Dealing with drug side effects can be challenging. Every HIV drug has its own possible side effects as well as the drugs that prevent and treat infections. These effects can vary from person to person. 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.
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 key to coping
The key to coping with side effects is knowing what to watch out for and having a plan in place to respond if they occur. If a drug you’re taking or are planning to take has a side effect that may be life-threatening, it’s important to know what these early symptoms are and to monitor for them. It’s also possible to prevent or reduce 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 or pharmacist about the risk of side effects. 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 rate of side effects compared to men, including therapies not related to HIV. Why this is 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 drug. 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.
What to look for; what to do?
Many people experience an adjustment period when starting a new therapy. This usually lasts about 4-6 weeks as your body adapts to the new drug. During this time, you may experience headache, nausea, muscle pain 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 of them. In other cases, a particular side effect may be an important signal that requires immediate medical attention.
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 — 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 give you time 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 eat well and get plenty of sleep and rest. 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 your side effects.
A word about switching
Sometimes people facing serious side effects will switch drugs simply to improve their quality of life, even though they were controlling HIV well. This is one way to deal with side effects.
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’s dangerous to simply stop taking one drug in your regimen, reduce its dose without talking to your doctor or pharmacist, or only take it every now and then. This can lead to drug resistance, making that drug — and perhaps others — less useful for you now or in the future.
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 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 it begins with acknowledging it. If you’re feeling fatigued, ask yourself: how long? Are there activities that are difficult today that weren’t a problem a few months ago? Are you having trouble sleeping or sleeping more than normal? Provide your doctor with this information.
TIPS FOR FATIGUE
- Try going to sleep and waking up at the same time every day. Changes in your sleep schedule can actually make you feel tired.
- Try to get some 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 occur slightly more often among women taking certain HIV drugs than men, like Viramune (nevirapine) and Viracept (nelfinavir). Of note, women appear more prone to severe rash as well. It’s important to check your skin for discoloration and changes in its surface, especially after starting a new medicine.
TIPS FOR RASH
- Keep medications like Benadryl on hand to soothe and comfort skin.
- Try using unscented, non-soap cleansers or oatmeal soaps.
- Avoid extra hot showers or baths.
- Protect your rash from sun (UV) rays as they may make it worse.
Peripheral neuropathy is caused by damage to nerves, symptoms of which include burning, stinging, stiffness, tickling or numbness in the feet, toes or hands. These can be mild or severe enough to prevent walking. Peripheral neuropathy can be caused by HIV itself or as a side effect of some HIV-related drugs.
Treatment usually involves stopping or decreasing the offending drug(s). However, no drug can reverse nerve damage. 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.
- Walking helps blood circulate in the feet (a good thing), but too much can make the problem worse.
- Soak feet in ice water to reduce pain.
- Massage your feet to ease pain.
- Try ibuprofen or other NSAID.
- Try N-acetyl carnitine to prevent peripheral neuropathy.
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) are good ways to deal with diarrhea.
TIPS FOR DIARRHEA
- Eat foods high in soluble fiber, that slows diarrhea by absorbing liquid, like oatmeal, cream of wheat, grits and soft bread (not whole grain).
- Try psyillium husk fiber bars (at health food stores). One study showed that two bars eaten one hour before bedtime with water can help diarrhea.
- Avoid foods high in insoluble fiber, like the skins of vegetables and fruits.
- Avoid milk products and greasy, high-fiber or very sweet foods.
- Try calcium supplements.
- Try anti-diarrhea medications like Lomotil, Kaopectate, Imodium, or Pepto-Bismol.
- Try bulking products like Metamucil.
Dry mouth is an uncomfortable condition, making chewing, swallowing and talking difficult. It can affect your sense of taste and can promote mouth problems.
TIPS FOR DRY MOUTH
- Rinse your mouth throughout the day with salted warm water.
- Try slippery elm or licorice tea (at health food stores) to moisten the mouth.
- Suck on sugarless candies, lozenges or crushed ice to cool the mouth.
- Drink plenty of liquids during and between meals.
- Avoid sugary or sticky foods or caffeinated drinks.
- Chew sugarless gum to stimulate saliva.
- Ask your doctor for a prescription for treating dry mouth.
The most common cause of headache is tension. Different medicines can also cause them. Headaches are mostly just a pain and can be eased by over-the-counter meds like aspirin, acetaminophen, ibuprofen or naproxen sodium. They can also be helped, and prevented, by reducing stress.
TIPS FOR HEADACHE
- 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.
- Try to anticipate when pain will strike. Avoid or limit foods known to trigger them, especially caffeine (coffee, tea, soft drinks, some meds), chocolate, red wine, citrus fruit (more than 1/2 cup a day), food additives (like MSG), nuts, onions, hard cheese and vinegar.
Most people experience hair loss as they get older, though it can hurt one’s self-confidence. Sudden or abnormal hair loss can result from taking certain drugs.
TIPS FOR HAIR LOSS
- Avoid or decrease damaging hair care practices, such as dyeing, perming, straightening, braiding, corn-rowing, using hair dryers, etc.
- Rogaine has shown promising results for some, but not all, cases of baldness.
- Stress can make hair loss worse, so reduce stress and anxiety.
Anemia is low red blood cells. These cells deliver oxygen throughout your body. When your body is short on oxygen, you feel fatigued. Long-term or severe anemia can damage your body. Most people with HIV have anemia at some point. HIV can cause it, as do many HIV drugs , like Retrovir (zidovudine, AZT). For women, problems with periods can also be a cause or symptom of anemia. Severe anemia requires a blood transfusion.
TIPS FOR ANEMIA
- Get routine red blood cell counts.
- 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.
- A change in diet or using supplements can lower the risk of anemia.
- The meds Procrit and Epogen can help correct moderate anemia.
- Consider stopping or changing the drugs that are causing the 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 its related conditions can cause nausea. Persistent vomiting can lead to serious medical problems, like dehydration, chemical imbalances and even tearing of the windpipe. Call your doctor or if nausea or vomiting persists.
TIPS FOR NAUSEA
- The BRAT Diet (Bananas, Rice, Applesauce, and Toast) helps.
- Before getting out of bed in the morning, eat a few dry crackers and sit in bed for a few minutes.
- Peppermint, chamomile or ginger tea can help calm the stomach.
- Sip cold carbonated drinks like ginger-ale, 7-Up or Sprite.
- 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 meds.
Weight loss can be a serious problem in HIV disease. It can result from vomiting, nausea, dry mouth, anemia or fatigue.
The signs can be obvious but are not always seen as a problem. In fact, many positive women who lose weight due to HIV are praised and told they “look good”.
If you lose weight and it’s not because you changed your diet or exercise, 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 lose weight, work with your doctor to determine the cause. Stress? Nausea or vomiting? Started a new medicine?
- Try high protein shake mixes, like Med-Rx. Look for products high in protein and low in sugar.
Period problems are common in all women, but particularly in women with weakened immune systems. These include irregular, heavier, lighter and/or painful periods or the end of them altogether. These can be a side effect of some meds. Excessive periods may also occur. It’s a good idea to track your periods, noting changes if they occur.
TIPS FOR PERIOD PROBLEMS
- Consider what’s happening in your life. Losing weight? Stressed out? Addressing these and other factors 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.
- Do mild exercise, like walking or stretching. Exercise may increase blood flow and decrease pain.
- Oral contraceptives (the pill) are sometimes used to regulate abnormal periods. Some HIV drugs interact with the pill.