Weight loss can be a very serious issue for people with HIV. Unintentionally losing just 3% of your body weight can significantly increase your chances of becoming ill because of HIV.

When you become ill you often lose your appetite. However your energy requirements are likely to be greater when you are sick. Losing weight can be dangerous as it reduces the body’s ability to fight infection and recover. Changes in your appearance because of weight loss can also be difficult to cope with.

If you are ill, or are recovering from illness, what you eat is likely to be very important to how you fight illness and the speed at which you recover. If you are concerned about your nutritional requirements at this time, then speak to a dietitian as soon as possible as it is very easy to start missing out on essential nutrients.

Above all, don’t think that eating problems or weight loss are trivial. They are not and it is always better to see someone early to prevent problems later.

Weight loss is common in HIV infection and should always be taken seriously. If you cannot face eating or if you are finding it difficult to keep food down, a dietitian will not bully you into eating your food. Rather they will try and help you regain your appetite or recommend smaller, more nutritious meals.

Causes of weight loss

There are many things that can cause weight loss, the most common being loss of appetite. Other causes can include:

• Eating problems due to a sore mouth or throat.
• Diarrhoea.
• Infections which make the body burn up more energy and nutrients.
• Difficulties buying or preparing food.
• Treatment side-effects.
• Psychological problems.
• Not having enough money to buy proper food.
• Taking too much exercise without increasing calorie intake to compensate.
• Missing meals because of being drunk or high on drugs.

An important first step is to identify any medical cause of the problem. Loss of weight can be an important warning sign of the presence of an infection which often manifests itself before other more specific symptoms become apparent. It is unusual for a person with HIV to lose weight if there is not an underlying HIV-related medical problem, although lack of appetite, worry and depression can be a cause.

It is important to try and minimise weight loss during illness and to put weight back on as lean muscle mass if you lose it during an illness. If you are too ill to shop or cook for yourself during an illness, then ask your family, friends or carer to help. Your

local council social services should also be able to offer advice and help about shopping and cooking or even by providing precooked meals.

Tips on eating when you are ill

Always have food available in your home. Canned foods, long-life products and frozen, ready-made meals are ideal when you are feeling unwell. If you are unable to afford food then seek help and advice from your local council, HIV treatment centre or an HIV support agency.

Snacking through the day may be easier than eating three main meals; it will also be less tiring to prepare and eat food in this way.

Easy to swallow full-fat drinks and yogurt may provide a useful source of energy and calories.

Your clinic will be able to provide food supplements that contain a balance of the nutrients you need, which may help you boost your energy intake if you don’t feel like eating large meals.

Eating problems

If you have eating problems for any reason, there are things you can do to make eating easier.

Lack of saliva

Chewing gum before eating may help. Liquid, or semi-liquid food is easier to swallow. Avoid dry foods or foods which are likely to stick to the mouth. Acidic foods, like citrus fruits (oranges, tangerines, grapefruit, lemons and limes) and some spicy foods, may stimulate the production of saliva, but could cause irritation to mouth ulcers.

Sore or inflammation in the mouth

Avoid spicy, acidic, salty, very hot, or hard food, such as crusty bread. Try and chew your food away from the sore or inflammation. Liquid or semi-liquid food may be easier to consume.

Difficulty chewing

Liquidised food may to easier to eat. Mashed potatoes and well-cooked rice may also prove easy to eat and can be mixed with cheese, milk or vegetables to improve flavour and increase nutritional intake. If you are having difficulty swallowing because of throat problems, then liquid or semi-liquid

Altered taste

This can be caused by bleeding gums and some mouth infections or as a side-effect of drugs used to treat HIV and other infections. Try adding ingredients to alter the taste to meet your preference.

Losing muscle

When people are ill and lose weight, it is usual for them to lose more muscle than fat. Not only does that make day-to-day living harder, but also it reduces strength and the ability to fight off further infections. If you have lost weight because of illness, then any programme designed to promote weight gain should include muscle building as well as fat gain. Exercise is crucial to maintaining weight and strength, particularly in these circumstances.

Building muscle and improving appetite

The easiest way to build up muscle is aerobic exercise, sometimes called resistance, or weight training.

Resistance training using weights will help to:

• Increase muscle size and reverse wasting.
• Increase strength.
• Increase weight but not body fat.
• Lose fat from the buttocks, abdomen and stomach.
• Improve your mood.

To make sure that you are exercising safely and effectively, you should ask a fitness instructor to develop a training programme for you which includes warm-up exercises followed by exercises for all the major muscle groups, normally divided into three sets of eight to twelve repetitions.

You should try and over load the muscle (i.e. until you cannot lift any more). However, don’t over do it as this can lead to injury and illness, or at very least put you off continuing your programme.

You should also aim to include some cardiovascular exercise to keep your heart and lungs healthy. You should exercise three times a week at between 70-85% of your maximum heart-rate. A gym instructor will show you how to work this out. Research has shown that a programme of weight and cardio-vascular exercise three times a week for a total of 45 minutes helped to reduce the blood abnormalities associated with lipodystrophy and to reduce fat accumulation in the trunk.

Some gyms, particularly in London, offer special exercise classes for people with HIV. Ask your HIV clinic or support group if they are aware of any you can join. Many hospitals have specialist HIV physiotherapists who may be able to offer advice on starting an exercise programme or some supervised sessions.

It is important to drink plenty of fluids if you are exercising to avoid dehydration. You should try to drink 150-250ml every 15 minutes you are training and more in warm weather.

Try and eat a meal high in starchy food (complex carbohydrates) as soon as possible after each session. Carbohydrates are needed to fuel and build new muscle. If you do not want to, or cannot afford to go to a gym, then try to do any activity which raises your heart rate and breaks a sweat.

Anabolic steroids

In a very small number of cases of severe muscle wasting, anabolic steroids may be prescribed by the doctor to help promote muscle gain. However, there is no evidence that this weight increase is maintained in the long term, and similar gains in muscle can be achieved by diet and exercise alone. Also, anabolic steroids can produce some unpleasant side effects such as mood swings, irritability, shrinking of the testicles and changes in liver function. Speak to your doctor or dietitian for further advice.

Many people use anabolic steroids that they have illegally bought. You should be aware that there are many kinds of steroids available at differing strength and some can cause serious damage to the liver.

Testosterone

If you are a man and feeling lethargic, find it difficult to put on weight, are not benefiting from resistance exercise (weights), or lack interest in sex, then it might be worth asking your doctor to do a blood test to test your testosterone level. Approximately 40% of HIV-positive men will have low testosterone at some time and your doctor can prescribe tablets, gels, patches or injections to boost it.

Creatine

Creatine has been promoted to athletes and body builders as a supplement that can provide extra energy to muscles, therefore building greater endurance and strength. It also draws water into muscles fibres, increasing their size, and may the growth of muscle tissue.

The supplement is widely available, but its use is controversial in sports circles; many regard its use as a means of bulking muscles with water, and see little convincing evidence that it improves performance except in activities that require a short burst of energy.

Studies suggest that creatine can increase lean body mass in HIV-positive men when used with resistance exercise (weight training), but the use of creatine does not increase strength.

People with HIV also need to be aware of the risk of long-term toxicity with creatine supplementation. Apart from causing muscle pain and cramping in the shorter term, creatine may also cause kidney damage with longer-term use, especially if the dose is too high or you are already suffering from kidney problems. There may be a particular risk of kidney problems if you are taking tenofovir (Viread), tenofovir-containing drugs (Atripla and Truvada) or other drugs associated with raised creatine levels.

Human growth hormone

Human growth hormone assists the development of muscle tissue and trials have been undertaken to see if it is of benefit in the treatment of HIV-related wasting.

Trials have also been undertaken to see if human growth hormone has any impact on the body shape changes associated with lipodystrophy. See the booklet in this series, Lipodystrophy for more details.

Appetite stimulants

If you have a low appetite and are not eating enough to maintain or gain weight, appetite stimulants may be effective. An alcoholic drink may improve appetite before meals and the illegal drug cannabis is used by some people to stimulate their desire for food.

Artificial feeding

It is important to stress that most people with HIV meet their nutritional requirements through normal eating and drinking. However, if you are finding it difficult to gain weight despite increasing your food and supplement intake, then you may benefit, in some circumstances, for example if you have been very ill, from tube feeding. Two forms are commonly used.

Nasogastric feeding

A very fine tube is passed into the stomach through the nose. It is usually used to boost nutritional intake in the short-term, perhaps for a couple of weeks. This can be a useful way of reducing weight loss during or after an acute infection or period of illness.

Gastrostomy (PEG) feeding

A fine tube is placed in the stomach (during an endoscopy) which comes out through the stomach wall. This is useful for people who have longer-term weight-loss problems.

Artificial feeding may seem worrying, but it can provide a useful short or longer-term solution in some circumstances and can take away the pressure of trying to eat or drink enough.