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Phoneline 0808 800 6013 i-Base can answer by phone, email or online: [email protected] Guide to side effects and complications What happens if side effects
Can I report side effects official y?
In the UK, both patients and healthcare If the first treatment you are given to help professionals can report side effects with a side effect does not work, there are directly to the Medicines and Healthcare usually other drugs that you can use. products Regulatory Agency (MHRA).
In this guide we list a range of options, This is through the Yellow Card scheme.
including alternative treatments, for each This contributes to an important safety main symptom. If one doesn't work then database, especially for new and unexpected side effects.
Changing one HIV drug for another is Side effects from new drugs often emerge also an important option.
after approval, and it is worth reporting Stopping treatment is not generally them even if you aren't sure.
recommended, but for some patients in some circumstances, this may still be considered. This would be when the benefit of treatment is low but when side effects are difficult or severe.
Phoneline 0808 800 6013 How to talk about side effects to your doctor
If you want your doctor to help, you need How badly?
to describe your symptoms clearly and to How bad are the symptoms? say how they affect your life. • Rate them on a scale (from 1 for mild Your doctor can then check for other to 5 for severe). possible causes. For example, that diarrhoea is not related to food poisoning, • A scale is a useful way to describing or that sexual problems are not related to anything that involves pain. low testosterone.
• Recording severity when side The best way to do this is to keep a side effects occur is better than trying to effect diary. Record everything and take remember later.
this when you see your doctor. • Does anything help? If yes, write this An example is included on page 16. Use a new sheet of paper if you need more space and take this to your appointment.
How does it affect your quality of life?
For each symptom, include information How do the symptoms affect your daily about how often, for how long, how badly life? This can really help your doctor - and the impact on your life.
understand how difficult the side effects How often?
• Many people put up with chronic How often do you get symptoms? diarrhoea without explaining to their doctor that it stops them ever going to • Once or twice a week? Once every the pub or the cinema. Tell your doctor day? 5–10 times a day? etc if this is the case.
• Do they occur at night as well as • If you are feeling more anxious or nervous, are not sleeping properly, or have a lower sex drive, it is important that your doctor understands this.
How long?
• If you have taste changes, or are How long do the symptoms last? too nauseous to eat properly, it is • If you feel sick or get headaches, important for your doctor know.
does this last for 20 minutes, 3–4 • Symptoms of lipodystrophy, the term hours, or different lengths of times? for body fat changes, are difficult to • Is there a pattern? Is it two hours after measure. If this worries you it can each dose? or every morning etc? change your whole outlook on life. Are you less social or less confident? Is this contributing to depression? • Do side effects make you less strict at taking your meds? Guide to side effects and complications Side effects diary
Use this page to record any changes in your health that could be related to side effects.
You may not get any side effects but if you do, then this diary will be useful. The most common side effects are listed below but include others even if they are not listed here. 1. Feeling anxious 17. Body shape changes 10. Nausea/vomiting 18. Sexual changes 3. Feeling depressed 11. Yellow eyes or skin 4. Sleep disturbance 20. Tingling in hands/feet 13. Stomach pains 21. Pain in hands/feet 14. Taste or appetite 23. Eyesight changes 24. Other(s) specify Side effect
Date Time(s)
Scale: 1= mild to 5 = severe
Other comments and questions to ask your doctor: Phoneline 0808 800 6013 How side effects are graded in research studies
Most information about the risk of side GRADE 1 (Mild)
effects comes from clinical studies and Transient (goes away after a short time) or mild discomfort; no limitation in your This is why it is important to report all side daily activity; no medical intervention/ effects if you take part in a study.
therapy required.
Trials collect information about: GRADE 2 (Moderate)
• All potential side effects. Your daily activity is affected in a mild • How often side effects occur, and to moderate way – some assistance may be needed; no or minimal medical • How serious they are. But studies use small numbers of people GRADE 3 (Severe)
for relatively short periods. So sometimes rare side effects are only discovered after Your daily activity is markedly reduced a drug is approved and has been widely – some assistance usually required; used for many years.
medical intervention/therapy required, hospitalisation or hospice care possible.
In studies, each side effect graded from 1 to 4. Grade 1 is mild and grade 4 is GRADE 4 (Potentially life threatening)
serious, life threatening or requiring Extreme limitation to daily activity, significant assistance required; significant medical intervention/therapy, hospitalisation or hospice care very likely.
Grading for some common side effects (from the United States Division of AIDS) is shown in Table 3.
Guide to side effects and complications Hospitalisation required (possible also for Grade 3).
Unable to care for yourself.
more than 7.5 x ULN more than 7.5 x ULN Acute psychosis, suicidal thoughts.
Severe rash, Stevens Johnson syndrome. Severe broken skin. Hospitalisation for IV treatment (possibly also for Grade 3).
Bloody diarrhoea OR over 7 loose stools a day OR needing IV treatment OR feeling dizzy when standing. Normal activity reduced by over 50%; cannot work.
5.0–7.5 x ULN 5.0–7.5 x ULN Severe mood changes requiring medical treatment Unable to work. Severe discomfort OR minimal food intake for more than 3 days. Blistering, open ulcers, wet peeling, serious rash over large areas. Severe vomiting of all food and fluids over 24 hours OR needing IV treatment OR feeling dizzy when standing.
5–7 loose stool a day OR diarrhoea lasting more than one week. Normal activity reduced by 25–50%.
2.5–5.0 x ULN 2.5–5.0 x ULN Moderate anxiety/dist- urbance, interfering with ability to work, etc. Moderate discomfort OR intake decreased for less than 3 days. Rash that breaks skin, hard or soft pimples OR light peeling/scaling. 4–5 episodes a day OR mild vomiting for more than one week. Upper Limit Normal Upper Limit Normal 3–4 loose stools a day OR mild diarrhoea lasting less than one week. Normal activity reduced by less than 25%.
1.25–2.5 1.25–2.5 continue daily tasks. Mild OR transient, but reasonable food intake. Redness or itchy skin on part or whole body 2–3 episodes a day OR mild vomiting for less than one week. 18 able 3: Examples of how common side effects are graded by level of symptoms
Side effect
Diarrhoea Fatigue Liver toxicity: Mood disturbance Nausea Rash V Phoneline 0808 800 6013 Side effects, drug levels and genetics
Most drugs are approved at one standard TDM is important for dose even though different people absorb drugs differently. This can be children and people related to differences in our genes with pre-existing liver or and is a new area of research called kidney damage . and. whenever drug levels or For example, tiny differences in your DNA drug interactions may be can explain the differences in levels of drugs including efavirenz, nevirapine and linked to side effects.
atazanavir. Just as the blood levels of a drug affects • When drug levels may be linked to how effective it is, they also affect the side effects. If you get yellow eyes chance of side effects.
with atazanavir TDM can help find an Some HIV drug levels can be checked effective lower dose.
using a test called therapeutic drug • When drug interactions are a concern. monitoring (TDM). The dose can then be For example, when antacid drugs changed if they are too high or too low. like omeprazole reduce levels of • Protease inhibitors, NNRTIs and atazanavir and cause treatment to fail.
integrase inhibitors can be measured.
TDM involves taking a blood sample, • Nukes (AZT, 3TC, FTC, ddI, abacavir usually after you have been on a and tenofovir) can not be measured.
treatment for at least two weeks. This is because the important levels The hospital needs to know the exact
of these drugs are inside cells and the time that you took your previous dose
tests measure drug levels in blood.
in order to interpret the results.
Some clinics use TDM routinely but in Sometimes a sample is taken just before others you may need to ask for it.
you are due to take your next dose, and sometimes it is also taken 2–3 hours When should Therapeutic Drug
Monitoring (TDM) be used?
TDM is part of an individualised approach for specific groups of people.
TDM is important when routine recommended dosing is not always Information on TDM: appropriate, for example: • In children.
Information on drug interactions: • In people with pre-existing liver or kidney damage.
Guide to side effects and complications Changing HIV drugs
Some symptoms in the first few weeks of treatment may be caused by immune Most combinations involve two nukes. stimulation of your body getting better. So the most commonly used nukes are 3TC, what you think may be side effects may FTC, abacavir and tenofovir. not be related to the drugs at all.
Guidelines recommend that people using If your initial symptoms are only mild or older nukes like AZT, d4T or ddI should moderate, seeing whether they settle switch to tenofovir or abacavir as these down before changing treatment, can be drugs have fewer side effects.
good advice. Some side effects become much easier after the first few days and So long as you haven't developed weeks of treatment.
resistance to other nukes, you can switch one for another. The exceptions are: If side effects are more serious or difficult it is important to switch drugs. • Do not use 3TC and FTC together Changing to another treatment is usually • Do not use AZT and d4T together easy and will not affect your future • Do not use d4T and ddI together • Do not use ddI and tenofovir together • Switching drugs can improve your quality of life and still keep your viral • There may be a caution against using load undetectable.
abacavir and tenofovir together.
The decision to change treatment in order Switching between PIs
to manage side effects will depend on: Switching from one protease inhibitor • The other drugs available.
(PI) to another is also straight-forward, especially if both PIs are being boosted • Whether the side effects are likely to by 100 mg or 200 mg of ritonavir. get worse if don't change.
However, some people find ritonavir a • Whether the side effects are related difficult drug, even at 100 mg/day.
to drugs. Even though there may not be a known link, this may be a Although not generally recommended, new report, and you may be the first atazanavir and fosamprenavir can also be person to experience this.
used without ritonavir.
• Never just stop or interrupt treatment If you want to do this, your drug levels without contacting your doctor first.
need to be checked (see page 19).
• If your current combination is not your first treatment, you may have fewer Close monitoring after changing a drug will help you know whether that treatment was causing the symptoms. Phoneline 0808 800 6013 Switching NNRTIs
Nevirapine and efavirenz have similar
potency but some different side effects. Nevirapine is more linked with skin rash and liver toxicity – usually in the first 1-2 months of treatment. Efavirenz is linked to mood disturbance, disturbed sleep patterns and vivid dreams (called CNS side effects) when starting and more rarely in the long term. Using new drugs and new classes
You should be able to switch from one to the other without stopping treatment or changing your other drugs.
One of the advantages of new drugs is that they hopefully have fewer side Two newer NNRTIs may also become more widely used as options for people who have difficulty with efavirenz or There are several new drugs available including some that work in different Etravirine (Intelence) is a newer NNRTI that can be used if you have difficulty with nevirapine or efavirenz. Etravirine does • Raltegravir (an integrase inhibitor) not cause CNS side effects.
• Maraviroc (a CCR5 inhibitor) Rilpivirine (Edurant) is another new • Other new drugs in development NNRTI. It still has CNS side effects, only at half the rate compared to efavirenz.
Each of these drugs has their own side effects, and advantages as a switch Switching between different
For example, raltegravir does not It is also easy to switch between different increase cholesterol or triglycerides. type of HIV drugs.
As each new drug becomes more widely For example, people who have difficulty used, they will probably be used as taking efavirenz often switch this drug switch options.
to atazanavir/ritonavir or to darunavir/ Each choice will be based on your ritonavir or to raltegravir.
individual treatment history.
Similarly, people who have trouble with a It may also depend on how the drug is
protease inhibitor can often switch to an licensed, on drug cost, and on which
NNRTI or an integrase inhibitor.
clinic you attend. If it is important to
get access to a new drug, it may be
worth changing your clinic.
Guide to side effects and complications Side effects and adherence
Whether you are starting your first .If you are getting treatment or have been using HIV drugs for a long time, your doctor should have side effects, take them talked to you about the importance of seriously and tell your adherence.
This is the term that describes taking the medications exactly as they are prescribed. This includes:• Taking them on time.
If you get side effects, take them seriously and tell your clinic. • Following any dietary advice (ie with or woithout food).
Many treatments help with nausea and diarrhoea. You can be given a small • Taking them everyday: weekdays, at supply of these to take to prevent side weekends and on holiday. effects when you first start treatment. You Not getting adherence right leads to should also be able to collect these easily treatment failure and resistance. from your clinic if you get symptoms.
There is a link between adherence and Adherence can be more difficult when side effects.
medications make you feel less well. Phoneline 0808 800 6013 Guide to side effects and complications You and your doctor
A good relationship with your doctor and Some of your rights as a patient.
health workers can help your health in the • To be fully involved in all decisions about your treatment and care.
Nurses and pharmacists can give you • To be seen within 30 minutes of your support and advice on all aspects of your appointment. If they are running late, treatment. This includes adherence and you should expect an explanation.
• To be treated with respect and They can make referrals to other professionals, including dieticians, psychologists and social workers.
• To have different options for treatment explained to you. This should include Both you and those involved in your care the risks and benefits of each option.
have certain rights and responsibilities. The following lists include some of your • To have your doctor or nurse explain rights and responsibilities as a patient.
any test results.
• For your records to be kept securely. They should be made available for you to see if you ask.
• To choose whether to take part in research trials. This should not affect your current and future care.
• To be able to make a complaint about your treatment. Any complaint must be fully investigated. Again, this must not affect your future care.
• To have a second opinion from a suitably qualified doctor.
• If you write to your hospital or clinic, you should have a written response within 14-28 days.
• To change your doctor or treatment centre without it affecting your future care. You do not have to give a reason for changing doctors or clinics. However, if there has been a problem, then giving a reason can sometimes help resolve the problem. • To have test results and a summary of your treatment history forwarded to your new doctor or clinic.
Phoneline 0808 800 6013 Things you can do to help
• Treat all people involved in your care • Find a clinic that is convenient to you with the same respect you would wish and that you feel comfortable with.
to receive yourself.
• Find a doctor who you like. If you are • Listen carefully to the health advice a woman and want to see a female that you are given, and act upon it.
doctor then ask for this.
• If you don't understand something, • If you are a gay man and want to see ask your doctor to explain it again or a gay doctor, this may be available in a different way.
and may affect your choice of clinic.
• Be honest with those caring for you. • Turn up for your appointments on Tell them about any other drugs time. Tell the clinic if you can't make that you are taking. This includes it. Then they can give your slot to alcohol, legal and illegal drugs and another patient.
complementary treatment. • Make a list of things you want to • Be honest about your level of discuss with your doctor. Remember adherence. If the people managing to take it to your appointment! your care don't know you are having problems, they can't help.
• Ask to see the same doctor at each visit at least until you are settled with your care. This is important. It's difficult to develop a good relationship if you always see a different doctor. Once you are more settled, the advantages of sometimes seeing a different doctor include getting a second opinion and perspective.
• Have your routine bloods taken 2-3 weeks before your regular clinic visits so the results are ready for your

Guide to side effects and complications Phoneline 0808 800 6013 Feeling sick (nausea and vomiting) Feeling tired (fatigue) Insomnia (not sleeping well) Guide to side effects and complications Diarrhoea
Most HIV medications list diarrhoea as a potential side effect even though it only affects
a minority of people. Ritonavir (Norvir) and other protease inhibitors are particularly associated with diarrhoea.
Diarrhoea is a common side effect, but it Finding the cause
is often not treated because people find it difficult to discuss.
Often diarrhoea is temporary and may be due to starting or changing treatment. Diarrhoea can be caused by HIV itself, by Symptoms often reduce within a few days complications of HIV, and by HIV drugs. or weeks as you get used to the meds. Diarrhoea includes looser and more In this case, short courses of anti- watery stool and increased frequency. diarrhoea medications such as It is important that diarrhoea is managed loperamide (Imodium) or diphenoxylate properly by your doctor. Diarrhoea and atropine (Lomotil) can work. if moderate or severe can lead to If diarrhoea persists for more than a few dehydration, poor absorption of nutrients days, and is not directly linked to starting and drugs, weight loss and fatigue.
a new combination, it is important to run Long term use of early HIV drugs tests to check that it is not being caused (some nukes) or heavy alcohol use can by bacterial or parasite infections. damage the pancreas. This can upset the A short course of antibiotics can clear a production of enzymes from the pancreas bacterial infection, and can be prescribed that help you digest food, and cause where an infection is suspected but cannot be isolated.
Diarrhoea can be related to something Heavy alcohol use, or the class of HIV you have eaten, other infections and drugs called nukes (NRTIs) can also travel to other countries.
change the way your body responds to Most of us get diarrhoea at some point diarrhoea. This can be checked by testing and having a lower CD4 count increases a stool sample for faecal elastase (FE1). this risk. Most diarrhoea is self-limiting If pancreatic enzymes are low they can lasting just for a few days. However, be replaced using supplements.
sometimes it can last for a few days, Non drug-related causes
weeks, months or, in some cases, years. Anything lasting more than a few days If diarrhoea continues for more than a is serious enough to talk to your doctor few days, ask for a stool sample to be analysed. Some tests can take a couple of weeks for the results. Depending on the severity and history of the symptoms and following examination, your doctor may prescribe a course of antibiotics along with anti-diarrhoea drugs to reduce the amount of times you need to go to the toilet. Phoneline 0808 800 6013 If lab tests fail to show any bugs, and if • Eat less insoluble fibre. Foods symptoms persist, then your doctor may that contain insoluble fibre include want to perform an endoscopy. This will vegetables, whole wheat breads and get a biopsy (a tiny piece of tissue) to be cereals, skins, fruit, seeds and nuts.
sent for analysis in the laboratory. This • Eat more soluble fibre. This is can rule out other bowel problems such particularly helpful when watery stools as colitis. As diarrhoea can be a symptom are a problem as they help to absorb of other illnesses, it is important to run the excess water and bulk the stool. these tests.
Soluble fibre is in white rice, pasta. Management and treatment
Ispaghula (psyllium) husk (i.e Fybogel or Isogel) and oat bran tablets If nothing shows up in these tests, then increase soluble fibre in your diet.
the treatment of the symptom itself becomes important. • Reduce caffeine intake as this can can cause the gut to speed up and If you are tolerating your combination result in more bowel movements. generally, you may be able to manage Caffeine is in coffee, tea and cola. diarrhoea with anti-diarrhoeal drugs or Recreational drugs can have the dietary changes, both of which are listed same effect.
• Eat less high fat and high sugar foods.
Depending on your treatment options you can also look at changing the drug that is • Eat foods rich in potassium such as likely to be causing this. Some HIV drugs bananas, peaches, potatoes, fish and cause diarrhoea more than others.
chicken. Potassium is lost when you have diarrhoea.
• Try eating live yoghurt to enhance • Drink plenty of fluids to replace the the helpful bacteria in your gut. If you water being lost due to diarrhoea.
have a problem with dairy products • Reducing milk and dairy products in then acidophilus can be taken in pill your diet will help if you are lactose form. If your CD4 count is under 50 intolerant. Alternatives such as rice this may not be advisable.
and soya milk do not contain lactose.
• Whatever changes you make to your • ‘Rice water' works as a starch. Boil diet, make sure it remains balanced. a small amount of rice in water for Don't live on just a few food products, 30–45 minutes (or microwave for a as you will be missing out on essential shorter time). Flavour with ginger, vitamins and minerals. Ask to see honey, cinnamon or vanilla when it a dietician if you want advice and cools, and then drink during the day.
support about your diet.
Guide to side effects and complications Medications and supplements
• Glutamine has been used experimentally to try and improve • Antibiotics are prescribed if a bacterial bowel function. There is still some infection is suspected or detected.
debate about the dosage – opinion • If pancreatic enzymes are low, ranges from 5 to 40 g a day. It is supplements like pancrelipase available either as a powder that must (Creon) or pancreatin (Pancrex) can be dissolved in water or a regular pill.
return them to normal levels.
• Bulk forming laxatives are useful • Fluid and electrolyte replacement when watery stools are a problem. (such as dioralyte and sports They absorb fluid and bulk out the rehydration solutions like Gatorade stool – and lengthen the time the stool etc) are given to rehydrate the stays in the bowel. These drugs are body. Recipes are online to make generally taken following a meal and these yourself: ie 1 teaspoon salt, 8 you should not drink for 30 minutes teaspoons sugar, 1 litre of fluid (water, after taking them. Don't take at the soup, diluted yogurt - but not sugar- same time as HIV meds. Brands based drinks).
include Fybogel, Isogel, Regulan, Celevac and Normacol. • Imodium (loperamide), Lomotil and codeine phosphate are the drugs • Studies on oat bran tablets taken by most commonly prescribed for people with diarrhoea using protease diarrhoea. They work by slowing inhibitors were successful and work gut motions and the speed that you on the same principle. The dose was process food, hopefully reducing the 2–3 oat bran tablets before meals or number of stools each day. Take with after each protease inhibitor dose.
water 30 minutes before food, or as Your doctor will normally prescribe • Pancreatic enzymes supplements these first and, for many people, like Creon or Pancrex (if pancreatic these medications work well. It is insufficiency has been shown) important that the medications are taken regularly until the diarrhoea is well controlled. Start with low doses. • Dioralyte (electrolyte replacement) If you are taking the maximum dose • Imodium (loperamide) or Lomotil (8 pills a day for Imodium) and it is still not working, ask your doctor for • Ispaghula (psyllium husk or seeds) something else.
• Glutamine• Codeine, tincture of opium or MST (slow-release morphine sulphate) • Octreotide injections Phoneline 0808 800 6013 Fig 1: How opiod anti-diarrhoeals work Diarrhoea needs to be treated as it can lead to dehydration, poor absorption of nutrients and i) Before opiates drugs, weight loss and tractions prevents ii) Opiates slow bowel contrac- tions allowing more water to be Palliative care and pain management teams Fig 2: How bulk-forming agents work manage chronic diarrhoea, Bulk forming agent neuropathy and other symptoms that may involve pain or mobility Bulk forming agents contain particles that absorb water and swell up making faeces firmer and more solid The liquid formulation of morphine -as a last resort.
sulphate can be used for diarrhoea that Slow release morphine sulphate (MST) occurs at specific times – ie in the hours or octreotide injections can be used if all after dosing.
the usual medications have not worked– MST works because one of the side although it is used less to control side effects of opiates is constipation, and it effects and more to treat other causes of works by slowing down the gut.
diarrhoea. The slow-release formulation of MST means that low doses of the Because it is an opiate, many doctors do drug are provided throughout the day. It not readily offer MST, so you may have comes in a wide range of strengths, each to be persistent to get to use it. For some coloured differently, so you can be very people it is the only thing that works – careful about only taking the dose that and even very low doses mean you can return to a normal life.
Guide to side effects and complications Feeling sick (nausea and vomiting)
Most HIV medications include nausea as a potential side effect Nausea (feeling sick), and vomiting Medications used for nausea
(being sick), is much less common than Domperidone (Motilium): 10-20 mg every it used to be, because modern drugs are 6–8 hours. Suppositories 30-60 mg easier to take. For most people, nausea every 6–8 hours are a good alternative also improves after a few days or a week to swallowing pills when you are feeling as your body gets used to the drugs. Using an anti-emetic (anti-sickness) pill Metoclopramide (Maxolon): usually 10mg, regularly is often enough. If one anti- 3-times a day. There are slow-release emetic does not work, it is worth trying versions, which can be used twice a day, others. Some work by emptying your including Maxolon SR and Gastrobin stomach more quickly and others by Continuous; however, they should not be stopping the signals that tell your brain used in anyone under 20 years old. Be that you feel sick.
aware of dystonic reactions (twitching If the nausea does not improve, there movements) at higher doses.
may also be an underlying cause which Prochlorperazine (Stemetil): usually 5–10 should be investigated. If it is related mg, 2–3 times daily. A special preparation to an HIV drug, then you may need to is available called Buccastem, 1 or 2 change to another medication.
tablets are placed between the upper lip If you are taking abacavir and you feel and gum and left to dissolve; not having like you may be sick or are vomiting, to swallow more pills is useful when you contact your clinic straight away because are feeling sick.
of the risk of hypersensitivity reaction. Haloperidol: 1.5 mg daily or twice (See page 48). daily where nausea is severe. This is How to describe nausea to your
particularly useful as it can be taken at night to avoid early morning nausea.
• How often each day do you feel sick, Sometimes these medications have side or are you sick? effects themselves that you should ask your doctor about.
• How many days a week does this Where other medications and lifestyle changes have failed and nausea • How long does the nausea last? continues, then medications that are • Has this affected how much you can normally reserved for patients receiving very strong chemotherapy may be • Do you feel more tired or weak as a These include granisetron, ondansetron and tropisetron and they are highly Phoneline 0808 800 6013 Other suggestions
If changing your medication is not an
option and the nausea is continuous, then any of the following suggestions can help.
• Eat smaller meals and snack more frequently rather than eating just a few • Try to eat more bland foods and avoid foods that are spicy, greasy or strong • Leave some dry crackers by your bed and eat one or two of them before getting up in the morning • Try not to drink with your meal or • Ginger is very helpful and can be straight after. It is better to wait an used as capsules, ginger root powder hour and then sip the drink slowly or fresh root ginger peeled and • Try eating cold rather than hot food, or steeped in hot water let hot food cool well before you eat it • If cooking smells bother you, then • Peppermint is also useful and can be open the windows while cooking and taken in tea, sweets or chewing gum keep the room well ventilated • Acupressure and acupuncture may • Microwave meals prepare food quickly help, anti-nausea acupressure bands and with minimum smells, so you are available from most chemists can eat a meal as soon as you feel hungry. Getting someone else to • Try to avoid things that irritate the prepare your meals can help, if this is stomach such as alcohol, aspirin and • Don't eat in a room that is stuffy or • If your HIV meds include efavirenz that has lingering cooking smells (including Atripla), do not eat high fat meals in the two hours before you • Eat meals at a table rather than lying take these meds.
down and don't lie down immediately Guide to side effects and complications Feeling tired (fatigue)
Most HIV medications include fatigue as a potential side effect
Fatigue (feeling tired) used to be reported Fatigue can be caused by many things as a common symptom related to HIV and treatment. It is now reported much less frequently with modern treatment.
Many people instead find they have far more energy, even in the first weeks of • Lack of sleep treatment, because their viral load is Fatigue in HIV positive people is often more likely to be related to other factors than as a side effect of HIV drugs. • Antihistamines (used to treat hay fever) and flu and cold remedies These include depression, anxiety, sleep • Alcohol and recreational drug use problems, other health complications, and social factors like not having work or • Underlying HIV-related illnesses. • Being more active than you are able If your HIV meds stop you sleeping well, you will be tired the next day, so the • Hormone imbalances such as low tiredness can be due poor sleep rather levels of testosterone or DHEA than a direct side effect of the drug.
(dehydroepiandrosterone) in both men What is fatigue?
Fatigue is defined as a general feeling of • Other health conditions tiredness that does not really go away, How to describe fatigue to your
even after you have been able to rest.
Fatigue can be physical or mental.
Fatigue can start slowly and build up With physical fatigue you are not able without you realising it. To describe this to to be as active as you used to, even your doctor it helps to give examples of with simple tasks like going up stairs or when you feel more tired.
carrying shopping.
If you can compare how you feel now with With psychological fatigue, you are not how you felt six months or a year ago, able to concentrate as well as normal or this will also help.
you lose the motivation to do things.
Describe how often you are tired or out of breath for example. As fatigue can be related to poor sleep, include information about your sleep patterns.
Describe how fatigue affects your daily Phoneline 0808 800 6013 Multivitamins can be prescribed by your If you are feeling very tired and have doctor, and supplements of vitamin any of the other symptoms associated B12 can sometimes help you feel more with lactic acidosis (vomiting, nausea, sometimes pain in the stomach and/or You can also ask to be referred to a liver, unexplained weight loss, difficulty dietician who can help you assess and breathing etc - see page 64) it is very plan changes to your diet.
important that you report this to your Psychostimulants like methylphenidate (Ritalin) and pernoline (Cylert) used in Lactic acidosis is now extremely rare in low doses, have sometimes been used to Western countries and is mainly linked to treat HIV-related fatigue but side effects the early nuke d4T (stavudine).
include hyperactivity, addiction, loss of appetite and liver toxicity.
Treatments
Blood tests can check whether your
fatigue is caused by anaemia (low red blood cells). This can be a side effect of AZT and can be treated easily with medication or with a blood transfusion in more serious cases.
You may be feeling more tired because you are not sleeping properly, and one study found this explained fatigue in over 60% of cases. There is more information about difficulties with sleep on pages 36–37.
If you are not eating a balanced diet – ie not getting sufficient calories and nutrients for your body to function normally – this can leave you feeling Guide to side effects and complications Insomnia (not sleeping wel )
NOTE: See pages 44–47 for sleep disturbance associated with efavirenz and rilpivirine.
Sleep is an essential part of a healthy life. Your sleep diary should include when It is a time when your body is able to rest you fall asleep and when you wake up on week days and weekends. Include any If you are not able to get regular, good naps you have during the day.
quality sleep, either in the long or short • Record how you feel about the term, your ability to think, speak and general quality of your sleep, including concentrate will be reduced. You can vivid dreaming or nightmares.
be irritable and have slower reactions, • Record drug and alcohol use -– or and your memory and judgement will be changes in use such as withdrawal or cutting back on either.
Sleep problems are generally under- • Caffeine in tea, coffee and cola can reported, under-diagnosed and under- affect your ability to sleep, even many treated. Keeping a sleep diary for the hours before you go to bed. Keep a week before you see your doctor can help record of how much caffeine you drink diagnose some of the problems.
during the day and see if changing to Apart from with efavirenz, insomnia is far a non-caffeine alternative helps.
more commonly related to depression • Include details about your sleep than a side effect of HIV treatment.
environment. How comfortable is your One recent study reported that 1 in 3 bed? Is the room warm and quiet? HIV positive people had symptoms of • Include when you normally eat. depression and in 40% of cases this was Leaving a couple of hours between not being treated.
your last meal and going to sleep will Your psychological health relates closely improve the chance of a better sleep.
to your physical health. Getting a referral Stress and worry can easily disrupt your for support for depression, including sleep pattern, as can ongoing health treatment if appropriate, may help with concerns, especially if they are painful or sleep problems.
Factors affecting sleep include: Your doctor should also give you a • Problems falling asleep at night? physical check up and blood tests to • Waking up too early in the morning? check for cardiovascular, respiratory or hormonal reasons, especially thyroid • Waking throughout the night and only function, that may be causing sleep getting intermittent sleep? Phoneline 0808 800 6013 Suggestions to help
Sleeping pills are only usually prescribed It is important that the causes of insomnia when other self-help remedies have been are diagnosed before any treatment is tried. They are used to help re-establish a pattern of sleeping. They are not
The wide range of causes mean that recommended or generally prescribed
non-pharmaceutical approaches, such for long-term use.
as having a warm bath or hot milky drink Sleeping tablets should only be used for a before bedtime, can often make a big short period and at the lowest dose.
difference and are sometimes sufficient.
All sleeping pills work in a similar way by reducing brain activity, but the type of sleep they produce varies between • Sleep only enough to be refreshed.
different types of drug. • Get into a routine where you can go to They can help you sleep, but the sleep and wake up at the same time depressed brain activity means that the each day. Waking up earlier may help.
quality of sleep is often not as good as • Try to exercise every day.
natural sleep, and you may still not feel rested the next day.
• Avoid extremes of noise or Sleeping pills reduce the amount of ‘dream sleep' that you get which is an • Drink chamomile or other herbal teas.
important component of good sleep. • Make your bedroom as comfortable Sometimes this can leave you feeling and relaxing as possible.
drowsy the next day. They can become • Eat an evening meal so that you are less effective after even a few days' not hungry when you go to bed.
use, and you can develop a physical or psychological dependency if they are • Try burning oils.
used for more than 1–2 weeks.
Although benzodiazepines (ie • If you use sleeping pills, don't use temazepam) have relatively few side effects they can interact with protease inhibitors. Non-benzodiazepines such as • Drink caffeine drinks or alcohol before zopiclone and zolpidem work in a similar bedtime as this will reduce the chance way, are shorter acting, and are preferred when anxiety is not a contributing factor.
• Smoke close to bedtime – it makes Melatonin is a hormone produced at sleeping difficult night linked to your ‘biological clock'. As a • Try not to nap during the day, so that supplement it is used to help deal with jet you are more tired at night when you lag and may help return sleep patterns to normal, although side effects include vivid Guide to side effects and complications Your mental health describes how you sex work, previous abuses and other think about yourself and your life on a causes of vulnerability including day-to-day basis. It is about how you mental health itself. An HIV diagnosis interact with your surroundings and the can further add to this.
people around you.
• HIV positive people are more likely From a medical perspective, mental to use alcohol and recreational drugs health covers a wide range of symptoms. which are associated with mental These include depression and anxiety health issues.
that can range from mild (which are easy • Some HIV drugs have side effects to mange) to moderate and severe (when that change your mood and include they dominate your life).
depression, paranoia, anxiety etc. It Most people have times when their is essential that someone with these mental health is fragile. Life involves side effects uses alternative drugs stress, and stress can change your mood (see pages 44–47).
and ability to cope with difficult situations.
• HIV can increase the risk of infections If difficulties continue over time, this in the brain. This is usually related can increase the risk of other medical to very low CD4 counts (under 100). problems, including adherence to meds. Neurological symptoms (how you Getting appropriate help and support is think, feel and behave due to a direct important, and the earlier the better.
impact on the brain) have also been reported in very early HIV infection You doctor can only help if he or she knows about these difficulties. It is important to say if you are worried.
HIV and depression
It is very common for HIV positive people Depression can include a wide range have to have symptoms of depression of symptoms and if these continue (for or mental health problems and these are example occuring every day for two often untreated.
weeks) this should prompt referral for a This can be for several overlapping and specialist assessment. These include: • Feeling sad, empty, anxious, restless • An HIV diagnosis affects how you feel or irritable in a way that affects your about yourself and how you fit in to society. Prejudice is still around–as • Feeling hopeless or pessimistic or that is ignorance about HIV. This leaves you are not in control of your life many people feeling more isolated • Lacking energy, or interest in activities and needing support to restore their that you would normally enjoy confidence about themselves.
• Feeling guilty, hopeless or worthless • HIV rates are higher in people who are already marginalised or • Having difficulty concentrating, disempowered. This can be related to remembering things or making sexuality, gender, drug use, poverty, Phoneline 0808 800 6013 "After 12 years of treatment I've had my share of difficult side effects but none of them have put me off continuing treatment.
Diarrhoea and insomnia added to my depression, anxiety and agoraphobia. Fatigue from lack of sleep and anxiety have at times made me reclusive. I found psychological side effects are extremely hard to describe or quantify to a doctor. It is definitely better to ask for help early. Asking for help at a time of crisis might mean a waiting lists to see a counsellor. Anti depressants can help but sometimes have their own side effects." • Not sleeping or eating properly, weight Treatment and management
loss, overeating, lack of interest in HIV does not mean you will have mental health problems, but if you are having • Thinking about death or suicide or problems, many things can help. attempting suicide • Having a friend who you can talk to.
If you have any of these symptoms, you may be depressed, and your doctor • Support groups reduce isolation and or other heath care workers need to help you meet other people with understand how you feel and the impact this is having on your daily life.
• Counselling and/or behavioural Depression can easily be overlooked therapy can help you cope with issues in general consultations so is often related to HIV or earlier traumatic undiagnosed. The earlier you talk about how you feel the easier it will be to get the • Keeping active can keep you support you need.
occupied. Regular exercise reduces Recovery from depression, even with stress and mental health symptoms.
medications, can take time, but treatment • Medications, such as antidepressants, and support can work.
can reduce symptoms.
Guide to side effects and complications Sexual dysfunction, whether due to HIV, In long-term relationships, fear and side effects of HIV treatments, or other concerns about risk may never be factors, can dramatically reduce quality discussed or resolved in detail. With an HIV negative partner, either or both Sexual dysfunction includes reduced partners may become preoccupied with sex drive (a loss of interest in sex) and a risk of transmission, however small physical difficulties (such as loss of and however safe their sex. This is a pity erection or difficulty reaching orgasm). given that HIV treatment reduces this risk so low that the impact of PEP (using HIV Although several reports linked this to treatment after a potential exposure) is protease inhibitors, sexual dysfunction is thought to be minimal if the HIV positive not generally reported as a side effect of partner has an undetectable viral load.
With HIV positive partners, there can It is likely that sexual problems affect a lot be medical concerns about resistance, of HIV positive people, not least because reinfection and the risk of other sexually of the complex social factors. It takes many people a long time after they are diagnosed before they develop or regain Many people find it difficult to talk to their sexual confidence. doctor about this aspect of their lives and it is something that doctors rarely ask Although most research into sexual patients about directly.
dysfunction associated with HIV has been carried out in men, when women have Together with many of the medical issues been included in these studies, a similar listed below, it may be complicated to level of concern has been reported. identify one single cause. For example, a study by anonymous In 2012, given that treatment has given questionnaire in over 900 HIV positive us the possibility of living a natural life- people using combination therapy (80% span, it is important to try and resolve men, 20% women) found that around sexual problems. This is something one-third reported less interest in sex. that your clinic can help with, but it is something you may need to be direct and With new partners, the decision to discuss HIV, perhaps before you know very much about a person, can be difficult. Not disclosing your HIV status, even when your partner is not at risk because you use condoms, can be a difficult barrier to overcome later in any Phoneline 0808 800 6013 Sexual dysfunction can be caused by a If you have a reduced sex drive then ask wide range of medical and psychological to have your testosterone levels checked with a simple blood test.
• HIV positive men and women have For men, the range for normal levels is reduced testosterone levels compared 10-30 nmol/L but this does not allow for to HIV negative people. changes in age. If your levels are lower • Depression can affect sexual health.
than this, testosterone replacement treatment can be given by patch, gel, • Many treatments for depression implant or injection. including fluoxetine (Prozac), citalopram (Cipramil), paroxetine If you have other symptoms (low sex (Seroxat) and sertraline (Lustral) can drive, fatigue, etc) then testosterone decrease libido and lead to erection treatment is one option you can try, even difficulties in men. Mirtazapine (Zispin) if you are within ‘normal' levels.
may be considered as it has little If your testosterone levels are low, have or no effect on sex drive and fewer your bone density monitored as HIV interactions with HIV drugs.
positive people are at higher risk of • Sedatives, tranquillisers and other medications can cause sexual If effective, increased testosterone levels dysfunction, as can smoking, alcohol should reduce depression and fatigue and recreational/illegal drug use. and increase sex drive.
• Long-term use of steroids or male Testosterone (at much lower doses) is being studied as a treatment for sexual • Relationship- or work-related stress dysfunction in women. Hair growth, deeper voice and clitoral enlargement • Some side effects are associated with are side effects that require caution in higher rates of sexual dysfunction. This can include neuropathy (for physical reasons) and lipodystrophy (for psychosocial reasons). How you feel about yourself and your • Sexual dysfunction is more common body and how you feel about HIV can in HIV positive people who are not affect your sexual health. HIV negative using HIV drugs compared to HIV people and society in general can react negative people.
in irrational ways to HIV, which can • Age (older than 40 years), diabetes, contribute to how you feel as an HIV pelvic surgery, fear of failure, positive person. hypertension can all cause changes in Dealing with an HIV diagnosis, whether sexual function.
or not you are on treatment, takes a lot of courage and perseverance. If treatments work well, you can be faced with new Guide to side effects and complications choices in life and if they are not working well and you are dealing with illness or side effects. You would expect these things to impact on your sex life.
Talk to your doctor. Referral to a sexual health clinic or counselling support is often appropriate. Many clinics have psychologists who are trained and experienced in sexual dysfunction.
Treatments for erectile
dysfunction
Different approaches are used depending
on the most likely cause. Approaches to treating erectile dysfunction include counselling, vacuum devices, cockrings and treatments like Muse (an implant) and caverject (an injection). Oral medications include sildenafil (Viagra), vardenafil (Levitra) and tadalafil (Cialis).
Oral medications can sometimes help reduce psychologically difficult situations. For HIV positive people they should be available on the NHS (after a consultation) or by asking your doctor for a private prescription. Some HIV medications interact with Viagra. Lower doses – usually one 25 mg in any 48-hour period – are used for people using a PI or NNRTI based combination. Viagra should never be used with poppers (amyl nitrate). Viagra is not currently licensed for women although small studies reported benefits.
Phoneline 0808 800 6013 Drug-specific side effects CNS side effects: mood alteration, anxiety, dizziness & sleep disturbanceHypersensitivity reaction (abacavir and others)Increased bilirubin (yellow skin or eyes)Kidney toxicity including kidney stonesLiver-related side effects Latic acidosis, pancreatitis and fatty liverPeripheral neuropathySkin rashSkin, nail and hair problemsT-20: injection site reactions and other side effectsLipodystrophy and metabolic changes: fat loss, fat accumulation, glucose and diabetes Guide to side effects and complications CNS side effects: mood alteration,
anxiety, dizziness & sleep disturbance
Associated drugs: efavirenz (Sustiva), Atripla (contains efavirenz), rilpivirine (Edurant), Eviplera (contains rilpivirine). Other HIV drugs have also been linked to insomnia or mood changes, though very rarely.
The side effects affecting the central efavirenz in these studies because of nervous system (CNS) are only the side effects, you have about a 25% associated with efavirenz and rilpivirine (a chance that it could make it difficult to work as normal until you get used to Although case reports of similar side effects have been reported with Starting efavirenz or rilpivirine when you atazanavir/r, nevirapine, abacavir and have a few easy days or time of work other ARVs, these are very rare.
may reduce any anxiety. It may help if you are more relaxed and less stressed. There are several difficult things about these side effects. Efavirenz may be a difficult drug if you work shifts that require sometimes Firstly, nearly everyone will get some of working days and sometimes working these side effects but for most people nights. This is becasue most people they will be mild and easy to manage. routinely take efavirenz before they sleep.
This means that you may have some Many of the symptoms described strange dreams, or find yourself here can also be symptoms of HIV- daydreaming or getting more worried, or related diseases that are now seen you may get more upset than usual. less frequently such as dementia, TB Secondly, if you have been told about this or cryptococcal meningitis. These can before you start treatment, it will be easier develop slowly over time, so describing to manage and should be less alarming. symptoms to your doctor, in order that Information about what to expect before they can rule out these factors is very you start taking efavirenz (or rilpivirine) is Severe side effects
CNS side effects can occur after a few hours or after several days and are more Some people will experience these side common over the first few weeks of effects much more intensely. If this is the treatment. They generally become easier case, it is essential that you get more to tolerate.
support as soon as you need it. Perhaps 2-3% of people switch to a different About a quarter of people in the first treatment within a few days or weeks. efavirenz studies recorded serious CNS side effects. This definition included However, other people only chose to ‘difficulty carrying out daily work'. So switch after trying efavirenz for several although very few people stopped months. This is because although side effects usually get easier to tolerate, they Phoneline 0808 800 6013 may continue at a low level for longer Why these symptoms are associated with than the first few months.
efavirenz is not understood. It is also not Up to 20% of people may switch over the possible to predict who will experience more severe symptoms. CNS side effects can lead to or Reducing CNS side effects
exaggerate clinical depression, including Although you can take efavirenz with or suicidal feelings and clinical paranoia. It without food, a high fat meal can increase is very important therefore that you are drug levels by 60% and this can increase aware that such moods swings can be related to efavirenz and that you are not Taking efavirenz a couple of hours before you go to sleep, rather than at bedtime, • If you are feeling paranoid and makes it more likely that you will be worried about going outside, or have asleep when the drug levels are at their stopped seeing your friends as much, highest – about four hours after taking this may be related to efavirenz or rilpivirine side effects.
Haloperidol to reduce anxiety and • Some studies have cautioned sleeping pills to help with sleep against using efavirenz if you are disturbance may also help, although already depressed or have a history these have not been formally studied.
of psychiatric illness, but people without such a history have also found If you have difficult side effects with
symptoms difficult. efavirenz and you are not happy
with how you feel, then change it for
• Several reports have been published another NNRTI (nevirapine, etravirine)
of severe reactions in people with or to a protease inhibitor.
no previous psychiatric symptoms or You do not have to continue with efavirenz to prove anything to yourself • Some studies have linked higher or your doctor. If you know something efavirenz levels to low body weight. is wrong, don't worry about asking to Importantly, research in 2004 showed change to something else. that race may be important. A higher percentage of Africans metabolise Even if you have only used efavirenz for efavirenz more slowly. This results in a few days, if you know it is not for you, it higher doses than needed.
is okay to change. Some drugs are not for • Often side effects are related to high blood levels of efavirenz. Measuring drug levels with TDM can allow dose reductions without reducing the HIV effect of the combination or risking Guide to side effects and complications How to report symptoms
CNS symptoms include: Some of the symptoms associated with • Poor concentration, confusion and efavirenz are not easy to describe. abnormal thinking. Writing down the effects you experience • Mood swings including anxiety, will let you see whether they are getting agitation, depression, paranoia (feeling very anxious or nervous) and euphoria (feeling very happy).
• Keep a diary of how often your sleep • Disturbed sleep, including insomnia, drowsiness, vivid dreaming and • Try to describe this in a clear way. Is this every night or several nights a • Can you estimate how much time you sleep each night, and how much you • Examples of how your mood has slept in a normal night before you changed can give a clearer idea of started treatment? how you are affected.
Concentration and memory
Depression and feelings of suicide
• Are you finding it more difficult to • A small percentage of people who experience severe side effects have reported feelings of unexplained • Have you been aware of memory loss depression that are out of character, including suicidal thoughts.
Dreams and nightmares
• Symptoms at this level mean that it • How often do you have dreams or is critical to discuss this with your doctor in order to change to another • Do these disturb you sufficiently to leave you unsettled the next day? • If you are currently taking efavirenz, you may find it easier to talk to a close Mood changes
friend about how you feel and ask • If you get mood changes try to them to come with you for support describe these clearly in a diary. when you visit your doctor. There is • Have your family or friends noticed a never a problem with taking a friend or change in your behaviour, even if this family member with you whenever you is not clear to you? see your doctor.
Phoneline 0808 800 6013 "I tried efavirenz but it really was not for me. It was great at getting my viral load reduced, but the side effects were too difficult and I switched to etravirine.
Within days this was like lifting dark clouds and the sun coming out. I didn't realise how much efavirenz was affecting me until I changed it." Information about what to expect before you start efavirenz is essential.
Some African people clear efavirenz from their bodies more slowly resulting in higher drug levels and risk of side effects. Although many people use efavirenz without problems, this is a drug that is not for Guide to side effects and complications Hypersensitivity reactions (abacavir)
Associated drugs: abacavir (Ziagen). Trizivir and Kivexa both contain abacavir.
The main side effect associated with These symptoms are general and can abacavir is a hypersensitivity reaction be mistaken for many other illnesses (HSR) which occurs in around 5% of including cold, flu and chest infections, people. However, a screening test (called especially during the winter period.
HLA-B*5701), reduces this risk to less It is very important that if you get any of these symptoms after starting abacavir, This test is recommended for all patients you see your doctor straight away so that in the UK before using abacavir. hypersensitivity can be ruled out. A few HSR means that the body is oversensitive people who test negative for B*5701 may to the drug. Hypersensitivity reactions still get HSR. Even if you tested negative, can also occur with nevirapine, T-20, if you get these symptoms, then contact fosamprenavir and cotrimoxazole your doctor.
(Septrin). Genetic tests are only available If these symptoms get progressively for abacavir.
worse each day it is an indication that this Hypersensitivity reaction to abacavir is HSR. A rash is not always present.
occurs during the first six weeks of Do not stop taking your medication
therapy in over 90% of cases. Rarely, until you have seen a doctor and a
it can occur much later without any diagnosis of hypersensitivity has been
previous symptoms. You need to know the symptoms of If you stop using abacavir before you abacavir HSR before starting therapy, have seen a doctor with these symptoms even if the B*5701 genetic test indicates then you will not be able to restart, as a low risk. These include: hypersensitivity cannot then be ruled out. This means you will be reducing your future treatment options. • Rash – normally raised and differing in colour from surrounding skin If HSR is diagnosed by a doctor then abacavir will be stopped straight away. • Diarrhoea and abdominal pain These symptoms should then disappear • Tiredness and feeling generally unwell very quickly after abacavir is stopped. • Nausea and vomiting Abacavir must never be restarted
at any time if you have had the
hypersensitivity reaction, as this can
• Flu-like aches and pains including prove fatal.
Abacavir is one of the drugs in • Cough and shortness of breath the combination medicines Trizivir (abacavir+AZT+3TC) and Kivexa Phoneline 0808 800 6013 "I was diagnosed in January 2003 and my viral load was very high and my CD4 count was 60. When I started my treatment I used efavirenz, tenofovir, 3TC and Septrin. I developed a rash and called my consultant immediately. I was told to go to the clinic and then to stop taking Septrin. So this side effect was from the antibiotic and not the HIV drugs.
I continued taking my ARV's and had restless nights and vivid dreams. After two years my consultant changed my drugs because I was putting on weight.
I take my medication everyday, and the experience I have with these drugs is awesome, I call them good side effects. Why? Because I have a high libido, I become hyper energetic and it has increased my breast size (I know some people don't like that, but it is good for me). I used to have bad side effects. Now I can proudly say I'm not experiencing them anymore and I'm happy with my meds." Guide to side effects and complications Increased bilirubin, jaundice (yel ow skin/eyes)
(Bilirubin is a orange waste product; Hyper = increased; aemia = ‘in blood') Associated drugs: atazanavir (Reyataz); indinavir (Crixivan, rarely used).
An increase in bilirubin (called Two types of bilirubin hyperbilirubinaemia) is a common side effect of atazanavir. More than 50% of There are two types of bilirubin in the people who use this protease inhibitor, especially when boosted by ritonavir, will • Unconjugated (indirect) bilirubin is show increases in a laboratory test.
insoluble in water. This is the bilirubin This is not causing any damage to your before it reaches the liver body, until levels get higher than five • Conjugated (direct) bilirubin has been times normal.
converted to soluble bilirubin in the These increases are usually mild and liver. It then goes into the bile to be less than 10% of people switch to an stored in the gall bladder or sent to alternative drug. the intestines.
When symptoms are noticable, this Routine blood tests for total bilirubin includes your skin, or the white of the measure both unconjugated and eyes being more yellow. Many people like it because it can looks like a light sun tan.
Increases in bilirubin with atazanavir are Indinavir can also increase bilirubin, of unconjugated bilirubin. This is very
though this drug is rarely used.
common with atazanavir. What is bilirubin? People who have lower levels of the enzymes responsible for converting Bilirubin is an orange-yellow part of bile. bilirubin in the liver will be at a higher risk Bile is the bright green fluid secreted by of increases in bilirubin from atazanavir. the liver to help digestion.
This has been linked to genetic factors.
Bilirubin is mainly formed by the normal Increases in conjugated bilirubin are
breakdown of haemoglobin (the protein in linked with a range of illnesses and red blood cells that transport oxygen). conditions. This includes jaundice Bilirubin normally passes through the associated with hepatitis and cirrhosis, liver. It is then excreted as bile through anaemia, Gilbert's disease and sickle cell the intestines.
disease. Jaundice is common in babies. Very high levels in babies can cause When this process is interrupted, excess permanent damage. Atazanavir is not bilirubin stains other body tissues yellow. linked to increases in conjugated bilirubin.
Fatty tissues like skin, eye tissue and blood vessels are most affected.
Phoneline 0808 800 6013 Key points
• When related to atazanavir, higher
billirubin is not damaging your body • If this is too disturbing then it often disappears by using higher dose Normal lab levels
atazanavir without ritonavir Normal values may vary between • Check atazanavir levels with TDM.
different labs but are within the following Total bilirubin 3 to 17 mmol/L.
Direct bilirubin 0 to 3 mmol/L. Some people absorb higher levels of atazanavir and may not need the Jaundice only becomes visible at levels additional boost from ritonavir. above 40 mmol/L. You need good natural light to see this.
High levels of bilirubin may be a marker of high levels of atazanavir. You can't Atazanavir doesn't usually need to be guess this though–you need to use a test changed or the dose changed (of either called TDM (see page 19).
atazanaivr or ritonavir) unless bilirubin levels increase to five times the upper In practice, people who get yellow skin limit of normal (5xULN). This is at around or eyes when they use 300 mg/day 60–70 mmol/L.
atazanavir boosted with 100 mg ritonavir are often able to change to unboosted This yellowish skin can be unusual. When atazanavir (at 400 mg/day). Note that related to atazanavir though it is not the daily unboosted dose of atazanavir causing your body damage.
(2 x 200 mg) is a higher dose than the Less than 10% of people using atazanavir boosted dose (1 x 300 mg capsule).
discontinue because of jaundice. If you It is important that your doctor changes stop atazanavir, the jaundice reverses the formulation when not using ritonavir.
within a couple of days.
Atazanavir is available in four strengths: Using ritonavir as a booster
100, 150, 200 and 300 mg. This enables Just like many other protease inhibitors, your dose to be easily adjusted to atazanavir produces better results when manage high bilirubin. It is also available used with ritonavir.
as a powder.
• Ritonavir boosts atazanavir levels by Other drugs that affect bilirubin
around ten times and makes them Other drugs can also increase more consistent.
bilirubin levels. These include anabolic • Higher levels of atazanavir at the steroids, some antibiotics, anti-malaria end of the dose reduces the risk of drugs, codeine, diuretics, morphine, resistance and may make the drug oral contraceptives, rifampin and more active.
• Higher levels also increase the Drugs that can decrease bilirubin chance of increasing your bilirubin.
measurements include barbiturates, caffeine and penicillin.
Guide to side effects and complications Kidney health and renal side effects
Associated drugs: Drugs cleared by the kidney with potential for renal toxicity include
AZT, 3TC, FTC, tenofovir, atazanavir and maraviroc. Truvada, Atripla, Eviplera and Quad all contain tenofovir. Kidney stones can also occur with atazanavir and efavirenz. The kidney is a major organ that: Monitoring kidney function
• Filters salts and impurities from your Routine tests monitor kidney function blood to be cleared in urine.
before and after treatment.
• Regulates blood pressure.
High levels of protein or a waste product • Regulates oxygen levels in blood.
called creatinine, indicate that the kidneys • Helps bone health by processing may not be working well. Results from blood and urine tests Kidney function (also called renal calculate how well your kidneys are function) can be affected by HIV and other illnesses, including high blood Dipstick urine tests
pressure and diabetes.
Urine tests can show abnormal levels of In someone who has reduced kidney protein, blood, white blood cells, glucose function related to HIV (including HIVAN), and markers for diabetes. this can be improved by starting HIV Blood tests
Blood tests can measure protein and However, several HIV drugs can affect creatinine and are used to estimate your kidneys and the use and monitoring glomerular filtration rate (eGFR).
of these drugs should be managed individually. Kidney function generally reduces as we get older.
Estimated GFR is a common way to grade kidney function. It is measured in mL/min per 1.73 m2. Mild kidney disease often has no symptoms, but more advanced kidney Higher than 90 normal symptoms include: • Nausea and/or vomiting.
• Feeling tired, being short of breath.
• Needing to urinate more often, especially at night, or less often.
end stage stage 5 • Itchy skin.
An eGFR less than 60 is defined as • Muscle cramps.
Chronic Kidney Disease (CKD).
• Loss of appetite.
End Stage Renal Disease (ESRD) inludes • Swollen hands or feet (from retaining preparation for dialysis, transplant etc.
water) or numbness.
Phoneline 0808 800 6013 HIV drugs cleared by the kidneys
If you are using tenofovir, there is a also Several HIV drugs are cleared by a caution against using other drugs that the kidney. These include tenofovir, are cleared by the kidney.
3TC, FTC, AZT and ddI. The dose for It is not recommended to use creatinine these meds (and maraviroc in some supplements with tenofovir, as this will combinations) may need to be changed affect the interpretation of your monitoring depending on your eGFR level.
The prescribing information for each drug Kidney stones: atazanavir and
includes detailed information.
Tenofovir and kidney toxicity
There have been several reports of Tenofovir is one of the most widely used kidney stones that contained high levels HIV drugs and it is mainly processed of atazanavir or efavirenz, showing that by the kidneys. Although serious kidney this can be a rare side effect with these related side effects (including Fanconi's Syndrome) were reported in studies, Kindey stones were also linked to to these were rare. They also often reversed early protease inhibitor indinavir but this when tenofovir was stopped.
is now rarely used. The side effect of Tenofovir also changes laboratory kidney stones was reduced by drinking an markers such as reducing creatinine additional 1-2 litres of water daily.
clearance, low phosphate levels and Detailed information on kidney stones increased protein levels in urine (called and indinavir is online.
proteinuria). The importance of these changes in markers in the long-term is unknown, but it is likely to be more important if you already start with reduced kidney function.
Because tenofovir can also reduce eGFR compared to some other HIV drugs, it is not recommended in people who have eGFR below 75-80 if there are other HIV drugs to chose from. Similarly, if you are using tenofovir and your eGFR drops to this level, then switching to a different drug is Guide to side effects and complications Skin problems: rash
Many drugs are associated with rash including: abacavir (Ziagen, Kivexa and Trizivir),
FTC (Emtriva), nevirapine (Viramune), efavirenz (Sustiva), etravirine (Intelence), atazanavir (Reyataz), darunavir (Prezista), fosamprenavir (Lexiva/Telzir), tipranavir (Aptivus), raltegravir (Isentress) and T-20 (enfuvirtide, Fuzeon).
Although many drugs are linked to rash, Nevirapine rash with liver toxicity
the severity of rash and how long it lasts varies widely.
Nevirapine is linked to two different types of rash. One is the hypersensitivity-type With some drugs, if you develop a rash reaction, probably linked to genetic risk during the first few weeks of therapy you must report this immediately to your doctor. This is because it can sometimes The second is a rash that is related to lead to very serious reactions. liver toxicity, and this is more likely to be cause by an immune-related problem, These drugs are abacavir (Ziagen,
and from starting nevirapine at a high and in Trizivir and Kivexa), nevirapine
CD4 count. See pages 62–63 on liver (Viramune), efavirenz (Sustiva),
toxicity for more details.
etravirine (Intelence), fosamprenavir
(Lexiva) and T-20 (enfuvirtide, Fuzeon).
Things that can help
Other rashes are more likely to be mild • Bath or shower in cool or warm water and disappear without treatment, or can rather than hot water as this can be easily treated with antihistamine drugs irritate your rash.
such as cetirizine (Zirtek) or loratadine • Avoid heavily scented or coloured soaps and shower gels. Try to Atazanavir can cause a mild rash during
use products that are marked the first two months in 10% of people hypoallergenic or wash with aqueous but this disappears without additional treatment within a few weeks.
• Use liquids and not powder to wash FTC studies reported rash on the palms
your clothes as tiny amounts of of the hands or feet in up to 10% of powder can build up on your clothes. African Americans, but these have been Try using non-biological makes that reported less frequently since the drug are designed for sensitive skin.
has been licensed. • Wear cool fibres such as cotton rather Although antihistamines are available than synthetic ones. When possible over the counter, it is important that you at home wear as few clothes as check with your doctor or pharmacist before taking them, as there can be • Try not to use too many bedclothes. interactions with HIV drugs. Keep as cool as possible in bed as A rash can also occur as a reaction from being too warm can irritate your rash. exposure to the sun, and will normally Again, use natural, cool fibres such as resolve. Any rash that makes you feel sick may not be a side effect but a symptom of • Calamine lotion can be soothing when an underlying disease (such as scabies).
a rash is irritating.
Phoneline 0808 800 6013 NNRTI rash (nevirapine, efavirenz
and etravirine)
Up to 20% of people using nevirapine,
efavirenz or etravirine, can experience a mild to moderate rash in the first weeks of treatment. For most people this disappears over the next few weeks and they experience no further side effects. Less than 5% of people stop an NNRTI because of rash, Anything more than a mild rash may
and less than 1% people (0.1–0.5%) get require stopping nevirapine – but only
a severe (grade 4) rash.
on the advice of your doctor.
Women are at a higher risk of rash with More serious rash (0.3% with
nevirapine (and perhaps etravirine) than nevirapine, 0.1% with efavirenz, less
men. Women should not start treatment than 0.1% with etravirine) can be life-
with nevirapine if their CD4 count is over 250 cells/mm3 or men if their CD4 count Stevens-Johnson Syndrome (SJS) is
is over 400 cells/mm3.
a severe hypersensitivity rash and
Nevirapine needs to be dosed in two stopping treatment is essential. This
stages. For the first two weeks, you is why a rash needs to be seen by a
should only take one 200 mg tablet, once a day. After the first two weeks the dose Abacavir and rash
increases to two 200 mg tablets daily, split into one tablet every 12 hours. The A rash can sometimes be one of the dose should NOT be increased though if symptoms of the hypersensitivity reaction there are any symptoms of rash.
associated with abacavir (also in Ziagen, Kivexa and Trizivir) that occurs in 4-5% of If you get a rash with nevirapine, you people using abacavir.
should make sure your doctor checks this carefully. Everyone starting nevirapine It is essential that you see your doctor
should visit their clinic every two weeks if a rash appears when using abacavir
for the first two months to check for liver in a combination.
toxicity (see page 40), so getting a rash See pages 48 for more details on this
examined should be very easy. Guide to side effects and complications Skin, hair and nail problems
Associated drugs: indinavir (Crixivan, rarely used), 3TC (Epivir), hydroxyurea (Hydrea,
rarely used), AZT (Retrovir, nail discolouration) and FTC (Emtriva, skin discolouration) Problems with hair, nails and dry skin are Hair loss
mainly related to older HIV drugs.
People have reported that the thickness and quality of their hair changed while Dry skin, chapped lips and nail problems using indinavir – usually becoming thinner are a problem for HIV positive people but – and this has been reported for both this is often more related to HIV than HIV head and body hair. Indinavir is rarely used to treat HIV.
Indinavir was particularly linked to skin, Balding patches of head hair, called nail and hair problems. As this drug alopecia, have also been reported, is now used so rarely, switching to an though rarely, with 3TC.
alternative is the first option.
Nail and skin pigment problems
All the measures listed about rashes are Paronychia (inflammation around the helpful where dry skin is a problem, along finger nails) and ingrown toe nails have with the use of emollients (moisturisers) both been reported as rare side effects such as aqueous cream, diprobase, with indinavir and 3TC.
oilatum, and balneum. Try to drink plenty of fluids as well.
Many of the people using indinavir are likely to have also used 3TC - so the Vitamins and a healthy diet are also cause and contribution of each drug is important for better skin health.
Where rashes and dry skin are If you are using indinavir consider unmanageable with medications or switching to another drug.
simple interventions then ask your doctor to change the medication that is AZT can darken nail and skin pigment in Africans and African-Americans.
You can also ask to be referred to a FTC (emtricitabine, Emtriva) has been reported to cause pigment changes (mainly to the palms of the hands or soles Chapped lips have been linked
of the feet) in African people. to indinavir in a similar way to dry skin. Regularly using a lip balm and FTC is included in Truvada, Atripla, checking indinavir blood levels are both Eviplera and Quad.
Phoneline 0808 800 6013 Guide to side effects and complications Peripheral neuropathy
(peripheral = furthest away; neuro = nerve; pathy = damage)
Associated drugs: ddC (Hivid), d4T (Zerit), ddI (Videx), 3TC (Epivir)
Peripheral neuropathy (PN) is rarely Alcohol, smoking, amphetamines, reported with modern HIV drugs.
deficiency of vitamins B12 and E and other illnesses like diabetes and syphilis It was a common side effect from some of can also cause and make neuropathy the first anti-HIV drugs. It is still is major worse; B12 and folate levels can be problem in countries that continue to use d4T (stavudine). Can PN be measured?
PN can be caused by HIV, especially at low CD4 counts (under 100 cells/mm3). Simple tests for neuropathy include It is also a complication of diabetes, and comparing ankle to knee reflexes, or rates of diabetes are increasing as people using a pin to test sensations from living with HIV get older. the toes up the leg. A tuning fork will It is sometimes difficult to know the show a reduced vibration in a foot with cause but if the numbness or pain is symmetrical in both hands or both feet Recent studies have measured nerve it is more likely to be a side effect than damage in skin in a biopsy sample.
related to HIV.
Your doctor may just rely on what you Symptoms include increased sensitivity or report is happening. If your symptoms are numbness, or tingling in your hands and/ causing you discomfort or pain, you must or feet. Often it is something you hardly make sure it is taken seriously. notice, or that comes and goes. Sometimes doctors underestimate how If neuropathy gets worse it can become much pain people experience because very painful. It is a side effect that you they think that their patients always should take very seriously.
exaggerate pain. In fact, most people PN is mainly associated with nucleosides, underestimate pain when talking to their especially the ‘d' drugs. These are ddC (no longer manufactured), ddI, d4T and Sensitivity tests that measure your more rarely with 3TC. reactions to different pressure are not Using more than one of these drugs used so frequently, and it can sometimes together can increase the risk as can take 4-6 weeks to get the results. Getting use of other drugs such as hydroxyurea, these results recorded regularly though dapsone, thalidomide, isoniazid and can help you measure any worsening of Phoneline 0808 800 6013 pain management clinics include a wide range of treatments and expertise Is neuropathy reversible?
They do not reduce the pain, but change If you switch treatment early when the how your brain perceives it. Even when side effects are still mild, PN may reverse, they help they can be difficult to tolerate but this does not happen for everyone. because of they also cause drowsiness. Moderate and severe neuropathy very Opiate-based painkillers such as codeine, rarely resolves fully but switching drugs dihydrocodeine, fentanyl, methadone, can stop the symptoms getting worse. morphine and tramadol sometimes help Once established, neuropathy can be when the pain is severe.
irreversible and debilitating.
Although not always appropriate for After switching, you may have to wait neurological damage, they sometimes several months to know if this helped. help. It can take several days to find the Often symptoms get worse before you appropriate dose, and these drugs can notice an improvement.
interact with some HIV drugs. A side effect of opiates is constipation.
Treatments for neuropathy
Cannabis (marijuana), or synthetic There are currently no approved versions such as nabilone (Cesamet) or treatments to repair or regrow damaged dronabinol (Marinol) reduce pain related nerves. One study has shown that to neuropathy. They can be prescribed in acetyl-L-carnitine (Alcar) at a dose of 1500 mg, twice daily, can lead to nerve Capsaicin patches that contain chilli improvement, but this did not improve pepper are available in the UK.
pain. Very few clinics in the UK use acetyl-L-carnitine but it can be prescribed You should also have appropriate care on a named-patient basis.
from a pain control nurse specialist, rather than your HIV doctor. They will be Research into a synthetic human Nerve able to make a full assessment of your Growth Factor (hNGF) was stopped many level of pain, and adequately prescribe medication to reduce it.
Painkil ers
More rarely, when pain is so great that it Treatments prescribed to manage is not treatable, alcohol can be injected neuropathy are only used to mask the into a nerve junction. Nerve blocks can be pain. The side effects of these painkillers very effective when they work, and are a can make them difficult to use.
specialist procedure, but can also cause loss of sensation and sometimes produce Amitriptyline, nortriptyline (tricyclic antidepressants) and gabapentin and pregabalin (antiepileptic drugs) are used Other treatment approaches are listed to treatment neuropathic pain. on the next page, though there is limited research to support some of these.
Guide to side effects and complications Alternatives to painkil ers?
Alternative options may be a more
Voltarol (NSAID) – a nonsteroidal anti-
acceptable and effective way to manage inflammatory drug.
Alpha-Lipoic Acid – 600 to 900mg
Although not always proven in studies, daily may help protect nerves from there is anecdotal reports on these approaches. With a condition that is Cod liver oil – One or two tablespoons a
painful, it is worth trying each of these in day has anecdotally produced beneficial case they help (though not all at the same reports, especially if the symptoms have not become very severe. This is not as Acetyl-L-carnitine (Alcar) is a
bad as it sounds as modern oils are supplement that has been effective in palatable and also come in flavours.
small studies and anecdotally. Other Topical aspirin – suggested in one
studies did not find a benefit. recent study that aspirin, crushed and Acupuncture is annecdotally reported to
dissolved in water or gel and applied to improve quality of life but not supported the painful area can relieve symptoms.
by research. A study comparing Vitamin B6 (pyridoxine) – requires
acupuncture to placebo showed no caution with dosing as B6 can also benefit, but the acupuncture was a worsen neuropathy (100mg daily is standardised rather than individualised treatment. This is one you need to decide for yourself.
Vitamin B12 – available as injections,
lozenges, or nose-gel. B12 levels should Magnets – Using magnetic insoles have
be checked by your doctor. Dosage reported benefits in diabetic-related varies but if levels are too high this can neuropathy, although a published study worsen neuropathy.
found little difference compared to placebo (sham) insoles. Magnesium – 250mg – 2 capsules each
Local anaesthetic creams such as
Lidocaine (5%), and Lidocaine patches Calcium – 300mg – 2 capsules each
reported benefits in recent studies.
Capsaicin – Patches made from chilli
peppers that causes increased local blood flow when applied to the skin. Although approved in Europe the FDA in the US did not approve the Qutenza patch for HIV neuropathy. This was because the studies did not show a clear Phoneline 0808 800 6013 Other suggestions
• Avoid tight fitting shoes and socks
which restrict blood circulation.
• Keep your feet uncovered at night - keeping them cooler and out of contact with sheets or bedding.
• Try deep tissue massage.
• Don't walk or stand for long periods.
• Soak your feet in cool water.
Neuropathy can be very painful and Useful recommended reference books written in non-technical language are debilitating. ask for Numb Toes and Aching Soles (July 1999) and Numb Toes and Other Woes (July a referral to a pain 2001) both by John A. Senneff. ISBN: 0967110718 and 0967110734.
management clinic.
Lark Lands has led community-based research in the use of nutrients, diet and supplements for PN. This comprehensive overview is recommended: • Change HIV drug(s) that are responsible • Acetyl-L-carnitine (Alcar) • Cod liver oil larktreatments.htm • Painkillers such as gabapentin, Neuropathy Trust (UK) offer information amitriptyline or nortriptyline (or marujuana) may mask symptoms • Referral to a pain management clinic is Neuropathy Association (US): important and can access a wider range Guide to side effects and complications Liver-related side effects
Associated drugs: nevirapine (Viramune), ritonavir (Norvir), tipranavir (Aptivus).
Most anti-HIV drugs have potential for liver toxicity.
Your liver is generally a strong organ. Its protease inhibitors or NNRTIs, you may job is to filter chemicals from your blood. need to use a lower dose. It usually does this very well. When taking anti-HIV drugs you should A lot of people worry about the perceived report any side effects to your doctor. damage that medications can have on the Especially if you have abdominal pain, liver. Most drugs however, including HIV nausea and vomiting, yellowing of the drugs, are actually easily filtered without skin or the whites of the eyes. causing problems. Where liver toxicity is suspected, the But routine blood tests will check your drugs will normally be stopped to allow liver enzymes (ALT and AST). Liver the liver to rest and return to normal. toxicity becomes a more complicated When the liver tests have returned to problem when alcohol use or viral normal HIV drugs may be restarted. This hepatitis have damaged the liver. is often with a different combination of drugs or reduced doses.
A few HIV drugs, including nevirapine, have been linked to liver problems. If this is the case, then the information leaflet The risk of nevirapine-related liver toxicity that comes with your meds includes a is different between men and women. ‘black box' warning. Liver toxicity has also This risk is related to CD4 count when been reported with efavirenz. Ritonavir starting treatment.
and tipranavir (due to the higher ritonavir dose) are also linked to liver toxicity.
Women starting treatment for the first time should not use nevirapine if their The following factors can increase the CD4 count is over 250 cells/mm3 and risk of liver complications from HIV men should not use nevirapine if their CD4 count is over 400 cells/mm3.
• Viral hepatitis: hepatitis A, B or C (or These CD4 upper limits are not thought other liver disease).
important if you already have an • Increased alcohol consumption.
undetectable viral load and are switching • Use of other drugs, including one of your current drugs to nevirapine. recreational drugs, that are toxic to They do not relate to pregnant women who are using a single dose of nevirapine • Gender: women are more prone to as part of treatment to reduce the risk of liver problems with HIV drugs.
transmitting HIV to their baby.
Your doctor will normally test your liver Close monitoring (every two weeks) function at the same time as testing CD4 in the first two months of therapy is count and viral load. recommended for anyone who starts a nevirapine-based combination. This is If you have hepatitis or previous liver when liver problems first start to occur. damage, therapeutic drug monitoring Liver toxicity may also build up slowly and (TDM) should be used if you are using 62 Phoneline 0808 800 6013 so routine monitoring after the first two months is also important. Nevirapine must be taken as one tablet (200mg) once daily for the first two
weeks. Only if you have none of the symptoms do not progress or your liver function listed below and your liver function tests tests get worse. are within the acceptable levels can you increase your nevirapine dose to one If your liver tests get to five times the tablet (200mg) twice a day.
normal limit or mild symptoms get worse, then your nevirapine must be stopped. Blood samples should be taken every Your doctor will recommend whether you two weeks in the first two months to need to stop all your treatments or just check liver function, then at the end of the switch the nevirapine to another drug.
third month, and then every three to four months if they are within normal limits. If you stop nevirapine for these
reasons, you must not take it again in
During this first eight weeks you should the future.
contact your doctor straight away if you have any of the following symptoms: Hepatic steatosis/fatty liver
Hepatic steatosis is a medical term for • Blistering of the skin – seek ‘fatty liver'. This can develop from alcohol immediate medical attention use, hepatitis, obesity and drug toxicity with the family of HIV drugs called NRTIs • Facial or general swelling This build-up of fat in the liver can affect the way it processes fats. Hepatic • Flu-like symptoms, aching muscles or steatosis often also leads to lactic acidosis (see page 64). People who weigh over 70 kgs, especially women, Your doctor will do another liver function may be more at risk of developing hepatic blood test if you have one of these steatosis and lactic acidosis. Ultrasonography is a sensitive, accurate, If the results are not higher than twice non-invasive screening tool to detect the normal limit, and depending on the steatosis as this is not always shown in severity of your symptoms, a decision liver function tests. will be made whether or not to continue with nevirapine. If a decision is made Steatosis is also common in HIV positive to continue, you will be very closely children. It has no impact on disease, monitored to ensure that the symptoms testing or management. Guide to side effects and complications Lactic acidosis and pancreatitis
All nukes (d4T, ddI, abacavir, tenofovir, FTC, 3TC, AZT), hydroxyurea and ribavirin, have
been linked to reports of lactic acidosis and/or pancreatitis. PIs and efavirenz have also been associated with pancreatitis.
Lactic acidosis
Lactic acidosis is a very serious side The pancreas is the organ that produces effect that has almost disappeared from enzymes to help the digestion of food in countries that no longer use d4T, ddI and the stomach. It also helps regulate insulin AZT. Although other nukes are linked to which controls the levels of sugar in your lactic acidosis one or both of these nukes are linked to most cases. Pancreatitis means inflammation of the Symptoms include: • Unexplained tiredness, often severe. It an uncommon or rare side effect of some HIV drugs including 3TC, d4T, ddI, • Sickness (vomiting) and nausea. hydroxyurea (rarely used) and is a very • Pain in the stomach, abdomen and/or rare side effect of Septrin. It can also be caused by gallstones, • Unexplained weight loss.
excess alcohol, other medications or • Difficulty breathing.
• Poor blood circulation – cold hands or Triglycerides higher than 10 mmol/L, feet or bluish skin colour.
increases the risk of pancreatitis and needs to be promtly managed. • Sudden peripheral neuropathy.
Pancreatitis can still occur when Treatment and monitoring
triglycerides are 5-10 mmol/L. Early diagnosis is essential – and Pancreatitis can also be hereditary contacting your doctor if you have any of the symptoms is important. HIV Symptoms and diagnosis
treatments may need to be stopped immediately depending on blood levels. Symptoms include upper abdominal pain with severe nausea and vomiting. More info
Blood tests measuring amylase lipase are More detailed information on lactic
usually checked to confirm a diagnosis of acidosis is included online.
Measuring faecal amylase (FE1) shows whether pancreatic enzymes need to be This includes a 6-page leaflet with information on how to minimise ISRs and Pancreatitis can be fatal if not treated tips for how to mange other aspects of an early. If it is a side effect of HIV drugs, these medications need to be changed.
Phoneline 0808 800 6013 T-20: injection site reactions (ISRs) and other
side effects
Associated drugs: T-20 (enfuvirtide, Fuzeon) T-20 was approved in 2003 in Europe People who used T-20 successfully as a and was the first entry inhibitor. This type life saving treatment have usually been of drug works against HIV before it gets able to switch safely to these newer inside a CD4 cell.
drugs, which are generally easier to take.
T-20 is a more complicated treatment If resistance develops to the newer drugs because it is not an oral drug. T-20 is though, T-20 is still an important option.
given by subcutaneous injection, twice- The main side effects from T-20 include daily. These are injections under the skin, injection site reactions. Other side not into a vein or muscle.
effects include bacterial pneumonia, However, if you need to use T-20 as a hypersensitivity reactions, and mood life-saving drug, it will work against other changes (euphoria).
drug resistant virus. As with any drug, it needs to be used in combination with other active drugs.
More detailed information on T-20 is
In 2012, very few people are still using T-20. This is because newer drugs, including raltegravir, darunavir and This includes a 6-page leaflet with etravrine, also work against drug resistant information on how to minimise ISRs and tips for how to mange other aspects of an Guide to side effects and complications Lipodystrophy and metabolic changes
(lipid = fat; dystrophy = disorder)
Lipodystrophy is a medical term referring What are the symptoms?
to changes in body fat. There are three broad sets of When this is part of a set of symptoms lipodystrophy symptoms: related to HIV treatment, it is usually linked to other metabolic changes. • Fat loss (from legs and arms leaving veins more prominent, also from The word ‘metabolic' refers to how your buttocks and the face).
body processes food into energy. This includes the production, regulation and • Fat gain (in the stomach, breasts in storage of fats and sugars.
both women and men, shoulders, neck and sometimes small lumps of Although doctors are now aware of fat under the skin (called lipoma).
lipodystrophy as a side effect, you may still have to take an active role in getting • Metabolic changes that affect the way the best monitoring and care.
your body produces and processes fats and sugars.
The mechanism that causes fat loss is now understood. Hopefully, over the next Any information about lipodystrophy few years, research will discover the needs to specify which of these cause(s) of metabolic fat gain. symptoms are being discussed.
Each symptom is thought to have a different mechanism. You can have one symptom without the others.
Even when symptoms are generally linked to one class of drug, the effect of each drug can be very different.
Lipodystrophy is likely to be the result
of several different factors rather than
any single cause.
These include your HIV treatment history,
individual drugs, lowest CD4 count, age, diet, exercise and family health. These changes have been reported in men, women and children from a wide range of racial backgrounds.
Phoneline 0808 800 6013 How many people are affected?
Monitoring changes in fat
Many people are unlikely to notice any changes in body shape. Lipodystrophy There are several ways that changes in occurs more rarely with current drugs body fat distribution can be measured compared to the earliest HIV meds. and monitored.
The benefits from treatment still outweigh • Most people are sensitive to physical the risks. For most people any changes changes in their body. This means are likely to be mild. However, for a that ‘self-reporting', perhaps with minority, problems are more serious. careful measuring by a dietician, or photography can record any changes.
Preventing lipodystophy is more important and more successful than trying to treat • Some HIV clinics have access to lipodystophy after it has developed. scanning equipment, but unfortunately lipodystrophy is rarely monitored in As no one can predict who will be this way. MRI and DEXA scans look affected before starting treatment, careful at the breakdown within your body of monitoring is important. You use try fat and muscle. A test called BIA (Bio switching to other HIV meds if you get Impedance Analysis) are sometimes symptoms with your first combination.
used. (See side box on Monitoring • Getting a DEXA scan, or well-lit photo, even if you only have slight changes, will give you a reference to know how quickly symptoms are progressing or improving. Some specialist clinics, including the lipodystrophy clinic at St Thomas' Hospital in London, provide baseline DEXA scans to all patients. You can self refer to this clinic.
• As with your CD4 and viral load results, a single test result may only provide limited information. You are likely to need several tests over time to monitor changes.
If you are worried that you have lipodystrophy, make sure this is taken seriously. You should be offered monitoring and have any treatment choices explained.
Guide to side effects and complications Using combinations without nucleosides Changing treatment can sometimes is one new strategy that is being studied. reverse fat loss, see pages 70–72.
Another might be to use an entry inhibitor or integrase inhibitor instead of a PI or Studies to reverse metabolic fat gain, had less success, see pages 74–75. Switching to drugs that have less impact but just because studies haven't shown on blood lipids can help with cholesterol a benefit, it doesn't mean that another and triglycerides, treatments will not be better for you. Whether you decide to change treatment It will be much easier to know if the switch has worked if you have been monitored before you make any change. • Your treatment history, and Even if this does not reverse the
• How badly the lipodystrophy is symptoms, changing to a different
affecting you.
drug or combination may stop the
Any new combination will need to be just symptoms getting worse.
as effective against HIV. Phoneline 0808 800 6013 DEXA scans cannot show whether trunk The following tests can monitor changes. fat is visceral (around the organs inside Having a measurement before starting your abdomen) or subcutaneous (love treatment will make it easier to interpret handles - under the skin but outside the abdomen). Visceral fat is most associated with HIV-related fat accumulation.
Measurement: careful measurement by
a dietician using callipers can be useful MRI scan (Magnetic Resonance
if nothing else is available. This may be Imaging): these scans are much less
useful for fat increases but will be less readily available and the equipment sensitive for fat loss. Results may vary required is more sophisticated and depending on the dietician. Measurement expensive. An MRI scan provides a by callipers is not sensitive for small computer image of the tissues, muscle changes. Waist circumference (over 102 and bone in a cross-section of any part of cm for men and 88 cm in women) and your body. An MRI scan can show how fat waist:hip ratio (higher than 0.95 in men is distributed – whether it is subcutaneous and 0.90 in women) are also used.
(under the skin) or visceral (around your central organs) – and is very accurate at DEXA (or DXA) scan (Dual X-ray
measuring any changes.
Absorptiometry): these scans are
available at most main hospitals as they Bio-electrical Impedance Analysis
are routinely used for checking bone changes as people get older. You lay BIA is a simple painless procedure that on a flatbed scanner for 5–20 minutes calculates the percentages of fat, muscle (depending on the scanner) for a full body and water in the body according to height, scan. Your head is not scanned. The weight, sex and age. results provide a breakdown of your body It has mainly been used for HIV-related composition into fat, bone and muscle. wasting but may also be useful in Some doctors would like a DEXA scan before any HIV treatment is started, and repeated annually to monitor for changes.
Weight in people with lipodystrophy is
generally stable. Fat redistribution (rather DEXA scans can show the percentage than weight gain or loss) is usually the of body fat in each main section of your issue. However, weighing yourself is body - in each arm, leg, your head and important in case you have lost or gained your trunk. An important limitation is that weight without realising it.
Guide to side effects and complications Fat loss (lipoatrophy)
Associated drugs: d4T (stavudine), AZT (zidovudine, Retrovir), possibly efavirenz (Sustiva).
be very low in Western countries. Newer drugs do not cause this side effect, and Lipoatrophy is the medical term for increased monitoring should pick this up if fat loss. Some researchers see this you are using older drugs like AZT.
as the main symptom of HIV-related Neither d4T or AZT are recommended as routine first-line therapy in the UK, unless Symptoms include loss of fat from specific health complications require it. under the skin on your arms and legs, People currently using either of these which can make your veins look more drugs should be offered alternatives.
prominent. It also includes loss from the face, especially sunken cheeks and Other HIV drugs and fat loss
Some studies reported a higher risk of Fat can be lost from the soles of the feet fat loss when d4T or AZT were used with making walking more painful and tiring.
protease inhibitors. Role of d4T and AZT
The US study ACTG 5142 reported higher rates of fat loss in people using efavirenz Clinical lipoatrophy - where you can see compared to lopinavir/r, even when use a change in body fat - is common after of nucleosides were taken into account. using either d4T or AZT for more than six These findings are not fully understood.
months. Both drugs affect the way that fat cells are produced and develop. Several studies have reported higher rates of lipodystrophy in people using At a cellular level this can occur after only combinations that include three drug a few weeks or months of treatment. classes–nukes, NNRTIs and PIs.
Nucleosides (nukes) have been shown to damage the energy producing part of healthy cells called mitochondria. Switching d4T or AZT to either abacavir or tenofovir, or using other combinations In most studies, d4T damages fat cells at of drugs, can reverse the fat lost in limbs. around twice the rate compared to AZT. d4T may also lead to lipoatrophy that is Reversing fat loss from the face or more difficult to reverse because it may buttocks is more difficult, but this may be damage cells at an earlier stage of their possible if you switch treatment early.
Switching is very safe, but the choice Other nukes?
of new drugs needs to consider your previous treatment history to minimise the Not all nukes cause lipoatrophy. This is risk of drug resistance. not a side effect of 3TC, FTC, tenofovir and abacavir. The role of ddI is unclear.
Any reversal of the fat loss is likely to take at least six months to become noticeable. The risk of lipoatrophy for people who are This is because these symptoms starting their first treatment should now Phoneline 0808 800 6013 Figure 3: Visual scale to grade HIV-related facial lipoatrophy
Note: Zygoma = cheekbone. Source: St Stephens AIDS Trust, Chelsea and Westminster Hospital developed slowly and if they are going to reverse this will also take time. New-Fill (polylactic acid, PLA) has In studies where people switch, shown promising results in correcting the approximately +0.3 kg can be detected effect of facial fat loss and is approved by scans at 6 months. In one study it in the US as a treatment for HIV-related took about two years (with an increase of lipoatrophy. Most people require 4-5 +1.3 kg) before these patients noticed a sets of injections but severe cases may require more sessions.
New-Fill does not replace fat but Many substances have been used to generates new collagen growth. This treat HIV-related fat loss in the face but gives the effect that your skin grows very few have been carefully researched. thicker, sometimes by up to 1cm. This Many of these are used without approval process continues for several months for treating HIV-related fat loss.
after the injections have finished. Although non-permanent products need New-Fill has also been used to correct fat top-up treatment, these are currently lost on the soles of the feet.
the safest option. They work with your New-Fill is available free on the NHS in natural ageing process. Unlike permanent many of the larger HIV clinics in the UK. implants, there is no risk of it moving.
These include Brighton, Manchester, and In the US, only New-Fill and Radiesse any patient attending a London clinic. have been approved to treat HIV-related Since 2005, New-Fill has been available facial lipoatrophy.
free on the NHS for any patient registered at a London clinic. In the UK, New-Fill is the most widely used, and as it is approved by some UK HIV treatment guidelines recommend NHS trusts, we focus on this product in that corrective treatment or surgery this guide. It is also supported by the should be provided on the NHS. strongest safety and efficacy results. Guide to side effects and complications Further info: a US community site with information on lipoatrophy However, New-Fill is not equally available Anyone who has used BioAlcamid should throughout the UK. You may have to inform their dentist about their implants lobby you doctor and NHS trust. You may and not have dental injections close to decide to register at a new HIV clinic to the implant site.
access this treatment.
Other complications have been reported Private treatment costs vary by clinic. from trauma. Do not take up boxing or Private treatment should ONLY be from a contact sports.
practitioner with experience treating HIV- BioAlcamid has probably been used by several hundred people in the UK, and Other injectible compounds
several thousand people in Europe and the US. Information is difficult to assess because this was largely in private clinics.
A second non-permanent filler approved in the US to treat HIV-related facial Other approaches try to inject or implant fat loss is called Radiesse. This is the material (fat or silicone) and hope it will trade name for a formulation of calcium stay in position. Very often, it disperses, hydroxylapatite suspended in a gel.
moves or appears lumpy. Although this is used in some private Silicone injections are dangerous and clinics in the UK, it is not approved by the ineffective and were banned in the US London commissioners as a free NHS many years ago.
A fine grade formulation called Silikon 1000 Microdroplets was studied in the Bio-Alcamid (polyalkylimide, Polymekon) US but further results were not available is a ‘gore-tex' filler that was used briefly when updating this guide.
but has now been linked to serious complications in 10% people. These Fat transfer (Coleman technique)
relate to infections in the implant, often Fat transfer involves extracting fat from years after the procedure. one body site and reinjecting it surgically BioAlcamid no longer being used in another. This is usually subcutaneous or recommended in many countries fat from the stomach, which is then including the UK.
transplanted to the face. Although the manufacturer claims that Fat related to lipodystophy (ie shoulder BioAlcamid can be removed, it is a fat) should not be transplanted.
permanent implant because removal Although results are very good the is traumatic and becomes increasingly process is now less frequently used. difficult over time.
This is because it is involves invasive, traumatic and expensive surgery.
Phoneline 0808 800 6013 "I was very worried about the fat accumulation in my abdomen. Not only because of my physical appearance but also because the pressure from inside and the feeling of being full were very unpleasant.
I decided to do something about it. I looked for information at an AIDS organisation, then I talked to my doctor. I changed treatment, and my diet - more fruit and veg. Aerobic exercise really helped. Swimming and cycling are my favorite activities. I have started to feel better and I'm happier when I see myself in the mirror." Guide to side effects and complications Fat accumulation
Associated drugs: nukes, NNRTIs, protease inhibitors, possibly integrase inhibitors
HIV-related fat accumulation seems to Fat accumulation can occur in the be due to your body signalling itself to abdomen, breasts, neck and shoulders. produce more fat. Dietary fat is not the
It can occur in both men and women. only mechanism, but high fat diets are Small bumps or collections of fat, called unlikely to help. Whatever the cause, lipomas, can occur under the skin in other diet and exercise seem to be useful in
parts of the body including the pubis. A helping reverse these changes.
hard fatty lump in a mans breast is called Anabolic steroids are not recommended
for fat accumulation as they could worsen Abdominal fat can be visceral or fat loss in other parts of the body. subcutaneous. Visceral adipose tissue Metformin can reduce central fat
(VAT) is fat that is around the organs accumulation in people who already have inside the abdomen. Subcutaneous insulin resistance but should not be used adipose tisue (SAT) is fat under your skin if you have a low BMI.
(‘love handles'). Recombinant Human Growth Hormone
With visceral fat your stomach wall is (rHGH) can reduce visceral abdominal
pushed out from inside. Your stomach fat and fat pads from the back of the neck muscles can sometimes be quite defined, and shoulders. Side effects, including the but your stomach will still be extended.
risk of insulin resistance and diabetes, In severe cases, this can compress your are reduced using lower doses in more internal organs and interfere with normal recent studies. Fat accumulation appears functions like breathing and eating.
to return if rHGH is stopped.
In these cases there is a greater medical A Growth Hormone Releasing Factor urgency to reverse the fat accumulation. called tesamorelin (formerly TH-9507,
This may help you access treatments like tradename Egrifta) that can reduce growth hormone releasing factor (GHRF, visceral fat by 20% was approved in the tesamorelin), growth hormone (rHGH) or US in 2010. It had less side effects than to switch to drugs like T-20 or raltegravir.
rHGH but there is no long-term data (maximum one year).
Treatments for fat accumulation
Tesamorelin is a continual treatment and Diet, exercise and some treatments may fat returns if the treatment is stopped. A help. Using more than one approach may lower maintenance dose of tesamorelin be important. For example, using diet and has not been established.
exercise in addition to anthing else that Neither tesamorelin nor rHGH are approved in Europe as treatments for Diet means having a healthy balanced lipodystrophy. However, rHGH can be diet. It does not mean you should prescribed off-label on an individual dramtically cut calorie intake, which patient basis. Tesamorelin is unlikely to makes fat loss more difficult.
be approved in Europe in the near future.
Phoneline 0808 800 6013 Figure 4: Illustration of MRI scans, fat shows as white areas
(a) HIV-related fat accummulation (lipohypertrophy) (b) No lipodystrophy fat (love handles) Visceral fat inside abdomen pushes against Sub-cutaneous fat is ‘normal' fat just under organs and muscles the surface of the skin Neck, shoulders, breasts and
Women with lipodystrophy may have higher levels of testosterone than either HIV positive women without lipodystrophy Removing fat from the neck or shoulders or HIV negative women. It is not clear using liposuction has worked well for whether this is due to high insulin levels some people. The results were sustained associated with lipodystrophy, although in 50% of people but fat returned after a link between the length of time on several months in 25-50% of people. PI-therapy (but not other drugs) and a There may be a higher likelihood of a greater chance of higher testosterone permanent result if at the same time, was found in one study.
HIV treatment is modified and diet and Switching HIV drugs
exercise changed. Studies switching individual drugs have Unless the underlying metabolic been less helpful with fat accumulation mechanism is altered, fat accumulation than with fat loss. In theory, if one may return after several months.
particular drug is linked to these body Liposuction cannot be used for visceral changes then it is very reasonable to at fat accumulation in the abdomen.
least try another one, in case this works Anecdotally, testosterone cream massaged onto the fat pads reduced If you change your combination, you have fat pads on the shoulders. A lower dose to change it to one that is just as effective should be used for women than for men.
against HIV.
Liposuction and surgery are also used There have been anecdotal reports and to reduce breast size in both men and case studies of people whose shoulder and/or abdominal fat decreased after Breast lumps (gynaecomastia) in men switching to atazanavir. A general benefit has been mainly linked to efavirenz, was not seen in a larger study.
so switching treatment is a first option. Fat accumulation does not seem closely Dihydrotestosterone gel (Andractim) may related to high blood lipids. So far, newer drugs that affect lipids less (unboosted atazanavir, nevirapine, raltegravir and T-20, maraviroc) have not shown reduced rates of fat accumulation.
Guide to side effects and complications Cholesterol and triglycerides
Cholesterol and triglycerides are two empty stomach) so don't eat or drink types of fats that are carried in blood. anything before your have your blood These fats perform essential functions, taken on those days.
including making effective cell structures Management of lipid levels should be and processing vitamins A, D, E and K. part of an assessment of your risk for Cholesterol and trigylcerides are often heart disease. This is also related to referred to as ‘lipids'.
other risk factors, including lifestyle When levels are too high, this increases the risk of heart disease and stroke in the Lipids are first managed by diet general population.
and exercise, then by switching HIV However, if this is a side effect of treatment and then by using lipid treatment for a short time, there may lowering drugs.
be differences to the general population Cholesterol
where abnormal lipids are often increased and sustained for many years or decades. Total cholesterol (TC) is measured first. If these results are high then a further HIV and lipids
test will break this down into two different HIV itself (before treatment) reduces types of cholesterol: both good and bad cholesterol and i) High Density Lipoprotein (HDL) is triglycerides are higher. Starting treatment ‘good' cholesterol. It removes fats with any combination will reverse these from your arteries.
lipid effects as part of a return-to-health ii) Low Density Lipoprotein (LDL) is ‘bad' cholesterol. It is a small Because many HIV drugs and lifestyle molecule that carries fats from the factors affect lipids this is complex to liver to other parts of your body and can lead to heart disease. Testing and monitoring
Target levels for total and LDL cholesterol Cholesterol and triglycerides should be and desirable levels for HDL cholesterol checked when you are first diagnosed. and triglycerides are shown in Table 5. They should also be tested before Target levels are lower for people who starting or changing treatment and then already have high cardiovascular risk due three months after any change.
to other factors. Each 1.0 reduction in Routine monitoring for someone on stable LDL reduces CVD mortality by 20%.
treatment should then involve checking The TC:HDL ratio is used to determine lipids every 6–12 months. the importance of using lipid lowering Most clinics will do this at the same time drugs, but is not used for monitoring as your CD4 and viral load, but you may need to ask whether this is being done. If triglycerides are high, the test for HDL These tests are best done fasted (on an and LDL is more difficult to run.
Phoneline 0808 800 6013 Table 5: Target/desirable levels for fasted lipids (EACS guidelines)
Total cholesterol Less than 5.0 mmol/L (under 4.0 if high risk)
LDL cholesterol
Less than 3.0 mmol/L (under 2.0 if high risk) Higher than 0.9 mmol/L Less than 1.7 mmol/L Table 6: Factors that can affect cholesterol and triglycerides
TC is lower and TG is higher before HIV treatment Some drugs affect cholesterol (LDL and HDL) and TG Ageing can increase cholesterol and TG Increases LDL. Quitting increases HDL and reduces TG Diet affects blood lipids Exercise has a good impact on lipids Other infections Other health conditions can affect lipids.
Treatment and management
Some guidelines see triglycerides (TG) Options to improve lipids include lifestyle as an independent risk factor for heart changes (diet etc), switching HIV meds disease. Others state that the evidence and using lipid lowering drugs.
for treating moderate triglycerides is less Cholesterol and triglyceride levels can often be improved by diet changes In the D:A:D study, most of the impact (especially reducing saturated fat, of high triglycerides was explained by trans fat, cholesterol and alcohol and other risk factors, but this still remained at increasing fibre) and by starting or +10% per year.
increasing exercise. Although there is a lot of individual Weight loss, if you are overweight, will variability, target fasted levels of under have a positive impact on lipids too.
2.2 mmol/L are considered normal and Omega-3 can reduce triglyceride levels. of 2.2–4.4 mmol/L are borderline. Above Taking a supplement may be more this, the risk of heart disease increases. effective that just changing diet. Levels above 10 mmol/L are very high For example, a 4 gram (g) daily dose and need urgent treatment due to the Omacor, (90% omega-3 acid ethyl esters) increased the risk of pancreatitis. is equivalent to 150 g mackerel or 700 g Although less that 1.7 mmol/L is a target, tuna or 1.1 kg cod or 280 g salmon or 1.7 treatment would not usually be used kg eel or 850 g shrimps.
unless levels are over 2.3 mmol/L.
Guide to side effects and complications Table 7: Lifestyle interventions to improve lipids
Reduce dietary saturated fat, trans fat, cholesterol; Increase fibre. Minor impact from exercise/weight loss.
Reduce overweight, alcohol, dietary fructose and high GI carbs. Eat high fibre and low GI carbs; increase physical activity. Omega-3 supplements.
Increase HDL Replace dietary trans fat with unsaturated fat; increase activity; reduce excess weight. Only moderate alcohol.
See pages 92 –100 for more information about diet and exercise.
Lipids generally improve after switching A study of HIV positive men looking at the away from HIV drugs that cause this. effects of exercise and testosterone found If diet, supplements, exercise and that testosterone significantly reduced switching treatment (if appropriate) are levels of ‘good' cholesterol (HDL). This is not enough, then lipid-lowering drugs are a concern for people with lipodystrophy generally more effective. They are widely who already have elevated triglycerides used and have a low risk of side effects. and ‘bad' cholesterol (LDL).
Fibrates reduce triglycerides and increase Although muscle gain and fat loss were HDL cholesterol and statins reduce LDL greater in the testosterone group, levels of good cholesterol increased in people Lipid-lowering drugs need to be who used exercise without testosterone, prescribed by an HIV-specialist as they and this may be more appropriate for can interact with HIV drugs. For example people with lipodystrophy.
some statins should never be used and Although anabolic steroids can increase some require increased or decreased muscle mass they can also reduce dosing when used with PIs or NNRTIs. fat, and have the potential to worsen Studies are also looking at metformin (an lipoatrophy and lipid levels. insulin sensitising drug), rosiglitazone and growth hormone.
For further information see:EACS metabolic guidelines (2011)/www.europeanaidsclinicalsociety.orgESC/EAS Guidelines for the management of dyslipidaemias (Eur Heart Jour, 2011)http://eurheartj.oxfordjournals.org Phoneline 0808 800 6013 Increased blood-sugar levels and risk of type-2
diabetes
Associated drugs: some protease inhibitors and some nukes.
Glucose and insulin
and vision, risk of heart disease and Glucose is a type of sugar. Your body stroke, erectile dysfunction in men and relies on glucose to provide energy. A pregnancy complications in women. hormone called insulin processes the Diabetes can increase the risk of having a sugar and allows it to enter cells. heart attack as much as smoking.
Insulin also regulates production of new Fat and sugar metabolism are also glucose by the liver, levels of glucose in closely linked and insulin resistance is a the blood, and metabolic aspects of fat complication of HIV therapy that is getting more focus. It is directly related to some Insulin resistance is the term for when this protease inhibitors and possibly indirectly system fails to work properly. Although related to older nukes through their effect your body produces more insulin on fat distribution. Changes in blood to compensate, if insulin resistance glucose levels and insulin sensitivity are continues, and sugar levels remain high, closely related to other symptoms of you can develop diabetes. Insulin levels are difficult to measure, but What can help
glucose levels, usually checked by fasting As with HIV negative people, mild or non-fasting blood tests, are routinely insulin resistance can be managed by used for monitoring risk. diet, exercise and stopping smoking. Types of diabetes
Switching HIV drugs associated with increases in blood-glucose is Type-2 diabetes mellitus (T2DM) is an recommended when appropriate.
adult illness that usually develops slowly. It can take years or decades for mild Dietary advice involves reducing insulin resistance to progress to diabetes, processed sugars, refined and fast but the impact on the risk of heart disease foods, white flour and potatoes as they is serious. Some protease inhibitors all cause quick sugar ‘highs'. Complex increase glucose levels and the risk of carbohydrates (wholemeal bread, wholemeal and al-dente pasta, porridge, most vegetables) provide energy more Type-2 diabetes is different from Type-1, slowly with less impact on sugar levels.
which is caused by low insulin production, and managed by insulin injections.
Metformin may help people with insulin resistance and fat accumulation. Risk of long-term health problems
Pioglitazone may help people with insulin resistance and fat loss. Drug interactions High untreated blood-sugar is related to with HIV drugs (PIs and NNRTIs) means many long-term health problems. This that drug-level monitoring (TDM) should can include the kidneys, nerves, eyes be used to confirm dosing.
Guide to side effects and complications Tests to diagnose and monitor glucose
and insulin levels
Fasting glucose test - measures blood
Symptoms of high blood-sugar, and
sugar after an 8-hour fast. This should be measured before starting and after • Feeling thirsty or excessively hungry switching treatment, and at least annually • Feeling tired • Low concentration Fasting levels over 5.6 mmol/L in plasma • Blurred vision indicate insulin resistance, and the need • Unexplained weight loss for an oral glucose tolerance test (OGTT).
• Frequent need to urinate Random glucose test - Unfasted glucose • Slow healing of cuts
levels are less accurate but are taken • Tingling in hands or feet (neuropathy) shortly after someone has had something • Nausea and vomiting to eat or drink. If it is greater than 5.17 mmol/L other tests are run. Diabetes is over 11.1 mmol/L.
Risk factors for abnormal glucose
Oral glucose tolerance test (OGTT) -
• Liver damage or coinfection with Monitors levels of glucose every 30-60 minutes for two hours after fasting for • Family history of diabetes 8-hours and then drinking a measured • Overweight (BMI >30) glucose drink. Healthy glucose on this test should be less than 3.62 mmol/L. If it is • Lipodystrophy or lipoatrophy greater than 5.17 mmol/L other tests are run. Diabetes is over 11.1 mmol/L.
• Over 40 years old Haemoglobin A1c - tests how much
glucose adheres to red blood cells. It is • High blood pressure (over 130/85 but used to determine average glucose levels this depends on age and other risk over several months. Without diabetes factors for heart disease) a normal range is 4-6% and managed • High cholesterol and triglycerides treatment for someone with diabetes (over 1.7 mmol/L) and low HDL (good) should aim to keep this under 7%.
cholesterol (less than 0.9 mmol/L) Fasting insulin test - and results used to • History of insulin resistance or high
calculate HOMA-IR score (Homeostatic: Model Assessment-Insulin Resistance). • Other meds, including niacin, Measuring glucose is generally preferred glucocorticoids, megestrol and Growth to measuring insulin directly.
Hormone and some PIs Insulin tolerance test (also called
glycemic clamp) - where insulin is infused by intravenous line, and glucose For further information see: given until normal blood sugar levels are EACS metabolic guidelines reached. This is expensive and again is rarely used.
Phoneline 0808 800 6013 HIV, ageing and quality of life Bone mineral changes Lifestyle factors and your health Diet: a balanced diet and your health Exercise and staying active Further information Guide to side effects and complications HIV and ageing
The benefits of ageing
Complications of ageing
Ageing can bring new positive Ageing brings health issues that can also perspectives to life that are only possible be important to mention in this guide. because of our previous experiences. This is because many of the ageing This can often bring greater personal processes involve body systems that are confidence and assurance. It can include affected by HIV and sometimes by side a greater appreciation for time and for making every day count. Sometimes this can bring a freedom from many of the insecurities and uncertainties that are • Physical health: agility, strength, common when we are younger.
balance and frailty.
Life can still be dynamic and exciting as • Mental health: neurological problems we grow older. Of course there will be including memory, concentration, differences compared to when we were depression and dementia.
younger but these are not bad things. • Sensory functions: eyesight, hearing.
By looking after our health, staying • Sexual health and hormone changes.
physically and mentally active and looking • Cardiovascular health.
forward to the future optimistically, this • Lipid metabolism.
should be an enjoyable and rewarding • Liver and kidney function.
time of life.
• Bone health and lower bone density.
As ageing involves a higher risk of some • Cancers.
health problems, researchers are now looking at how HIV affects ageing.
• Social life, isolation and financial Many people living with HIV are now in their 50s and 60s and thinking Access to healthcare
about long-term issues that they never Medical care of many of these health expected. Treatment has been so problems may involve your GP and other successful at keeping most of us alive, health care professionals. that life-expectancy is now similar to that of someone who is HIV negative. In the UK, some HIV services are routinely being moved to GP care. GPs While this is true, HIV positive people may have more experience in these still have higher rates of many common areas than your HIV doctor, including: • Lipid management (although There are also increasing rates of new interactions with HIV meds often infections in older people: over 10% of requires specialist advice).
new infections are in people over 50.
• Services to help stop smoking.
• Diabetes management.
• Some cancer screening programmes.
Phoneline 0808 800 6013 Complications that are not managed by • Walking is the easiest exercise. We your HIV clinic may involve services that get time to breathe deeply, think about have less experience with HIV.
our life, see our surroundings and This is an aspect of life that will become enjoy the seasons.
increasingly important as routine HIV care • Most gyms usually include free initial becomes normalised.
training and a wide range of classes: On the other hand, it will remain just yoga, dance, swimming, boxing.
as essential for your HIV doctor to be • It is important to talk to your doctor involved in any HIV-related complications.
before starting a new exercise See pages 99–100 for more information Ageing takes planning, so you can take about exercise.
an active role in reducing your risk of many common health complications.
Diet: food, drink, cigarettes
• This includes staying physically What you eat and drink can have a big active, eating a healthy diet, not impact on your health.
smoking, moderate use of alcohol, • A balanced diet includes vegetables, and keeping mentally active.
fruit, proteins, fats and carbohydrates. • As we get older, our goals are likely Eating more fresh fruit and vegetables to change. Exercise that is less and less saturated fats and fried food physically stressful can be more is good for your health.
fulfilling, as can socialising in bars that • High dietary salt increases the risk of are less crowded and noisy. These high blood pressure, kidney damage are all important qualities of life.
and diabetes.
• New interests can become more • Alcohol in moderation may have important and have a different quality health benefits. Weekly guidelines are compared to some of things you did up to 21 units for men and up to 14 when you were younger.
for women. One unit is a small glass • Find something to make each day of wine, a half pint of beer or a single important and have goals for the spirit measure.
short, medium and long-term.
• Cigarettes damage your lungs, blood vessels, cholesterol levels and are associated with an increased risk of Daily life can easily become more numerous cancers.
sedentary and less active: spending more hours on a computer or watching TV.
See pages 92–98 for more information about diet and health.
Unless we stay active, our strength, agility and endurance will reduce. Ageing is associated with poorer physical health. Find time to keep active.
Guide to side effects and complications When lipodystrophy and metabolic • People at high risk for heart disease changes associated with combination may need to take any additional risk therapy became more widely recognised, more seriously.
there was an initial concern that these • Risk factors for heart disease in HIV symptoms could increase the risk for positive people are the same as for heart attack or stroke.
people who are HIV negative.
This is because increased levels of • Making lifestyle changes that blood lipids can lead to blocking blood minimise risk factors are now strongly vessels (atherosclerosis) and are a well- recommended as part of a long established risk factor for heart disease.
term plan for managing HIV positive This concern was prompted by a series of case reports of heart attacks in HIV There is a lot of information and research positive men who were too young to be about risk factors for heart disease in HIV considered as traditionally at high risk.
negative people. This has often come However, the risk of heart disease may from very large studies (Framingham, be increased more by untreated HIV than Caerphilly etc) that followed a large group by HIV meds.
of people for many decades. These Several large studies have reported studies led to the development of risk results that calm some of these initial calculators that are easy to access online (see page 71 for links).
• Benefits of combination therapy If you put in your age, gender, cholesterol still far outweigh the possible slight and triglyceride levels and other risk increased risk of heart disease for factors such as smoking, you get your most HIV positive people.
5-year or 10-year risk of heart disease.
• The SMART study found that using People with high risk factors for heart HIV treatment with an undetectable disease who need HIV treatment, should viral load was protective of heart use HIV drugs that are least likely to disease compared to not being on increase the risk of cardiovascular treatment or having a detectable viral disease any further. Support for lifestyle changes should also be provided. • The D:A:D study reported a small additional increase in risk of heart disease from each year on some HIV meds including lopinavir/r (Kaletra), abacavir and ddI.

Phoneline 0808 800 6013 Risk factors for heart disease
Additional symptoms for a stroke
The following factors increase the risk of include:
heart disease; some of which are fixed • Sudden numbness and some are modifiable by lifestyle.
• Paralysis of the face or limbs, Fixed risk factors
especially affecting just one side of • Older age (men over 45, women over • Difficulty speaking • Gender (men are at higher risk at the • Loss of balance or coordination • Severe headache • Family history of heart disease • Brief loss of consciousness.
Modifiable risk factors
If you experience these symptoms,
you should seek urgent medical
• High lipids - ie high cholesterol and/or triglyceride levels Rapid treatment after a stroke (within 2-3 • Lack of exercise hours) can limit permanent brain damage.
• High blood pressure, especially D:A:D Study
diastolic blood pressure The D:A:D study is the largest study to • High levels of sugar in blood, insulin look at the risk of heart disease in relation resistance and diabetes to HIV treatment. Symptoms of heart attack or
It has been running for over ten years and has collected results from almost 50,000 patients from Europe, the US and Israel.
Symptoms of cardiovascular disease
This diversity is one of the study's include:
strengths. D:A:D found that some HIV • Shortness of breath drugs are related to a small but significant increased risk of heart disease. This was found in different countries and in both • Feeling dizzy or light-headed men and women.
These drugs include recent use of • Chest pains (that can extend to the abacavir, ddI and cumulative use (from shoulders, back, arms, head and jaw) each year) of abacavir, indinavir and • Chest pains after exercise or exertion.
Guide to side effects and complications Relative rate and actual risk
The most recent research suggests The D:A:D study showed that the relative trying a range of products over the rate for an increased risk of heart disease first week or two to cope with nicotine form using a drug depends on your other withdrawal such as patches, gum, risks factors.
inhalers and sprays so that you find the ones that work best for you.
If you have a low cardiovascular risk, then a relative increase, even by 50% Your HIV doctor can refer you to still remains a low real (absolute) risk. specialist services to help you quit.
However, for someone with a high • Diet changes can significantly reduce cardiovascular risk relating to other your risk for heart disease.
factors (age, smoking etc) then an • Reducing fatty foods can reduce lipids increase in the relative risk from an HIV to some extent. Cutting down on salt drug would be much more significant.
reduces blood pressure. Eating less For someone who has a high risk processed sugars reduces your risk because of factors that can't be changed of developing insulin resistance and (ie a family history of heart disease) then it is more important not to add to these • Eat more fruit and vegetables, fish risks by using any HIV drug with this and lean meat and reduce use of potential side effect.
processed foods.
How to make lifestyle changes
• Exercise is the other main factor that Changing the risk factors for heart you can change. Regular exercise disease can have a direct impact on and being more active in your day-to- future risk. By implication, this will also day life, by walking more and using make HIV drugs safer to use.
the lift less, is more important than very vigorous exercise.
The advice given to the general population is even more important if you Any change in level of activity will are using HIV treatment.
probably have to start gradually. People who start an exercise • Stopping smoking is the most programme report benefits in quality important lifestyle change in terms of life. This can include increased of general health and risk of heart well-being and energy levels.
disease. Support groups and other interventions including replacement The website for the North Central London therapy like nicotine patches are now Cardiac Network includes detailed available on the NHS.
guidelines for managing heart disease:http://www.nclcn.org.uk/ Phoneline 0808 800 6013 Glossary (heart disease)
Arteries are the blood vessels that take
blood away from the heart.
Veins are blood vessels that delivery
blood back to the heart.
Arrhythmia is the medical terms for a
disturbance of the heart's natural rhythm. It is called Tachycardia when the heart
beats too fast and Bradycardia when it
beats too slowly.
Atherosclerosis refers to a narrowing
or hardening of large and medium sized arteries. The narrowing is caused by a The first number is systolic BP - the build-up of plaque, and usually takes pressure when your heart beats. The many years. As the walls of the artery second number is diastolic BP, which thicken, the heart has to work harder to is the pressure when your heart rests pump the same amount of blood through a narrower gap.
Target range for BP is usually quoted as Cardiovascular refers to the heart and
120/80, with interventions sometimes recommended if this is above 130/85 or 140/90, but these are dependent on risk Cardiovascular disease (CVD) is the
factors for heart disease including your general term for disease to the heart and related blood vessels.
Hypertension increases the risk of a heart Cerebrovascular refers to the blood
attack, particularly when diastolic BP is vessels taking blood to the brain. A blockage that restricts blood to the brain is called a stroke. Strokes can occur Hypotension is the medical name for
when blood vessels in the brain block, or low blood pressure.
when a clot formed in another part of the Pulmonary hypertension refers to high
body is carried to the brain.
blood pressure in the arteries taking Coronary Heart Disease (CHD) refers to
blood from the heart to the lungs. HIV the three main arteries that supply blood positive people are more likely to develop from the heart. A coronary by-pass is an pulmonary hypertension than HIV operation to provide a new route for blood negative people.
to reach the heart when coronary arteries Myocardial Infarction (MI) is the medical
become blocked.
term for ‘heart attack' Hypertension is the medical name for
Peripheral arterial disease refers to
high blood pressure (BP). Blood pressure
atherosclerosis in the arteries in the arms is measured as two numbers ie 120/80. Guide to side effects and complications Bone health
(osteo = bone; necrosis = death; porosis= thin)
HIV is one of several conditions that are Risk factors for low bone mineral density linked to bone changes. Even if this is not a side effect of HIV • Age (bone reduces in later life). meds this is a new area of research that • Low body weight and low Body Mass is important for your long-term health.
Index (BMI) as heavier people have There are two main types of bone stronger bones.
• Lipodystrophy and metabolic changes • Changes in content and structure (the way your body processes sugar of bone. This is where your bone and fat are linked to bone changes). becomes thinner and more brittle. • Use of corticosteroids (prednisone).
This is called osteopenia at mild levels • Alcohol use (more than 3 units/day).
(when there are no symptoms) and • Caucasian/Asian race.
osteoporosis at more severe levels (that require treatment).
• Smoking cigarettes.
• Low calcium or vitamin D levels.
• Interruption of blood supply to the bone. This causes death of bone • Lack of physical activity.
tissue - called osteonecrosis and • Family history of osteoporosis.
avascular necrosis (AVN).
• Low testosterone levels in men and Osteopenia and osteoporosis
early menopause in women.
Rates of both osteopenia and Osteoporosis is more serious than osteoporosis are significantly higher in osteopenia because it is linked to an HIV positive people compared to HIV increased risk of fractures and pain negative of the same age and sex.
(commonly to the spine in men and the It is still unclear if this is due to HIV or side effects or both.
Diagnosis: DEXA results
Although tenofovir can cause a small A DEXA scan is usually used to diagnose drop in bone mineral density in the first low bone mineral density. six months of use, this does not appear to Results are usually given as a T-score progress with longer use.
which compares your results to a The SMART study reported slightly lower reference group (age 30) matched for bone density in people who were on any your sex and race.
treatment, irrespective of which drugs Bone density reduces with age and a higher than –1.0 DEXA scan for all post-menopausal women and for men older than 50 is recommended in some HIV guidelines.
Phoneline 0808 800 6013 If you have osteoporosis you will need advice on how to exercise safely. Osteonecrosis and AVN
diet adequate in calcium, protein and Osteonecrosis and AVN are much less vitamin D (and spending some time in common, and usually affects the hip, the sunshine) protect you against bone shoulder or knee joints, and requires mineral loss.
replacement surgery. Bone-building nutrients include calcium It is very common for corticosteroid use to and vitamin D (cholecalciferol) and be a contributing factor in cases of AVN.
any deficiency should be corrected by increasing dietary intake or use of Early diagnosis of AVN makes a big difference to the success of treatment as well as your quality of life. If you Guidelines recommend adult targets have pain in these joints, ask to see a using 1200 mg daily for calcium and 800 specialist. An MRI scan is used to make -1000 IU/day for vitamin D (for people an appropriate diagnosis. at higher risk). If you have very low levels (<15 nmol/L) then using higher Protecting bones: treatment and
doses (50,000 IU weekly) for the first few months is recommended.
Your bones are a living structure, 10% These nutrients can be prescribed by of which naturally die each year to be your doctor and sometimes require replaced by new cells. If the bone isn't special monitoring and dosing. replaced quickly enough or in sufficient The target for vitamin D is for blood levels quantities, your bones become thinner of 25(OH)D to be higher than 75 nmol/L. and more brittle. Although HIV meds may have a small Leading an active life, and including negative impact on bone strength, exercise, maintains healthy bone. the other benefits of treatment usually This includes weight-bearing exercise outwieght this small risk.
(walking, jogging, running, steps and dancing) and muscle strengthening First-line medications to improve bone exercise. Improvements include better mineral density are a family of drugs posture, balance and strength and a called bisphosphonates. These include direct improvement in bone density.
alendronate (Fosamax) and zoledronate (Zometa). These may only be needed for If you have osteoporosis some
a few years until a treatment response is common exercises, including
twisting and stretching may not be
recommmended. Take expert advice.
Treatment and prevention measures are National Osteoporosis Foundation (US) similar to HIV negative people - although closer monitoring of HIV positive people National Osteoporsis Society (UK) is clearly important. Stopping smoking and reducing Bone Research Society alcohol, taking exercise and eating a Guide to side effects and complications HIV and cancer
There are several reasons to include To makes things complicated, some non- information about cancer in this guide.
AIDS defining cancers occur at higher • Some people are only diagnosed with rates in people living with HIV and this HIV when their CD4 count is already may be unrelated to CD4 cell count or very low or following a diagnosis of HAART use. Many of the NADM that cancer. Very late diagnosis often occur more frequently in people living with includes an HIV-related cancer as part HIV are linked to a virus. These include of the HIV diagnosis.
anal cancer in men and women (linked to HPV), Hodgkin's lymphoma (linked to • The risk of most cancers increases EBV) and liver cancer (linked to hepatitis with age. The longer we live–and B and C). A few cancers also occur more luckily life expectancy has never been commonly in HIV positive people but are better–the greater the chance we not linked to known viruses (lung cancer will have to cope with cancer-related and melanoma).
Many cancers both NADM and ADM • Although rates of the three AIDS such as lymphomas have high chances defining cancers (KS, NHL & cervical of being cured and it is very important to cancer) have fallen with access to HIV seek treatment as soon as possible.
treatment, some non-AIDS defining malignancies (NADM) still occur at a Other cancers don't seem to be linked to higher rate in HIV positive compared either HIV or use of ARV treatment and to negative people.
are not more common in people living with HIV than in the general population. • HIV positive people with side effects These tend to be cancers that are not from cancer treatment may find some linked to another virus, including breast, of the information in this guide useful.
colon and prostate cancers. These HIV, treatment and cancer
cancers are increasing in HIV positive people using HIV treatment, because Cancers that occur in HIV positive people they are living longer for these age- were originally categorised as either AIDS related complications to occur. defining on non-AIDS defining.
For all cancers, early diagnosis and Combination HIV therapy has been treatment is one of the most important able to reduce the risk of AIDS defining factors for recovery.
cancers but seems to have little effect on the risk of some non-AIDS defining This is a highly specialised aspect of cancers but not others. The risk of AIDS medical care. If you are diagnosed with defining cancers increases at lower any cancer, whether formally HIV-related CD4 counts. This is one of the reasons or not, you need to be treated by an behind the recommendation to start ARV expert in HIV-related cancer.
treatment earlier. Phoneline 0808 800 6013 Table 8: Incidence of cancers affecting HIV positive people and impact of ARVs
defining HIV neg.
KS generally only CNS lymphoma seen in people Non-Hodgkin's Yes Before ARVs are significantly diagnosed late. ARVs are first-line KS cervical cancer screening should start at a younger age and Cervical cancer Yes some studies.
be more frequent in HIV positive women.
the incidence.
Non-AIDS Anal cancers Screening for anal cancer in men and women is not currently risk in HIV Hodgkins routine, although some experts.
Stopping smoking reduces lung cancer.
higher (lung, increasing due All hepatitis coinfected to living longer.
people should be screened for liver cancer (6 monthly US and AFP).
Avoid sunburn.
recommended as part ARV treatment. of general population to living longer.
This table only refers to cancers in general terms. HIV-related cancers that occur at very low rates are not included. KEY: KS: Kaposi's Sarcinoma; HD: Hogdkins Disease; NHL: Non-Hodgkins Lymphoma; EBV: Epstein Barr Virus; HHV-8: Human Herpes Virus-8; HPV: Human Papilloma Virus; CNS: Central Nervous System. Guide to side effects and complications Lifestyle factors and your health
The following few pages focus on lifestyle important for HIV positive people.
changes that can affect your health.
The risk for all the health complications This is because these have been in Table 9 can be reduced by the linked highlighted in many research studies in lifestyle change.
the general population, see Table 9.
Pages 93–100 include more detailed As we get older, these risks and the information about diet and exercise.
potential to change them are just as Table 9: Lifestyle factors linked to serious health problems
Health conditions Cigarette smoking Heart disease, stroke, diabetes, numerous cancers (lung, oesophagus, mouth, pharynx, stomach, liver, pancreas, cervix, bladder, kidney, colorectal), leukaemia, chronic obstructive pulmonary disease (COPD), other respiratory diseases, TB.
High blood glucose Heart disease, stroke, diabetes, renal failure, some cancers (colorectal, breast, pancreatic).
High LDL cholesterol Cardiovascular disease (heart and stroke) High blood pressure Heart disease, stroke, hypertension, renal disease.
Obesity (high BMI) Heart disease and stroke, diabetes, some cancers (colon, kidney, High trans fats in diet High saturated fat diet Heart diseaseLow omega-3 in diet High dietary salt Heart disease, stroke, hypertension, stomach cancer, renal failure.
Low dietary fruit and Heart disease and stroke, some cancers (colorectal, stomach, lung, oesophagus, mouth and throat).
Alcohol use (above Heart disease and stroke, hypertension, diabetes, some cancers (liver, recommended levels) mouth, throat, breast, oesophagus, colorectal), cirrhosis, pancreatitis, road injuries, suicide, homicide and other injuries, alcohol use Low physical activity Heart disease and stroke, breast and colon cancers, diabetes.
Phoneline 0808 800 6013 Diet: a balanced diet and your health
A healthy diet helps your physical and Diet and weight
mental health.
In general, if we eat fewer calories than It can reduce the risk and severity of our body needs for energy, we will lose conditions such as obesity, heart disease, weight and if we eat more than we need diabetes, hypertension, depression and we put on weight. But this is not the whole story. We all Why a balanced diet?
have an individual balance depending on Sometimes we eat because we enjoy the how our body signals to itself to process taste and experience of different foods, food. Some people burn more energy and and sharing food and meals are important in different ways, and this explains some of the diversity in how we all look. But other than for pleasure, our bodies This can also change over time through need food to get nutrients, vitamins, life depending on whether we are still minerals and energy. growing and when we get older. Very few foods are either all good or all Some foods are processed by our bodies bad - so by having an idea of the balance in ways that are more healthy. This tends in your diet, it should be easier to enjoy to be foods that release sugars more food and be healthy.
slowly and that contain fibre.
There are seven essential nutrients that Other foods including saturated fats come from a balanced diet, and a rough and foods that are high in salt or simple percentage of daily calories should come sugars can have a negative impact from each nutrient, see Table 10. on health because of how the body Eating a wide range of different foods will give you body the nutrients and Calories and lifestyle
micronutrients that it needs.
The average number of calories you A healthy diet should include a varied need each day can vary and is influenced selection of foods. But some types of food by many factors including sex, age, are better for us ("5-a-day" for fruit and metabolism, physical activity, growth and vegetables) than others (cakes, biscuits etc), see Table 11.
Body height, weight and size, genetics, hormone levels and any illness can affect how much energy we need. Daily guidelines recommend around 2500 calories for men and 2000 calories for Guide to side effects and complications Differences within nutrients
Low GI foods release sugar slowly. This There are healthy and less healthy gives a prolonged supply of energy to the dietary sources of nutrients, especially body. Higher GI foods give shorter bursts for carbohydrates (carbs) and fats. These are explained below and in Table 12.
The GI of a carbohydrate is affected by numerous factors including whether the Carbs: simple vs complex
carb is simple or complex but also how It is recommended that carbohydrates the food is cooked and also what it is ("carbs") form the basis of most diets. You should aim for half of total energy Fruit and vegetables are carbohydrate (calorie) intake to come from carbs. This foods. They include a wide range of food group can be separated into simple vitamins and minerals as well as soluble and complex carbs fibre. You should aim for five portions of Complex carbs such as wholewheat fruit and vegetables a day. flour and pasta, and brown rice, contain Fruit juice is counted as one of your larger chains of sugar molecules. These 5-a-day, but if you are watching your take longer to digest than procesed weight it is better to eat whole fruit which grains. This makes you feel full for longer, takes longer to digest and keeps you helping to control your appetite. felling full for longer.
Complex carbs provide energy and are Fat: saturated and unsaturated
key sources of nutrients such as fibre, B vitamins and minerals.
Dietary fat is important for making healthy The more refined complex carbs e.g. cells. It produces hormones and other white flour, pasta and rice are digested signalling molecules and is a source of more quickly by the body. This makes energy and energy storage. them a faster source of energy. However, Two categories of dietary fat are these types of carbs do not offer as many saturated and unsaturated. They have additional nutrients. This is why whole- the same amount of calories but different wheat and brown carbs helps improve the effects on your health. We need to aim overall quality of your diet. for a good balance between the different Simple carbs are the sugars. These can dietary fats to optimise our health and be natural (e.g. fructose found in fruit) or reduce health risks. refined (e.g. sucrose or glucose in soft Saturated fats are generally solid at room drinks, sweets and biscuits). temperature and these are the fats that Another key carb-related term is the will have a negative impact on our health. Glycaemic Index (GI). This relates to how They are the naturally occurring ‘bad fats' quickly the sugar in either complex or and are found from butter, hard cheeses, simple carbohydrates is released into the fatty meat/ meat products, cream, lard, suet and some plant oils including coconut oil and palm oil. Phoneline 0808 800 6013 Table 10: Essential nutrients for a healthy balanced diet
% of daily Function Grains (refined & unrefined): wheat, maize, corn, millet, oats, rice, flour, pasta, noodles; potatoes; sweet potatoes, yam. Fruit (sugar).
Tissue growth and Meat, fish, nuts, eggs, soya, beans and Energy, energy storage, Nuts, seeds, plant oils, dairy products hormone production (milk, cheese).
Regulates blood sugar Peas, beans, vegetables, fruit, oats, levels, bowel function whole grains, brown rice, nuts, seeds.
and bowel health.
Metabolism regulation, Specific to each vitamin/mineral. A range aiding cell growth, other of vegetables, lean meat, nuts and seeds biochemical functions will cover most peoples needs.
Maintaining hydration Drinking water, other beverages. About 20% of water intake comes from food.
Table 11: Eat more, eat less.
Raw and cooked vegetables & fruit ("5-a-day"), nuts, seeds, beans & pulses, whole grain cereals/bread, lean aspects of better health white meat (chicken without skin), fish (especially oily) including reducing LDL.
Lean cuts of beef, lamb, pork, shellfish, dairy products These foods can all moderation (low fat), unsaturated fats (olive oil, vegetable oil). Dried be an important part of fruit, jams. Sucrose, honey, fructose, chocolate.
Saturated fat (butter, margarine, lard, cheese, cream, These foods are not high fat milk), trans fat, salt (less than 5g daily). good for your health.
Processed meats/fatty cuts of meat (sausages, salami, Some guidelines bacon, ribs etc). include specific Processed meals (high in fat, sugar and salt).
Pastries, muffins, pies, cakes, sweets, etc.
Alcohol is high is sugar and calories and is only recommended in moderation.
Guide to side effects and complications Unsaturated fats include the Diet and cholesterol
polyunsaturated, monounsaturated and Omega 3 fats and will have a positive Cholesterol is a compound similar to impact on our health. Monounsaturated fat. It is needed by the body to form the and polyunsaturated fats are found in oils outside barrier of cells (membrane). It can such as olive, rapeseed and sunflower. be both made by the body and consumed through sources in the diet. Absorption Omega-3 and omega-6 are known as of dietary cholesterol is complicated and essential fatty acids (EFA's) because the other factors such as genetics can affect body can only get these from diet. They the overall level of cholesterol circulating are found in oily fish such as sardines, in the blood.
salmon and mackerel. High levels of cholesterol in the blood are Trans-fats are a form of unsaturated fat associated with damaging arteries and that rarely exists in natural food but are heart disease.
associated with partially hydrogenated vegetable oils. They are often added Specifically, having high levels of low- to processed foods such as cakes and density lipoprotein cholesterol (LDL) and biscuits and so these should be eaten low levels of high-density lipoprotein less often and in small amounts. cholesterol (HDL) in the blood increase the risk of heart disease. Trans fats as cooking oils have been banned in some regions because of their Changes in diet can make a difference impact on cardiovascular health. though. Choosing foods with more unsaturated fats compared to saturated fats can increase levels of HDL and lower levels of LDL in the blood.
Diet and triglycerides
Similar to cholesterol, triglycerides are
fat molecules that aid in metabolism and moving other fats around the body. Like cholesterol, high levels of triglycerides in the blood have been linked to heart disease.
Phoneline 0808 800 6013 Table 12: Types of fat and their impact on your health
Generally solid at room Less healthy. Linked to high LDL and temperature. Animal fat from increase heart disease. Diets high in meat and dairy fat (butter, saturated fat are linked to raising levels cheese, cream). Some plant of LDL; this can be a risk factor for heart oils including coconut oil and disease. Saturated fat should not be excluded from the diet however, just consumed in smaller amounts (7-10% of fat intake). A range of fats is needed for healthy functioning of the body.
Vegetable oils like olive, Improves insulin sensitivity, LDL and TG sunflower, and rapeseed/canola compared to saturated fats.
oil. Nuts, avocados.
Replacing saturated fats by unsatruated fats Omega-3 (from oily fish or and carbs reduces the risk of heart disease.
supplements) and omega-6. Trans fats are included in Trans fats increase bad cholesterol, reduce processed foods.
good cholesterol and are bad for your health, As a processed cooking oil, it especially "partially hydrogenated trans fats".
was widely used by fast food They are banned in some countries and US outlets for frying.
states for use as cooking oils.
Dietary fibre: soluble and insoluble
Dietary fibre typically contains a proportion of the carbohydrate cellulose, There are two types of dietary fibre. which cannot be digested by humans as This can be classed as either soluble we lack the enzyme to break it down. (which changes how other nutrients are absorbed in the digestive system) or Vitamins and minerals
insoluble, (which is not metabolised and Vitamins are chemical compounds and which itself absorbs water). minerals are chemical elements that the A mixture of both soluble and insoluble body needs in small quantities. They are fibre is needed for good health. used by the body for a wide range of functions and very low levels (deficiency) Soluble fibre regulates blood sugar levels are related to some health complications.
and balances intestinal pH levels.
Unless you have a low level of a Insoluble fibre helps with digestion and particular mineral or vitamin, there is elimination by speeding up the passage unlikely to be a benefit from taking a of food in the digestive system. Guide to side effects and complications Ways of cooking?
Protein is essential in maintaining the The way that we cook and prepare food function of all cells in the body and is also is important. Certain cooking methods are a source of energy. also better at retaining the nutrients within It is made up by complex combinations of 22 amino acids. Ten of these amino acids Cooking techniques such as roasting can only be obtained by diet.
and frying can be less healthy if a large Although protein is an essential part amount of fat (oil or butter) is added of your diet, this is also only needed in during the cooking. However, you can fry and roast using What about salt?
small amounts of healthier fats such as olive and rapeseed oil. High intake salt and high salt containing Grilling and steaming are widely foods increases the risk of high blood considered to be healthier cooking pressure and therefore increased risk of techniques in most cases.
coronary heart disease. Most salt in the UK diet comes from processed foods such as pastries, convenience and savoury type snack The online references for this booklet foods. Tinned foods can also be high in includes links for further information.
salt so if in doubt check the nutritional labelling.
Recommended intake of salt varies depending on your age, health and other factors. UK guidelines recommend no more than 6 grams a day for adults, which is the equivalent to 2.4 g of sodium.
To convert sodium to salt multiply by 2.5. US guidelines are 5 g/day while recognising that actual average intake is often twice this high. Phoneline 0808 800 6013 Exercise and staying active
Many sections of this booklet refer to exercise as a way to improve your health. WHO adult guidelines (age
Table 13 describes different types of exercise and provides some examples and 1. Aim for at least 150 minutes of Table 14 highlights some of the related moderate-intensity aerobic activity health benefits. or at least 75 minutes of vigorous- intensity aerobic activity each For more information talk to your doctor week – or a combination. about the type of exercise that could benefit you most. Often this might just 2. Increasing this time (ie to 300 and 150 minutes respectively) will lead being way to make your life more active. to better health benefits.
WHO guidelines recommend at least 1–5 3. Aerobic activity should last for at hours exercise each week depending on least 10 minutes duration. the type of exercise (see box). 4. Muscle-strengthening activity If you have not exercised for a while you should involve major muscle will need to build up your strength and groups on at least two days a Exercise is individual to your goals. Some The recommendations for children and those over 65 are slightly different but people want to build up muscle, some still promote the importance and many want to loose weight and others just want benefits of physical activity. to get fit. Each goal uses different types of Table 13: Main types of exercise and related benefits
Walking, jogging, Any exercise that makes your heart beat faster and your running, cycling, breathing rate increase is aerobic exercise. Over time, with aerobic exercise, your heart muscles will grow stronger. This also increases blood circulation so which helps clear your dancing, skipping, blood vessels. As you work harder and for longer periods this exercise starts to use the energy stored in body fat.
Resistance Press-ups, Any exercise where you use increased weights (and/or increased repetitions) to make mucsles work harder is called resistance exercise. This type of exercise will build up and maintain muscle mass. Walking, running, Exercise that puts weight on your bones, helps your bones jogging etc. Some grow and stay strong. This includes some aerobic exercie like weight lifting.
running and some resistance exercise like weight lifting. Stretching, yoga, Exercises that improve the range of motion of muscles and Guide to side effects and complications Nutrition and exercise
Look out for classes that offer a range A balanced diet will give the body all of of activities and sports. Getting into a the nutrients that it needs to repair itself routine will help - after a few weeks or after exercise. See page 93–98 on eating months this will feel normal.
a healthy diet.
Exercise with friends can be more fun, and help keep you motivated. Or see this Tips to stay active
as time to focus on yourself. Your own goals are personal to you. This Being more active throughout the day is not competitive to anyone else.
makes a difference. Taking the stairs Your pesonal plan will be based on your instead of a lift or walking to work for goals. Some people want to build muscle and others to lose weight. Get advice for Start slow and gradually build up your the best exercise for your goal.
level of activity, particularly if this is a If you find an exercise that you enjoy new change. It is important to stretch and you will be more likely to do it regularly. warm up before and after most exercise.
Table 14: impact of exercise on different health conditions
Physical activity reduces A more active lifestyle reduces risks of metabolic indicators for developing type-2 diabetes.
Heart disease Physical activity improves Improving aerobic fitness reduces risk of heart aerobic fitness.
disease. Aim for 150 mins or more of moderate- intensity activity per week.
Physical activity reduces Highly-active individuals had a 27% reduced risk Physical activity is Improved lipids are associated with reduced risk associated with lowering of cardiovascular disease. Few studies have levels in the blood.
looked at exercise and LDL/triglycerides directly.
Exercise can be used as a Reduces risk of developing depression and can treatment or preventative.
boost self-esteem.
Moderate-vigorous physical Lowers risk of developing some cancers.
activity for 30-60 mins daily.
Regular physical activity for Lowers rates of all-cause mortality, 30% reduced risk of falls, and better cognitive function.
Resistance exercise Moderate-vigorous physical activity performed increases bone density (and for 3-5 days a week. 30-60 mins per session increases bone mass density.
Phoneline 0808 800 6013 As we age, similar to HIV negative The online drug interaction resource people, we are more likely to have other produced by Liverpool University lets you health complications. These often need select the drugs in your HIV combination and then check for interactions with Many of the drugs used to treat HIV also other medications. You can then print an have the potential to interact with other individual summary chart.
commonly used drugs, including lipid This resource includes a wide range of lowering drugs (like statins and fibrates) potential interactions between HIV drugs and antacid drugs (like omeprazole).
and other medications including: This is an area where the pharmacist who gives you your HIV drugs will have most • Antacids and gastrointestinal drugs It also increases any complication if side effects occur from non HIV meds.
• Blood pressure drugs Both your GP and your HIV doctor should know about all medications and • Diabetes drugs supplements you use. • Erectile dysfunction drugs If you do not want to tell the local pharmacy or your GP about your HIV • Heart disease drugs medications, check for interactions with • Hepatitis C drugs your HIV pharmacist, HIV doctor or nurse.
• Herbs, supplements and vitamins Your HIV pharmacist will be able to check • Hormone treatment and steroids whether drugs prescribed by your GP interact with your HIV meds.
• Immune modulating drugs Write a list of all your meds including the • Lipid lowering drugs doses to make this easier.
• Oral contraceptives
• Painkillers
• Recreational drugs
• Smoking cessation drugs
• Weight reduction drugs (eg Orlistat)
Further information
Liverpool University HIV drug interaction

Guide to side effects and complications The information in this guide is based on treatment guidelines and over 380 published studies. The references for these studies are on the i-Base website.
Whenever possible, we used publications that are recent but that are also accessible free as open access online. Many publications provide free access to full text articles after 1–2 years of the publication date. Where this was not possible, we include a web link to the study summary. Each of these papers, expecially treatment guidelines, include their own extensive references for more detailed research. These are a good pointer for Credits
i-Base would like to thank the wide group
This guide was written and compiled by of HIV positive people, activists and Simon Collins for HIV i-Base. medical professionals who have reviewed Thanks to Rebecca McDowall for proof the guide, especially Dr David Asboe, comments and to Muirgen Stack for help Professor Mark Bower, Dr Angelica with the sections on diet and exercise. Kavouni, Dr Mark Nelson, Dr Chlöe Orkin, Thanks to The Monument Trust for their Karen Percy and Dr Mike Youle.
continued funding support and to No We would also like to thank the people Days Off for the cover design and layout who contributed the quotations used throughout the guide. Details of the review group are available online. Not-for-profit copying and translations are encouraged or contact i-Base for additional free copies. Phoneline 0808 800 6013 The BMA guide is a general reference book (not just HIV-related) including illustrated information on how drugs work The Canadian community organisation and on many individual drugs: CATIE has a comprehensive guide to side effects that may cover other areas ‘BMA New Guide to Medicines and Drugs'. Produced by the British Medical Association, 2007 7th edition. Published by Dorling Kindersley for £16.99. AEGiS.org includes an excellent and Much of the most easily readable and comprehensive online database of up-to-date information on side effects and conference abstracts. HIV is available on the internet.
The following links were correct when we Many conferences publish studies on went to press. If you have trouble finding the internet and some also let you hear an article or link call the i-Base phoneline lectures and see slides from some on 0800 800 6013 and we'll try to help.
sessions. Important sites for 2011 If you are not reading this in electronic meetings include: format the i-Base website contains all Conference on Retroviruses and these references as active links - to save you retyping addresses: International AIDS Society Conferences: Treatment guidelines have good Reports from these and other meetings information on managing side effects: are usually available shortly after the meetings on the following sites: http://www.aidsmap.comhttp://www.natap.orghttp://www.thebody.comA community site with a range of information on fat loss. As well as facial fat loss this is one of the few sites that includes an overview of fat loss from the Guide to side effects and complications Online calculators
Updated non-technical fact sheets on For risk of heart disease and kidney
many side effects are available in English and Spanish on AIDS Infonet: Different calculators use different data sets to calculate cardiovascular and and Aidsmap reports on many aspects of HIV kidney function (estimated GFR). None and treatment.
claim to be 100% accurate or validated http://www.qrisk.org/ BETA, the quarterly newsletter from San Francisco AIDS Foundation includes articles on side effects.
A calculator that includes race may help Physicians Research Notebook (PRN)
Detailed and more technical articles on The D:A:D study developed a 5-year many current aspects of treating and calculator for use in HIV positive people) mangaging HIV, including side effects.
calculators is at: Websites on drug interactions
For BMI, smoking etc:
A range of NHS calculators include BMI (for weight) and financial savings (from Phoneline 0808 800 6013 Your feedback on this guide helps us develop new resources and improve this resource. All comments are really appreciated. Comments can be posted free to: FREEPOST RSJY-BALK-HGYT, i-Base, 57 Great Suffolk Street, London SE1 0BB.
Or made directly online at: www.surveymonkey.com/s/7CCWBW2 1. How easy was the information in this guide to understand? Too easy 2. How much of the information did you already know? None 3. Did the information help you feel more confidence when speaking to your doctor? Yes, a lot Yes, a little 4. Which information did you find most useful? 5. Do you still have questions after reading this guide? Please give examples.
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