Dealing with drug side effects can be a challenge for anyone. Every anti-HIV drug has its own possible side effects. This is also true of drugs that prevent and treat infections. These effects can vary from one person to the next. Some people experience few or no side effects at all, while some have ones that are mild and manageable. For others, they may be quite severe. This publication provides a discussion on coping with side effects and tips for managing them. The side effects chart provides information about the side effects seen in studies and the percentage of people that experienced these side effects.
The Key to Coping With Your Side Effects
The key to coping with side effects is knowing what to watch out for and having a plan in place to respond if problems occur. If a drug you are taking or are planning to take has a side effect that may be life-threatening, it's important to know what early symptoms of that effect are and to monitor for them. It is also possible to prevent or reduce the seriousness of some side effects by taking certain preventive therapies a few days before or at the same time as starting a new regimen.
Before starting any therapy, talk to your doctor about the risk of side effects from various drugs. This information usually comes from studies conducted on the drug. Ask how often side effects were reported.
Are Women Different?
Women may experience a different type or frequency in side effects compared to men, including therapies not related to HIV. Why this is so is not well understood. It may be due to differences in the way a woman's body breaks down or stores drugs. Generally speaking, women have smaller body weight/sizes than men. It may be that, for their weight, some women take too high a dose of drugs. This could also be an issue for men with small frames. Women's hormones may also affect drugs. Or it may be due to other unknown differences. Still, current information about side effects remains useful in guiding the ways women manage them.
What to Look For, What to Do?
Many people experience an adjustment period when starting a new therapy. This period usually lasts about four to six weeks as your body adapts to the new drug. During this time, you may experience headache, nausea, muscle pain in your arms and occasional dizziness. These kinds of side effects typically lessen or disappear as your body adjusts.
Learn to recognize, monitor and manage side effects should they arise. Often, simple solutions exist to lessen many side effects. In other cases, a particular side effect may be an important signal that requires immediate medical attention.
Once you notice any unusual reactions after starting or changing a drug, report the side effects to your doctor. If possible, talk to others who have used the same drug. They may be able to offer solutions.
Caring for Your Whole Self
Some conditions believed to be side effects may actually be due to anxiety, depression or stress. Caring for your whole self -- including your emotions, thoughts and general health, as well as specific anti-HIV strategies -- can help minimize negative feelings and their effects.
There are some things you can do that may make the adjustment period easier. If possible, take some time off work or lighten your schedule to allow yourself to adjust to the change. If things get hard, see if someone can help out around the house or with children or other obligations.
Take time to re-prioritize your health needs, and make sure you get plenty of sleep and rest. Eat well and keep foods on hand that help combat common side effects like nausea and diarrhea. Try to get a little exercise during the day -- even if just taking a walk.
Most importantly, reach out for support -- be it your family, friends or support group. If you can, let them know what's going on. Sometimes just talking helps, but they may also have ideas to help ease side effects that your doctor might not mention.
A Word About Switching
Sometimes people experiencing serious side effects will switch drugs simply to improve their quality of life, even though the drugs were controlling HIV well. This is one way to deal with the side effects linked to that drug.
Switching a drug solely because of side effects may also save that drug as a future treatment option. In fact, side effects that you have with a drug at one time may not occur again if or when you try that drug again.
However, it is dangerous to simply stop taking one drug in your regimen, reduce the dose without talking with your doctor and pharmacist, or decide only to take it periodically. This can do more harm than good as it leads to drug resistance, making that drug -- and perhaps others -- less useful for you now or in the future.
Getting a Handle on Side Effects
Side effects often occur after starting a new anti-HIV drug but lessen or disappear after a few weeks. Other times they persist as long as that drug or combination is used.
Many symptoms related to drug side effects are also conditions that people face when they have other health conditions. This may include infections, hormonal imbalances, pregnancy, depression or HIV itself.
Whenever you have symptoms, it's important to talk to your doctor to diagnose the cause. But regardless of how severe or persistent the side effects are, you can try some things to manage them.
The tips offered here are for medication side effects.
It's not unusual to feel tired, especially when life is hectic. A sense of tiredness that doesn't go away with rest is a problem. If ignored, fatigue can worsen.
Symptoms of fatigue can be physical -- like it's difficult to getting out of bed or walk up stairs. They can also be psychological -- like having a hard time concentrating. Fatigue is also a symptom of another drug side effect -- anemia.
Getting a handle on fatigue begins with acknowledging it. If you're feeling fatigued, ask yourself: how long have you been tired? Are there activities that are difficult today that weren't a problem a few months ago? Are you having trouble concentrating? Are you having trouble sleeping or sleeping more than normal? The more information you can give your doctor about your physical, psychological and daily habits, the more likely the two of you will be able to decide the proper treatment for your fatigue.
Tips for Fatigue
- Try going to sleep at night and waking in the morning at the same time every day. Changes in your sleep schedule can actually make you feel tired.
- Try to get a little exercise. Exercise eases stress and makes you feel stronger and alive.
- Keep easy-to-prepare foods on hand for times you're too tired to cook.
Rash seems to be a slightly more common side effect among women taking certain anti-HIV medications than men, though it does occur in men as well. Nevirapine (Viramune) and nelfinavir (Viracept) appear to be the main culprits, but more research on rash among women taking other anti-HIV drugs is needed. Of note is the fact that it is not just that rash seems to occur more frequently in women, but women appear more prone to severe rash. It's important to monitor your skin for discoloration and changes in its surface, especially after starting a new medication.
Tips for Rash
- Keep medications like Benadryl on hand in case you develop a rash. It will soothe and comfort the skin.
- Try using unscented, non-soap cleansers or oatmeal soaps.
- Avoid extra hot showers or baths. They irritate the skin.
- Protect your rash from sun exposure as the ultraviolet (UV) rays of the sun may exacerbate a rash.
Peripheral neuropathy is caused by damage to nerves. When these nerves are damaged, it can cause a sensation of burning, stinging, stiffness, tickling or numbness in the feet, toes or hands. These sensations can be mild or severe enough to prevent someone from being able to walk. Peripheral neuropathy can be caused by HIV itself or as a side effect of certain anti-HIV drugs or drugs to treat opportunistic infections.
Treatment of peripheral neuropathy usually involves stopping or decreasing the offending drug. This usually results in clearing up the symptoms. However, there is no drug that can reverse nerve damage. Talk to your doctor if you have signs of peripheral neuropathy. If neuropathy is severe, it's a good idea to consult a doctor that specializes in pain management.
Tips for Peripheral Neuropathy
- Wear loose-fitting shoes, roomy cotton socks, and padded slippers around the house. Good air circulation around the feet helps.
- Keep feet uncovered in bed. Bedding that presses down on your toes can add to the problem.
- Walk around, but not too much. Walking helps blood circulate in the feet (a good thing), but too much walking or standing can make the problem worse.
- Soak feet in ice water to reduce foot pain.
- Massage your feet. This reduces foot pain temporarily.
- Try ibuprofen to reduce pain and swelling.
- Use L-acetyl carnitine (available at health food stores or through prescription) to prevent the peripheral neuropathy related to ddI, d4T and/or hydroxyurea.
Aside from being annoying, the biggest concern is that diarrhea can cause dehydration. So the first course of action is to replenish lost liquids by drinking plenty of fluids, like Gatorade, ginger ale, chicken or beef broth, herb tea or just plain water. Chronic diarrhea may lead to weight loss. Foods that provide nutrients, calories, and absorb liquid (like the BRAT diet -- bananas, rice, applesauce and toast) are good tools in dealing with diarrhea.
Anti-diarrhea medications like Lomotil, Kaopectate, Imodium, or Pepto-Bismol can help. So can bulking laxatives like Metamucil. Nutritional supplements, such as L-Glutamine, Provir or Shaman Botanicals-Normal Stool Formula (SB-NSF) may also help, but can be expensive.
Tips for Diarrhea
- Eat foods high in soluble fiber, which slows diarrhea by absorbing liquid. In addition to the BRAT diet, these foods include oatmeal, cream of wheat, grits and soft bread (not whole grain).
- Try psyillium husk fiber bars (another source of soluble fiber). A recent study showed that two bars eaten one hour before bedtime with a large glass of water can really help diarrhea. They can be found at health food stores.
- Avoid foods high in insoluble fiber, like the skins of vegetables and fruits. These foods can make diarrhea worse.
- Try to avoid milk products and greasy, high-fiber, or very sweet foods. They tend to aggravate diarrhea.
- Try taking calcium supplements (500 mg twice a day).
- Prevent dehydration by drinking lots of fluids.
Dry mouth can result from taking certain medications. It is an uncomfortable condition, making chewing, swallowing and talking difficult. Dry mouth can affect your sense of taste and can promote mouth problems, like tooth decay and oral yeast infections (thrush).
Treating dry mouth can be as simple as drinking plenty of liquids during or between meals. Avoid sugary or sticky foods or caffeinated drinks since these can make your mouth even drier. Chewing sugarless gum can stimulate saliva flow. If these things don't work, your doctor can prescribe a synthetic saliva or anti-dry mouth medication, such as pilocarpine.
Tips for Dry Mouth
- Rinse your mouth throughout the day with salted warm water.
- Try slippery elm or licorice tea (available in health food stores) -- they lubricate the mouth and taste great!
- Suck on sugarless candies, lozenges or crushed ice to cool the mouth and give it moisture.
- Ask your doctor to prescribe products or mouth rinses to treat your dry mouth.
The most common cause of headache is tension, something most people have at some point! Medications, including anti-HIV drugs, can also cause them. Headaches are mostly just a pain and can be eased by over-the-counter medications like aspirin, acetaminophen, ibuprofen, or naproxen sodium. They can also be helped, and prevented, by reducing stress.
Tips for Headaches
- For on-the-spot headache relief: try resting in a quiet, dark room with your eyes closed; place cold washcloths over your eyes; massage the base of your skull with your thumbs and massage both temples gently; take hot baths.
- To prevent headaches from recurring: try to anticipate when pain will strike. Avoid or limit foods known to trigger headaches, especially caffeine (from coffee, tea, soft drinks or some medications), chocolate, red wine, citrus fruit (if more than ½ cup a day), food additives (like monosodium glutamate, or MSG), nuts, onions, hard cheese and vinegar.
Most people experience hair loss as they get older. This is normal and affects some people more than others, especially if baldness runs in the family. Hair loss can be disturbing nonetheless and can damage one's self-confidence.
Sudden or abnormal hair loss can result from taking certain medications (like some used to treat HIV, cancer, circulatory disorders, ulcers or arthritis).
Tips for Hair Loss
- To protect your hair from further damage and loss: avoid or decrease damaging hair care practices or use them infrequently. These include dyeing, perming, straightening, braiding, corn-rowing, using hair dryers, etc.
- Don't be fooled by fraudulent claims for products that promise to cure baldness. They do not exist! The only remedy that comes close is the medication Rogaine, available over-the-counter. It has shown promising results for some (but not many) cases of baldness.
- Stress can make hair loss worse, so taking steps to reduce stress and anxiety often help.
Anemia is low red blood cells. Those are the cells that deliver oxygen to different parts of your body. When your body is short on oxygen, you feel fatigued. Long-term or severe anemia can cause damage to your body. Most people with HIV have anemia at some point. HIV can cause it. So do many drugs used to treat HIV, like AZT (Retrovir). For women, problems with periods can also be a cause or symptom of anemia.
To monitor for anemia, have blood work done at least every three months, even if you're not using anti-HIV medication. A change in diet or nutritional supplements can lower the risk of developing anemia. Using medication to correct moderate anemia (Procrit, Epogen) can also help. In some cases, stopping or changing the drugs that are causing anemia may be necessary. Treating severe anemia requires a blood transfusion.
Tips for Anemia
- Know your red blood cell (hemoglobin) count! Get it checked regularly.
- Fish, meat, and poultry are high in iron and vitamin B-12, both of which may lower risk of anemia.
- Spinach, asparagus, dark leafy greens, and lima beans are high in folic acid, another nutrient that may lower risk of anemia.
Nausea and Vomiting
Feelings of nausea and the urge to vomit vary greatly among people. The two symptoms often occur together. Certain medications used to treat HIV or related conditions can cause nausea. (See the Drug Side Effects Chart to identify drugs that may commonly cause nausea.)
Persistent vomiting can lead to serious medical problems, like dehydration, chemical imbalances and even tearing of the esophagus (throat). Call your doctor if you vomit repeatedly throughout the day or if nausea or vomiting is persistent and/or interferes with your ability to take your medication.
Tips for Nausea and Vomiting
- The BRAT Diet (Bananas, Rice, Applesauce, and Toast) helps with nausea and diarrhea.
- Leave dry crackers by your bed. Before getting out of bed in the morning, eat a few and sit in bed for a few minutes. This can help reduce nausea.
- Try some peppermint, chamomile or ginger tea -- they can calm the stomach.
- Sip cold carbonated drinks like ginger-ale, 7-Up or Sprite. They can help avoid nausea.
- Avoid hot, spicy, strong-smelling and greasy foods.
- If vomiting occurs, replenish fluids with broth, carbonated beverages, juice, Jell-O or popsicles.
- Talk to your doctor about the benefits/risks of anti-nausea medications (such as Compazine, Marinol, Ativan, Tigan, Zofran and Phenergan)
Weight loss can be a serious problem in HIV disease. It can result from some of the side effects discussed in this section -- like vomiting, nausea, dry mouth, anemia or fatigue.
Unfortunately, even though the signs of weight loss can be obvious, it is not always seen as a problem. In fact, many positive women who lose weight due to HIV-related problems are praised and told they "look good."
If you're losing weight and it's not because you altered your diet or exercise patterns for that purpose, it's never a good thing. Talking to a doctor to identify its cause is critical to treating unwanted weight loss.
Tips for Weight Loss
- Monitor your weight. If you are losing weight, work with your doctor to determine the cause. Is it stress-related? Is it accompanying nausea or vomiting? Has it occurred after starting a new medication? What other things are going on?
- Try high protein shake mixes, like Med-Rx or Metabol. Look for products high in protein and low in sugar. These are available at most health food and vitamin stores.
- Ask about discounts at health food and vitamin stores. They sometimes provide people with life-threatening diseases special savings on nutritional products.
Period problems are common in all women, but particularly in women with weakened immune systems. These problems include irregular, heavier, lighter and/or painful periods or the end of menstrual bleeding altogether. Problems with periods can be a side effect of some medications. Most recently, excessive menstrual bleeding has been seen when using ritonavir (Norvir).
More research is needed to determine which anti-HIV drugs have an effect on menstruation. Meanwhile, it's a good idea to track your periods, noting changes if they occur, particularly around the time of beginning a new anti-HIV drug.
Tips for Period Problems
- Consider what else is happening in your life. Have you lost weight? Are you stressed out? These factors might give you clues as to why you're having period problems. Addressing them might help in more ways than one!
- For menstrual cramps, hold a hot water bottle or a heating pad over your lower stomach or back. Or take a hot bath. This reduces stress, too!
- Do mild exercise, like walking or stretching. Exercise may increase blood flow and decrease period pain.
- Oral contraceptives (the Pill) are sometimes used to regulate abnormal periods. Some anti-HIV drugs interact with the Pill. A list of drug interactions can be found in Project Inform's publication, GYN Conditions in Women Living With HIV/AIDS.