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MANAGING YOUR HEALTH 145
11Side effectsand symptomsThis 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; some-
times 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.
About the authorDerek 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.
CONTENTS
• General advice for sideeffects and symptoms
• Digestive problems
• Metabolic problems
• Bone problems
• Liver problems
• Pancreatitis
• Skin problems
• Muscle problems
• Headaches
• Problems with mental andemotional health
• Peripheral neuropathy
General advice for side effects and symptomsJust 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.
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 on page 317 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 get-
ting older (see Chapter 18, HIV and aging). 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 that 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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11SIDE EFFECTS
AND SYMPTOMS
Make sure you talk to
your doctor about side
effects or symptoms you
are experiencing.
Digestive problemsProblems 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.
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).
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.
MANAGING YOUR HEALTH 147
11SIDE EFFECTS
AND SYMPTOMS
• Eat small, frequent meals instead of larger ones.
• Eat salty snacks (crackers or pretzels) before eating or taking
your drugs.
• Sniff grated lemon peel or drink water with lemon in it just
before eating.
• Chew slowly and eat in a calm, relaxed environment.
• Eat cool, bland, odourless foods.
Tips to help settle your stomach
Anti-nausea drugs include over-the-counter remedies like Gravol (dimenhy-
drinate) as well as more powerful prescription drugs. Always check for possible
drug interactions with your doctor or pharmacist.
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 appetite loss can be diagnosed and treated by your doctor.
Eating something is better than eating nothing: just do the best you can.
Try the tips in the nausea and vomiting section above. 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 a dietician or nutritionist experienced
with HIV 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 (see page
155). So Megace is not often recommended for people with HIV.
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11SIDE EFFECTS
AND SYMPTOMS
Keep tasty snacks
around so you can make
the most of any moment
of appetite.
Diarrhea
Diarrhea is a symptom of many common conditions such as food poisoning,
parasites or intestinal infections. HIV infection 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, diar-
rhea 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—cut out 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;
When you are starting a
new combination of
HAART, diarrhea is often
a short-term side effect.
MANAGING YOUR HEALTH 149
11SIDE EFFECTS
AND SYMPTOMS
Smoking marijuana can be hard on your lungs (smoking anything isn’t
healthy), so some people prefer to bake it into brownies or cookies.
Marijuana is also illegal unless you have gone through a special process
with the federal government allowing you to use it legally for medical
purposes (see Chapter 4, Healthy living).
Marijuana to stimulate your appetite
• “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.
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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11SIDE EFFECTS
AND SYMPTOMS
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.
Mix one cup orange juice with three cups water and half a teaspoon of salt.
Take regular sips to help keep yourself hydrated.
Basic hydration formula
Metabolic problems: fat redistribution,heart problems and diabetesPeople 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.
Fat redistribution
Changes in the way fat is distributed on your body may include:
• lipoatrophy—fat loss in the face, arms, buttocks 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 combina-
tion 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.
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.
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.
MANAGING YOUR HEALTH 151
11SIDE EFFECTS
AND SYMPTOMS
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.
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 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
anti-HIV 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 triglyc-
erides 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.
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11SIDE EFFECTS
AND SYMPTOMS
The best strategy to
avoid fat redistribution
is to avoid drugs
associated with it.
MANAGING YOUR HEALTH 153
11SIDE EFFECTS
AND SYMPTOMS
The warning signs of a heart attack are:
• uncomfortable pressure, fullness, squeezing or pain in the centre of
the chest lasting more than a few minutes;
• pain or numbness spreading to the shoulders, neck, jaw or arms;
• chest discomfort with light-headedness, fainting, sweating, nausea or
shortness of breath.
The warning signs of a stroke are:
• sudden weakness or numbness of the face, arm or leg;
• sudden dimness or loss of vision, particularly in one eye;
• loss of speech or trouble talking or understanding speech;
• sudden, severe headaches with no apparent cause.
Call 911 immediately if you have any of the warning signs of heart
attack or stroke.
Warning signs
Many things other than HIV and HAART can affect your risk of heart
disease. Things you can do to lower your risk of heart disease and
related problems include:
• cutting down or quitting smoking;
• keeping blood pressure and stress under control;
• controlling diabetes, if you have it;
• eating a healthy diet low in saturated fat and high in fibre;
• keeping a healthy weight;
• exercising;
• controlling your cholesterol levels.
Tips to lower your risk of heart disease
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.
Insulin resistance and diabetes
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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11SIDE EFFECTS
AND SYMPTOMS
The use of protease
inhibitors is linked to
insulin resistance in
people with HIV.
Drugs such as statins and
fibrates can be used to
control dangerously high
levels of cholesterol and
triglycerides in the blood.
Bone problemsThinning 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 anti-HIV drugs 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 osteo-
porosis, your bones become porous, brittle and can break very easily—particu-
larly 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 nutri-
tionist 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 loss,
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).
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.
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.
MANAGING YOUR HEALTH 155
11SIDE EFFECTS
AND SYMPTOMS
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 includ-
ing 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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11SIDE EFFECTS
AND SYMPTOMS
Liver problemsYour 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:
• excessive alcohol and recreational drug use;
• co-infection with hepatitis viruses;
• medications and herbal supplements that are processed by the liver.
The health of your liver is usually assessed by liver enzyme tests (see,
Chapter 9, Monitoring your health). 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:
• cutting down or eliminating recreational drugs and alcohol;
• getting vaccinated against hepatitis A and B;
• avoiding infection with hepatitis C by not sharing needles and drug use
equipment and by not having unprotected sex (see Chapter 4, Healthy living,
Chapter 7, Your sexual health, and Chapter 12, HIV-related infections and
cancers). If you are infected with hepatitis C, consider getting treament;
• cutting down consumption of junk foods, soft drinks and caffeine (coffee
and cola);
• eating less saturated fat;
• talking to your doctor, pharmacist or naturopath to make sure you’re not
taking medications or supplements (such as certain herbs) that might
make your liver problems worse.
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.
Although it can handle
a lot of toxins
(like alcohol), your liver
can start to break down
when it’s under too
much strain.
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PancreatitisPancreatitis is an inflammation of the pancreas, the organ that secretes digestive
enzymes and insulin. Pancreatitis can cause:
• severe nausea;
• vomiting;
• severe abdominal pain.
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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11SIDE EFFECTS
AND SYMPTOMS
High levels of
triglycerides in the blood
can put people with
HIV at increased risk
for pancreatitis.
Follow these tips to help keep your liver in good working order.
• Try to avoid alcohol altogether if you have liver disease (hepatitis).
• Make sure that you are vaccinated against hepatitis A and B.
• Achieve and maintain a healthy body weight.
• Maintain generous stores of lean body mass (muscle tissue).
• Get enough protein.
• Choose more whole grains, whole fruits and vegetables.
• Eat a moderate amount of dietary fat and emphasize
“good” fats.
• Take a multivitamin to prevent deficiencies.
• Do not take iron supplements unless prescribed by your doctor to
treat an iron deficiency.
• Supply extra antioxidants to the body.
• Talk to your naturopath and liver specialist about supplements such
as milk thistle (silymarin) and S-adenosyl methionine (SAMe), which
are being studied for their effects on the liver and other health problems.
Love your liver
Skin problemsHAART 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 also found in the combination pills Trizivir and Kivexa) and
etravirine (Intelence). The antibiotic combination trimethoprim and sulfameth-
oxazole (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 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, anti-
bacterial 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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11SIDE EFFECTS
AND SYMPTOMS
Talk to your doctor
immediately if you get a
rash while taking any
anti-HIV drugs.
Abacavir hypersensitivity
A severe hypersensitivity reaction can be caused by abacavir (Ziagen or in
the combination tablets 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) it may begin 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.
Muscle problemsPeople 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 (fat)-
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.
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11SIDE EFFECTS
AND SYMPTOMS
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.
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.
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.
HeadachesHeadaches can be a side effect of HAART or other drugs, or a sign of an
infection or another 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.
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
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.
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AND SYMPTOMS
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).
Problems with mental and emotional healthAnxiety, 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 cen-
tral nervous system or CNS—the brain and spinal cord.
The 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 tak-
ing 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 CNS 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. These could be signs of a CNS
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.
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11SIDE EFFECTS
AND SYMPTOMS
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.
Anxiety, depression,
nervousness, dizziness,
problems with falling
asleep and nightmares
are all possible side
effects of certain
anti-HIV drugs.
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).
Peripheral neuropathyPeripheral 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
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.
MANAGING YOUR HEALTH 163
11SIDE EFFECTS
AND SYMPTOMS
With sleep-related problems, there are different approaches you can
try, including:
• avoiding caffeine, sugar, alcohol and nicotine for four to six hours
before bedtime;
• avoiding strenuous exercise, bright lights and television
before bedtime;
• relaxing before bedtime by doing yoga or breathing exercises, taking a
soothing bath, or sipping calming herbal teas like chamomile.
For some people, prescription or over-the-counter drugs may also help.
Tips to help you sleep better
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.
ResourcesPractical Guides for People Living with HIV
CATIE’s practical guide series contains extensive information about
managing side effects and symptoms. See:
• A Practical Guide to Managing HIV Drug Side Effects
• A Practical Guide to Nutrition for People Living with HIV
• A Practical Guide to Complementary Therapies for People Living with HIV
• A Practical Guide to Herbal Therapies for People Living with HIV
Plain and Simple Factsheets on side effects and symptoms
Available in multiple languages
In-Depth Factsheets 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:
• Facial wasting and what you can do
• 13 ways to love your liver
• Ask the experts: gut reactions
• Good to the bone
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11SIDE EFFECTS
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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.
Look under Symptoms, Illnesses and Side Effects in the e-zine index
(www.positiveside.ca)
TreatmentUpdate 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 (www.cdnaids.ca)
Medical Use of Marijuana
Information on Health Canada’s system for accessing medicinal marijuana
(www.hc-sc.gc.ca/dhp-mps/marihuana/index-eng.php)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
MANAGING YOUR HEALTH 165
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AND SYMPTOMS
NOTES
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11SIDE EFFECTS
AND SYMPTOMS
NOTES