. Bone density screenings are helpful for findingbone loss. Vitamin D and calcium supplements may helpprevent bone problems, as well as prescription medicines. HIV Health & Wellness: Now that you’ve started treatment 37
  39. 273 Ninth Street San Francisco, CA 94103 www.projectinform.org/HIVhealth/ To order copies: booklets@projectinform.org.To give feedback: www.projectinform.org/HIVhealth/.To get e-newsletter: www.projectinform.org/signup/.

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