Managing your health: a guide for people living with HIV

11. Side effects and symptoms

This chapter is about managing the side effects and symptoms that come with being HIV-positive and taking anti-HIV drugs (HAART). Though some people experience no side effects from their drugs, for most people side effects can range from mild to moderate reactions. In rare cases, reactions may be more serious. They are sometimes temporary and disappear after a few days or weeks. In some cases they don’t go away for a long time; sometimes they never go away. They may show up months or even years after starting treatment. HIV disease also produces certain symptoms, some of which are similar to the side effects of HAART. It can be tricky to figure out whether HAART or HIV itself is to blame. Research is revealing that it’s often a bit of both. However, something you may think is a symptom of HIV disease or a drug side effect may in fact be a signal that something unrelated to HIV is wrong with your body—an infection, for example. It’s important to consult your doctor for a diagnosis.

General advice for side effects and symptoms

Just looking at a list of possible side effects from HIV or anti-HIV drugs (HAART) can fill you with panic: is all that going to happen to me? Relax: nobody is going to get all the side effects and symptoms that will be discussed in this chapter.

Make sure you talk to your doctor about side effects or symptoms you are experiencing.

You may feel more prepared for side effects and symptoms if you know about them in advance. Discuss the possible side effects of a drug with your doctor before starting treatment.  Once you start treatment, make sure you talk to your doctor about side effects or symptoms you are experiencing. It’s helpful to take notes so you can describe them accurately to your doctor. The personal health record can assist you with this. Side effects often improve over time. Knowing that can make it easier to stick with a drug until you see whether the side effects really do improve.

Remember that many things could be causing the problem you are having. Get a full diagnosis from your doctor. Yes, it could be a drug side effect—but maybe it’s a problem with what you are eating, or an infection or a result of getting older. There are options for dealing with symptoms and side effects.

  • If the problem isn’t too serious, wait and see if it improves on its own.
  • If it’s clear which drug is causing the side effect, your doctor may decide to switch you to another drug that doesn’t cause this side effect.
  • Perhaps it is not a drug that is causing the problem. Maybe it is something else that is causing it. In this case, your doctor will try to diagnose and treat this problem.
  • You and your doctor may be able to find some way to deal with the problem, so you can live with it.

Treatments taken to relieve side effects—including natural or herbal treatments, and even things like nasal sprays—can sometimes have side effects of their own. They may also interact with the drugs you’re already taking. Always ask your doctor, pharmacist or naturopath to check these interactions for you.

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Digestive problems

Problems with your digestive system—what doctors refer to as gastrointestinal or GI problems—are among the most common drug-related side effects for people with HIV.

Problems with your digestive system—what doctors refer to as gastrointestinal or GI problems—are among the most common drug-related side effects for people with HIV. HIV disease itself can also cause digestive problems. These problems can include nausea, vomiting, loss of appetite, diarrhea and gas.

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Nausea and vomiting

Nausea—that sick-to-your-stomach feeling like you may throw up—can be caused by many drugs, including anti-HIV drugs.  It is especially common in the first few weeks after starting new drugs.

Nausea caused by anti-HIV drugs will usually lessen or go away over time. The best approach (especially at first) may be to ride out the nausea to see if it improves. Meanwhile, in consultation with your doctor, you might try taking the drug at a different time of day. If your prescription permits it, you can try taking it with food if you’ve been taking it on an empty stomach, or vice versa. Severe nausea, especially with other symptoms such as fever, needs to be treated immediately by your doctor or through the emergency department of your local hospital. It can be a sign of a serious problem.

To treat nausea naturally, try taking ginger in capsules or as a syrup, or make tea from fresh ginger root. You can also drink brands of ginger ale that actually contain a good dose of ginger (usually from health food stores).

Anti-nausea drugs include over-the-counter remedies like Gravol (dimenhydrinate) as well as more powerful prescription drugs. Always check for possible drug interactions with your doctor or pharmacist.

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Loss of appetite

Even if you’re not outright nauseous, you may have little interest in food. Causes might include:

  • infections and fever;
  • low levels of hormones, especially testosterone;
  • depression: many people lose interest in eating when they’re depressed;
  • nutrient deficiencies, especially zinc: take a potent multivitamin/mineral for overall micronutrient support.

All of these causes of loss of appetite can be diagnosed and treated by your doctor.

Keep tasty snacks around so you can make the most of any moment of appetite.

Eating something is better than eating nothing: just do the best you can. Try the tips in the Nausea and vomiting section. Keep tasty snacks around so you can make the most of any moment of appetite. And try to drink lots of fluids and take in lots of protein and calories when you’re feeling better, to make up for the times when you don’t feel like it.

To make sure you’re getting enough calories and nutrients, you may need to rely on supplemental drinks, high-quality protein powders such as whey protein, and nutrient-rich foods. Talk to an experienced dietitian or nutritionist for recommendations and practical suggestions.

Some substances can act as appetite boosters.

  • Medicinal marijuana can be a powerful appetite stimulant. Obviously, marijuana can leave you feeling “stoned,” but it may take much less to boost your appetite than it does to make you high.
  • Marinol, a synthetic form of marijuana, can also be used as an appetite stimulant and is available by prescription from your doctor.
  • Megace (megestrol acetate) was widely used in the past, but has several serious drawbacks. It can reduce testosterone production, and has been linked to a serious bone condition called avascular necrosis. So Megace is not often recommended for people with HIV.

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Diarrhea

When you are starting a new combination of HAART, diarrhea is often a short-term side effect.

Diarrhea is a symptom of many common conditions such as food poisoning, parasites or intestinal infections. HIV infection also affects the intestines and can cause diarrhea. It is also a common side effect of many drugs, including those used to treat HIV. When you are starting a new combination of HAART, diarrhea is often a short-term side effect. While it may get better by itself over time, diarrhea can also signal more serious problems. Diarrhea that is severe or begins suddenly should be reported to your doctor immediately: it may be a sign of an infection that needs to be treated.

In people with HIV, diarrhea can have more than one cause. You may not see a great improvement until all of the causes have been identified and dealt with, so try not to get discouraged if you don’t succeed at first. Some possible causes of diarrhea that you may be able to manage yourself include:

  • stress;
  • excessive consumption of sugar or caffeine, spicy foods and alcohol—try cutting back;
  • trouble digesting fat—cut back on dietary fat and try taking lipase, a fat-digesting enzyme;
  • lactose intolerance—eliminate or decrease dairy products and take a lactase enzyme when you do eat them.

Other treatments include:

  • anti-diarrhea drugs such as Imodium (loperamide) or Lomotil (diphenoxylate/atropine combination);
  • the supplement L-glutamine;
  • “friendly” bacteria supplements, such as acidophilus;
  • calcium supplements.

Increasing your soluble fibre intake can help by bulking up your stool and absorbing the excess water. You can get soluble fibre from:

  • peeled apples or apple sauce;
  • other fruits, including bananas, strawberries, apricots, peaches, pears and plums;
  • grains like oatmeal, oat bran, peas, beans and barley;
  • soluble fibre supplements such as psyllium or ground flax seeds.

Make sure you’re getting enough calories and liquids and that you stay hydrated. Don’t cut down on your liquids in the hope of “drying up the flood”—you need to replace the water and minerals you’re losing.

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Gas

If your digestive system isn’t working properly, undigested food can make it further down into your intestines, where bacteria will feed on it and produce gas.

Smelly intestinal gas and abdominal bloating can result from drugs or from other problems. If your digestive system isn’t working properly, undigested food can make it further down into your intestines, where bacteria will feed on it and produce gas.

Many of the tips for diarrhea may also help with gas. Try taking digestive enzymes or glutamine to help you digest fat, which is often the culprit.

Try to identify which foods cause you the most problems and cut down or eliminate them. Some of the worst culprits are dairy products, broccoli, beans, garlic, onions, cabbage and tough-to-digest vegetable skins.

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Metabolic problems: fat redistribution, heart problems and diabetes

People with HIV, including those on HAART, may be at an increased risk of heart problems. Blood sugar levels can also be higher than normal, increasing the risk of diabetes. There can also be visible changes in the way fat is distributed in the body.

People with HIV, including those on HAART, may be at an increased risk of heart problems, including disease of the heart and blood vessels, stroke and erectile dysfunction. Levels of cholesterol and other fats in the blood can be raised, which increases the risk of heart problems. Blood sugar levels can also be higher than normal, increasing the risk of diabetes. There can also be visible changes in the way fat is distributed in the body. This combination of metabolic (body chemistry) changes and fat redistribution is called lipodystrophy.

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Fat redistribution

Changes in the way fat is distributed on your body may include:

  • lipoatrophy—fat loss in the face, arms, butttocks and legs;
  • unwanted fat buildup in the breasts and belly, on the back at the base of the neck (“buffalo hump”) and sometimes as fatty lumps (lipomas) in various parts of the body.

These changes may occur separately or together, and may or may not be accompanied by other metabolic abnormalities.

Despite a great deal of research, the causes of fat redistribution are not yet fully understood. Many experts believe that the causes include some combination of drug side effects, HIV disease itself, and possibly other factors that are as yet unknown. Unfortunately, stopping drugs doesn’t always reverse the problems, although there have been reports of gradual improvements over time in at least some people.

The best strategy to avoid fat redistribution is to avoid drugs associated with it.

Although research into fat redistribution is continuing, there is not a great deal of evidence for strategies for treating it. The drugs d4T (Zerit) and, to a lesser extent, AZT (Retrovir, and also found in the combination pills Combivir and Trizivir), have been linked to loss of fat, particularly in the face, arms and legs. The best strategy to avoid fat redistribution is to avoid drugs associated with it or work with your doctor to see if you can switch off the therapy you are taking at the first sign of this condition. Many combinations, especially for people starting therapy, try to minimize this side effect.

For people who have lost facial fat, certain kinds of plastic surgery can help fill out sunken cheeks and restore a normal appearance. These involve injections of compounds such as polylactic acid (New-Fill) and polyalkylimide (Bio-Alcamid). The improvements may not be permanent and the cost of the treatments, which usually runs into thousands of dollars, is not covered by provincial coverage plans. In some areas of the body, excess fat can be removed via liposuction (of buffalo humps or lipomas) or surgical reduction (for breast reduction), though the fat sometimes returns over time. Neither approach is possible in the belly because of the high risk of hemorrhage.

Research into the causes and treatments of lipodystrophy is ongoing.

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Cardiovascular (heart) problems

There are three types of fat in your blood that are monitored to assess your risk for heart problems. These are:

  • triglycerides;
  • low-density or LDL (“bad”) cholesterol;
  • high-density or HDL (“good”) cholesterol.

If your levels of LDL cholesterol are too high, fatty deposits can build up in the walls of your veins and arteries. This blocks blood flow and greatly increases the risk of stroke and heart attacks. HDL cholesterol has the opposite effect, tending to protect you from heart disease (see Lipids, Chapter 9, Monitoring your health).

The causes of HIV-related heart disease are complex. HIV itself can damage blood vessels, while smoking and poor diet increase the risk. Some HAART drugs, especially some protease inhibitors and efavirenz (Sustiva, and also found in the combination pill Atripla), are known to raise LDL levels and lower HDL levels. Many people with HIV have abnormally high levels of triglycerides and LDL cholesterol, while having low HDL cholesterol levels. If left untreated, this puts them at increased risk of heart attacks and stroke.

A heart attack happens when the blood supply to your heart muscles is interrupted. This can damage or kill heart tissue and can be fatal within minutes. A stroke happens when the blood supply to a part of the brain is cut off.

Drugs such as statins and fibrates can be used to control dangerously high levels of cholesterol and triglycerides in the blood.

Drugs such as statins and fibrates can be used to control dangerously high levels of cholesterol and triglycerides in the blood. Some of these drugs can interact with your anti-HIV drugs, so it is important to talk to your family doctor or pharmacist about all the drugs you are taking.

Some supplements may help control blood fats, such as:

  • niacin (a B vitamin);
  • carnitine;
  • omega-3 fatty acids, found in fish oils and flax seed oil.

Talk to your doctor about supplements that may help you.

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Insulin resistance and diabetes

The use of protease inhibitors is linked to insulin resistance in people with HIV.

Your body requires sugar (glucose) for energy. Glucose comes from the digestion of carbohydrates in foods such as fruits, vegetables, cereal, pasta and dairy products. The hormone insulin helps glucose to enter your cells and provide food energy. Insulin resistance happens when your body’s cells do not respond properly to insulin and cannot take up the glucose. As a result, glucose builds up in the blood. The pancreas, which produces insulin, produces more insulin to help move the glucose into your cells. If your body cannot produce enough insulin or the cells do not respond to it properly, the result is hyperglycemia or high blood sugar. This can lead to diabetes mellitus (type 2), a state of persistent high blood sugar. The use of protease inhibitors is linked to insulin resistance in people with HIV.

Your doctor will monitor your blood glucose levels closely if you are taking protease inhibitors as part of your HAART combination. Managing your blood glucose levels through food and exercise is a good way to prevent or manage insulin resistance. Sometimes your doctor may need to switch your HAART combination to avoid protease inhibitors or prescribe antidiabetic drugs to control your blood glucose levels.

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Bone problems

Thinning bones may happen earlier in life as a result of anti-HIV drugs or nutritional deficiencies that can be caused by HIV disease itself.  It is very important to ensure that you are getting enough calcium and vitamin D from your diet or by taking supplements.

Thinning bones are a normal part of aging, although this usually happens very slowly. In people with HIV, however, thinning bones may happen earlier in life as a result of HAART or nutritional deficiencies that can be caused by HIV disease itself. Research suggests that more than one-third of people with HIV may have very early-stage bone loss. Osteopenia is the earlier, less severe, form of bone loss. If it continues to the more advanced stage, called osteoporosis, your bones become porous, brittle and can break very easily—particularly at the hip, wrist and spine.

Nutrient deficiencies are a major cause of loss of bone density. Diets low in calcium and vitamin D can speed up bone thinning. These deficiencies can happen in people with HIV because HIV affects the digestive system, resulting in poor absorption of food and the nutrients it supplies to our bodies. It is very important to ensure that you are getting enough calcium and vitamin D from your diet or by taking supplements. Talk to your doctor, pharmacist or a nutritionist knowledgeable about HIV disease about how to prevent or slow down bone thinning.

Among people with HIV, the biggest risk factors for bone loss, aside from nutrient deficiencies, are age, living with HIV for a long time, low body weight, low CD4+ cell counts and smoking. Unlike the HIV-negative population, where women are most affected, HIV-positive men are at risk for bone loss as well.

Studies do not agree whether or not HAART is to blame for bone loss. Currently, most doctors would argue that since HIV itself worsens bone risk, HAART does more good than harm for your bones.

Since bone loss is painless, you may have no idea it’s happening until you break a bone. You need a bone scan to diagnose bone thinning  A baseline scan (done before you start HAART) can then be compared to later readings (see Chapter 9, Monitoring your health).

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Bone death: avascular necrosis

Avascular necrosis is a rare but serious condition in which the blood supply to the bone gets cut off, causing the bone tissue to die. This usually happens in the hip joint, but can also happen in the shoulder, knee or hand.

The causes of avascular necrosis aren’t fully understood. Possible risk factors may include:

  • long-term use of corticosteroid drugs;
  • high cortisol levels (cortisol is a hormone produced by the body);
  • high levels of blood fats, especially triglycerides;
  • heavy alcohol use;
  • bone injuries or infections;
  • testosterone injections;
  • scuba diving.

Unlike osteopenia and osteoporosis, which often cause no noticeable symptoms, avascular necrosis causes symptoms, including:

  • stiffness or aching in the hip area;
  • decreased ability to move the joint;
  • pain in the hip joint or groin area, which may radiate down the leg to the knee.

If you have any of these symptoms, get a comprehensive physical exam including a bone scan.

If avascular necrosis is detected early enough, small holes can sometimes be drilled in the bone to relieve the pressure on the bone marrow and increase blood flow, allowing new blood vessels to grow. This may reduce pain and slow the problem. However, there are no procedures to permanently delay bone death once it has started. If it has progressed too far in the hip joint, the only thing that works is hip replacement.

If you are at risk for avascular necrosis, you might want to avoid activities that put pressure on the hip joint, such as:

  • some weight-lifting exercises (talk to an expert physical trainer to find out which exercises to avoid… not all of them are bad);
  • squats;
  • running on a hard surface;
  • carrying heavy weight on your shoulders.

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Liver problems

Although it can handle a lot of toxins (like alcohol), your liver can start to break down when it’s under too much strain.

Your liver processes most things you put into your body. Although it can handle a lot of toxins (like alcohol), your liver can start to break down when it’s under too much strain.

The most frequent causes of liver damage in people with HIV are:

The health of your liver is usually assessed by liver enzyme tests. You should be getting your liver enzymes monitored regularly, especially if you are on HAART or have existing liver damage (for instance, due to hepatitis C). Severe liver damage can cause abdominal pain, swelling of the abdominal area, fever and jaundice (yellowing of the skin and/or eyes).

Try to eliminate as many sources of toxicity as possible. This includes:

Certain nutrients can also help to support and protect the liver. These include N-acetyl cysteine and the supplement carnitine. As with all supplements, you should carefully check with your pharmacist or doctor for possible interactions with your anti-HIV drugs.

If there is any indication of liver damage, you should be checked for hepatitis or any other possible infections that can damage the liver.

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Pancreatitis

High levels of triglycerides in the blood can put people with HIV at increased risk for pancreatitis.

Pancreatitis is an inflammation of the pancreas, the organ that secretes digestive enzymes and insulin. Pancreatitis can cause:

High levels of triglycerides in the blood can put people with HIV at increased risk for pancreatitis. Pancreatitis can also be caused by some anti-HIV drugs, including ddI (Videx) and d4T (Zerit). If these symptoms persist, contact your doctor.

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Skin problems

HAART drugs can cause skin problems, including rash, dryness and itchiness. More rare is a severe skin rash, which can be a sign of a dangerous reaction to your drugs.

Rashes can be caused by nevirapine (Viramune), delavirdine (Rescriptor), efavirenz (Sustiva, and also found in the combination pill Atripla), nelfinavir (Viracept), abacavir (Ziagen, and alsofound in the combination pills Trizivir and Kivexa) and etravirine (Intelence). The antibiotic combination trimethoprim and sulfamethoxazole (Septra, Bactrim) can also cause rash and sensitivity to sunlight.

Most of the time, skin rashes caused by drugs are mild and disappear after a couple of weeks. However, rashes can sometimes be a sign of a much more serious reaction (hypersensitivity). Drug hypersensitivity includes the following symptoms:

  • severe rash;
  • flu-like symptoms such as fever, aches, pains, tiredness and headache;
  • muscle or joint aches and pains;
  • nausea, vomiting and diarrhea;
  • breathing problems such as difficulty breathing, sore throat and cough.
Talk to your doctor immediately if you get a rash while taking anti-HIV drugs.

Talk to your doctor immediately if you get a rash while you are taking any anti-HIV drugs, especially if you have recently started or changed your combination. If your doctor is not available, go to an emergency department.

In general, the only solution for severe skin reactions is to stop taking the drug that is causing it.

When a rash is not too severe, it may gradually go away after a few weeks on the drug. Sometimes your doctor will prescribe a corticosteroid skin cream that will suppress the reaction. These are only recommended for short-term use.

Naturopaths have found that essential fatty acid supplements like borage and flaxseed oils can often help promote skin health. You can also take a potent multivitamin and mineral to provide the vitamin E, vitamin A, zinc and B vitamins needed for overall skin health. Drink plenty of water and fluids. Try non-perfumed moisturizing creams and oatmeal baths and avoid harsh, antibacterial or highly scented soaps.

You can sunburn more easily if you’re taking certain drugs such as Septra or Bactrim, so avoid prolonged exposure to direct sunlight and use sunscreen.

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Abacavir hypersensitivity

A severe hypersensitivity reaction can be caused by abacavir (Ziagen, or in the combination pills Trizivir and Kivexa). This reaction can include fever, rash, nausea and vomiting, shortness of breath, tiredness and muscle pain. It usually happens within the first six weeks of starting the drug, but (more rarely) may start later. This reaction is not common but can be serious if left untreated.

A simple blood test that your doctor will perform before you start taking abacavir will determine if you are at risk. If you are positive for this test, your doctor will not use abacavir.

If you experience a hypersensitivity reaction to abacavir, you should never take the drug again.

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Muscle problems

People with HIV can develop muscle problems, including muscle aches and pains (myalgia), joint pain (arthralgia), cramps and weak muscle tissue (myopathy) that can result in tiredness.

People with HIV can develop muscle problems, including muscle aches and pains (myalgia), joint pain (arthralgia), cramps and weak muscle tissue (myopathy) that can result in tiredness.

Sometimes muscle pains are caused by nutrient deficiencies. Lack of magnesium may be a factor, especially in muscle cramping. A deficiency of L-carnitine can occur in people with HIV and this can cause muscle damage. In such cases, supplements can help. In rare cases d4t (Zerit) and lipid-lowering drugs called statins can cause muscle problems.

Rare serious problems related to the brain or central nervous system can make it hard to control your muscle movements. Talk to your doctor if any muscle problems develop and find out what is causing them. Severe problems may need immediate attention. For milder problems, there are some things you can do on your own to deal with the discomfort.

Aspirin (ASA) and other over-the-counter pain medicines such as Tylenol (acetaminophen) may help muscle aches and pains, but they don’t really solve muscle problems. Make sure you don’t exceed the recommended dosage and don’t take pain relievers over extended periods of time.

You can also try:

  • Epsom salt baths: mix about three cups of Epsom salts into a hot bath;
  • acupuncture and/or massage therapy;
  • chiropractic adjustments.

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Lactic acidosis

Your muscles naturally release lactic acid as a waste product—that’s the “muscle burn” you feel after working out. Much more rarely, lactic acid can build up to dangerous levels in the blood—a condition known as lactic acidosis. This has been seen in people on the anti-HIV drugs called nukes (see Chapter 10, Treatments). Lactic acidosis can cause a wide range of symptoms including:

  • unexpected tiredness;
  • nausea;
  • vomiting;
  • abdominal pain;
  • unexplained weight loss;
  • shortness of breath or difficulty breathing.

Some of the symptoms of lactic acidosis are so common that they can be hard to interpret. (Who hasn’t felt tired or nauseated?) The usual rule applies: better safe than sorry. Get immediate medical attention if you have any signs of lactic acidosis. It can be fatal if left untreated.

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Headaches

Headaches can be a side effect of HAART or other drugs, or a sign of an infection or other problem.

If you have a headache that is severe, lasts for more than a few hours, or that recurs, get a thorough diagnosis from your doctor as soon as possible.

If you have a headache that is severe, lasts for more than a few hours, or that recurs, get a thorough diagnosis from your doctor as soon as possible. It is best to not treat such headaches until your doctor has diagnosed the problem and told you what treatment is best. Covering up the symptom with pain relievers might mean that your doctor will miss something serious.

Good old Aspirin (ASA) or buffered Aspirin is often the best choice for reducing headache pain. In general, only use Aspirin or other pain relievers when you absolutely need them. Use them according to directions and avoid long-term use, which can be damaging to the liver and kidneys,
Other possibilities for treating and preventing some kinds of headaches include acupuncture or acupressure (see Chapter 5, Complementary and alternative therapies).

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Problems with mental and emotional health

Anxiety, depression, nervousness, dizziness, problems with falling asleep and nightmares are all possible side effects of certain anti-HIV drugs.

Anxiety, depression, nervousness, dizziness, problems with falling asleep and nightmares are all possible side effects of certain anti-HIV drugs. Collectively, these symptoms are known as CNS side effects, because they affect the central nervous system or CNS—the brain and spinal cord.

These symptoms described above can be caused by efavirenz (Sustiva and also found in the combination pill Atripla). They can occur both during the day (including muddled or unfocused thinking, feelings of paranoia and disorientation, depression) and night (insomnia and, when you get to sleep, vivid dreams and nightmares). If efavirenz is causing insomnia, talk to your doctor or nurse about taking it in the morning instead of at bedtime. Some people who take efavirenz may become depressed, anxious or even have suicidal thoughts. If you are taking efavirenz and have feelings like this, speak to your doctor about it. Other drugs, such as ribavirin and interferon used in the treatment of hepatitis C, may cause central nervous system symptoms as well, although not as frequently.

If you experience a sudden unexplained change in your thoughts or feelings, if you have dizziness, trouble concentrating, or have trouble co-ordinating your movements, see your doctor immediately.

If you experience a sudden unexplained change in your thoughts or feelings, if you have dizziness, trouble concentrating, or have trouble co-ordinating your movements, see your doctor immediately. These could be signs of a nervous system infection that requires immediate treatment.

In many people with HIV, these side effects of the central nervous system disappear gradually after several weeks, so if they are not too severe, try to tough it out for at least a month. If the problems continue, stopping the drug may be the only solution. It is best to avoid recreational drugs, including alcohol, when starting efavirenz.

Changes in your thoughts or feelings that occur over a period of time may be a sign of a mental health problem such as depression or anxiety.

Don’t overlook other causes of stress, depression or anxiety that are not related to the side effects of your drugs. Changes in your thoughts or feelings that occur over a period of time may be a sign of a mental health problem such as depression or anxiety. Therapy with a good mental health therapist can help in these cases (see Chapter 6, Your emotional health).

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Peripheral neuropathy

Peripheral neuropathy is nerve damage that causes numbness, burning, tingling and severe pain in the toes, feet and legs, and sometimes in the hands and arms.

Peripheral neuropathy is nerve damage that causes numbness, burning, tingling and severe pain in the toes, feet and legs, and sometimes in the hands and arms. Peripheral neuropathy is most often caused by d4T (Zerit) and ddI (Videx). Viruses, including cytomegalovirus (CMV) and HIV infection itself, can cause or contribute to peripheral neuropathy. Diabetes, some cancer treatments and the heavy use of alcohol, cocaine and amphetamines can also play a role.

Let your doctor know right away if you have symptoms of peripheral neuropathy. If drugs are causing nerve damage, it may worsen and become permanent.

If the pain does not eventually resolve after switching drugs, or if switching drugs is impossible for some reason, doctors may prescribe the following drugs to relieve the pain: gabapentin (Neurontin), amitriptyline (Elavil) or nortriptyline (Pamelor). These are not typical pain-relieving drugs, but seem to work for peripheral neuropathy. Standard pain-relieving drugs such as Aspirin (ASA) or Tylenol (acetaminophen) can also be used, depending on how painful the condition is.

Some nutritional supplements have shown promise in repairing damaged nerves in people with diabetes. They may be helpful in people with HIV who have peripheral neuropathy. These include B complex vitamins, especially B12 and B6, alpha-lipoic acid, gamma-linolenic acid and acetyl-L-carnitine.

You may find relief from neuropathic pain with acupuncture or acupressure treatments (see Chapter 5, Complementary and alternative therapies). Exercise (to increase circulation to the nerves) may also help.

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Resources

Practical Guides for People Living with HIV – CATIE’s practical guide series contains extensive information about managing side effects and symptoms. See:

YourDocTalk – an interactive questionnaire to help you talk to your doctor about HIV treatment

Fact Sheets on side effects and symptoms – Comprehensive information for people living with HIV and their care providers

The Positive Side – Health and wellness magazine contains articles about symptoms and side effects, such as:

Treatment Update and CATIE News – News bulletins about cutting-edge developments in HIV research and treatment

Cannabis and HIV – Information sheets by the Canadian AIDS Society on the medicinal use of marijuana

Medical Use of Marijuana – Information on Health Canada’s system for accessing medicinal marijuana

Other relevant resources can be accessed through the CATIE Ordering Centre or by calling CATIE at 1-800-263-1638.

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About the author

Derek ThaczukDerek Thaczuk has worked and volunteered within the HIV community since his own diagnosis in 1992. He has provided practical support and home care, co-chaired the Ontario HIV Treatment Network, and served as treatment resources co-ordinator at the Toronto People with AIDS Foundation. Derek currently works as a freelance writer and editor for CATIE and other organizations to bring plain-language, understandable health and treatment information to people who are living with HIV.

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