Section One: What Everyone Should Know
Part One of Three in Project Inform's "What You Should Know About When to Start and What Meds to Use" Booklet
Because your life and health change over time, the decisions that you make about your regimen and general health may need to as well. What worked for you when you started treatment 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 treatment decisions may change because of changes in your life, such as pregnancy, a new insurance plan or a new doctor.
- Your feelings can change over time, as does treatment information, so your decisions may change as well.
Yes, we seem to talk a lot about pills and blood work in these booklets. But these are the things that you'll deal with most. They're also the things that can help you stay healthy over many decades. At one time or another, most people who are on treatment will face the issues listed below.
"Blips" on Viral Load
It's common for people to have a low, detectable result on their viral load tests every now and then (called a blip). Several things can cause it: you've had another infection like the flu, the test gets mishandled in the lab, or you get a vaccination. Blips are usually nothing to worry about. Follow up with another test to see if it's back to undetectable.
Clues to General Health
People often focus on their HIV blood work. But it's just as important to review your other test results, such as liver and kidney proteins, blood sugar, cholesterol and Pap smears. If these results change over time, you could develop certain conditions like diabetes or cancer. Learning what all your test results mean -- not just the ones about HIV -- can help you feel the best you can.
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:
- Some HIV pills (like Complera) should be taken with food to work well; others are taken on an empty stomach.
- Antacids (over-the-counter, prescription) can change stomach acid so it doesn't break down meds as well.
- Grapefruit and its juice can block your stomach and gut from absorbing meds. Taking them at different times doesn't stop the interaction.
- Constant diarrhea can keep the gut from absorbing meds. 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 weekends 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.
When You're Sick
It's very important to keep taking your HIV meds even when you don't feel well ... have a cold or flu or feel depressed. Even during most medical procedures or surgeries, you will probably still take your HIV meds. Be sure to tell doctors and nurses what you take.
Pill And HIV Status Fatigue
You've probably heard or read about adherence. But what often isn't talked about is the "fatigue" that some people can feel from having to take meds ... keeping them handy, taking them every day, paying for them, etc. People also just get tired of being HIV-positive. For a lot of people, this fatigue comes from living with a long-term condition.
The first part of dealing with fatigue is noticing that it's there. For some people it may be easy to re-commit to taking pills. For others, ask for help. Talking to other HIVpositive people about how they've dealt with these issues can show you new ways to deal with yours.
In the long run, it's much safer to work through pill fatigue than to consider taking a break from your meds (read more). Pill fatigue could also be a sign of depression, so if your feelings persist then let your health care provider know.
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.
Stable Supply Of Meds
It's not uncommon for people to run out of one or more of their meds on occasion, but having a steady supply should be a priority rather than waiting until the last moment to get your prescriptions filled. Work closely with your doctor, pharmacist and even insurance managers.
Plan ahead for weekends, vacations, moves or other times when your regular routine is disrupted. Auto-refills or mail order refills can help with this, and sometimes can be done for 2 or 3 months at a time. Use cell phone or online calendars to remind you about your refills.
Work with your doctor to establish about a week's overlap so you always have seven or more days of backup in case of emergency. Refresh your emergency supply to avoid expired pills.
If you rely upon a public insurance program like ADAP, make sure you know when you need to re-apply. Be sure to keep up with enrollment requirements and any premiums or out-of-pocket expenses. Make sure you read, act on and file papers sent to you by these programs.
Main Points to Remember
- As health care reform continues to be put into place, people who use Ryan White services may see their health care change.
- Make sure you keep up on your insurance paperwork so you have a continued supply of meds.
- Consider using auto-refills and cell phone reminders to take your pills on time.
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.
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 improve or even goes down, then you may need to switch.
Meds No Longer Control HIV
One of the main reasons why people switch a drug or even their full regimen is because of treatment failure. This is when 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 mutations mean the drug probably can't be used again. Minor mutations mean it may or may not be used again. Mutations can also lead to a whole class of drugs not being used. Getting a genotypic resistance test done (see below) will tell you about the kinds of mutations you have.
Simpler Regimen, New Drugs Available
If you take several pills each day, and especially if you take them twice a day, you may be able to find a simpler regimen. Also, new drugs will probably come to market over the next ten years that give you a chance to simplify your regimen.
Genotypic Resistance Tests
If your viral load becomes detectable over two or more tests, then a genotypic resistance test should be done. This is best done when viral load is 1,000 or more. The test will show which drug(s) HIV has become resistant to. Make sure these test results are written down in your medical file. This way, you and your doctor can review them and make better decisions about which drugs to avoid and which to try again if possible.
Although today's meds are much easier to take and tolerate, 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.
Some people take a few days off from their meds every now and then. Doing this once may not cause longterm problems. However, the more often this happens, the more chances HIV has to become resistant to your meds.
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.
The only people who may be able to take a break somewhat safely are those who started HIV meds when their CD4 count was above 500. However, it's still not recommended because the risks outweigh the benefits. Your CD4 count can drop quite rapidly while you're off meds, and could quickly put you in a serious situation.
It may seem that taking a long-term break every now and then shouldn't be too much of a problem. However, as we saw in these clinical studies, stopping and then restarting HIV meds can actually be more difficult. Many people dealt with 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 under expert supervision such as in a clinical study (clinicaltrials.gov). For instance, stopping Viread, Emtriva, Epivir or their combo 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
- Generally speaking, treatment breaks can cause long-term health problems.
- It's better to find ways to take your pills every day.
- If you have hepatitis B, stopping certain HIV meds can hurt your liver.
- Do not try a long-term treatment break on your own.
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 lipodystrophy, 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.
Changes in Blood Fats (Dyslipidemia)
In HIV, changes in blood fats (lipids) refer to cholesterol and triglycerides. As you age, higher levels of these lipids can increase the risk of heart and pancreas disease, but certain HIV meds can also increase lipids.
Changes in Blood Sugar (Hyperglycemia)
Diabetes is common in HIV-positive people. High amounts of sugar in the blood can lead to the condition, and some of the 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 lipodystrophy, 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. However, living a healthier life may offset how severe these conditions may become despite your genes.
Using HIV meds with some herbal products and supplements can sometimes cause serious interactions. It's wise to understand this issue and discuss it with your doctors. Much of what we know about these interactions 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 nutritionist 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
- Some herbal products, including St. John's Wort, may cause some HIV drugs not work as well as they could.
- Large doses of some supplements can cause liver damage.
- Some prescription drugs like Viagra, can cause severe and sometimes life-threatening interactions.
When HIV was first identified in 1983, the United States announced (very prematurely) that a vaccine was right around the corner. Well, it's 30 years later and a vaccine still hasn't been found, nor has a cure.
Today's treatments have radically reduced the profound illness that most people with HIV used to have. People are now living quite healthfully with near-normal life spans.
Still, many people are not satisfied with thinking that lifelong treatment is the best we can do.
Despite the various scientific disappointments along the way, many people now believe that curing HIV is within our reach. We're seeing a concentrated amount of new cure research being done. Much of this has come about from a single case of curing the "Berlin patient" in 2007.
You may have heard about Timothy Brown, an HIV-positive American who had become sick from leukemia while living in Germany. His illness gave his doctors a chance to experiment with a unique but risky procedure to cure not only his leukemia but his HIV. And it seems to have worked.
This procedure has opened the eyes of researchers to new ideas for curing HIV. Many hope this research will lead to either a sterilizing cure (completely getting rid of HIV) or a functional cure (keeping HIV so low that the immune system controls it on its own).
We're still early in our search for the cure, but this is an exceptional start to the research. Many people are hoping that, within your lifetime, you will see a cure for HIV.