About this booklet
This booklet aims to help people who have rheumatoid arthritis, and their families and friends. It helps you understand rheumatoid arthritis – how it develops, and how to deal with it. After dealing with the most common questions which people ask about the disease, we show how three people have managed to cope with different forms of rheumatoid arthritis.
Near the end of the booklet you will find information on how to contact the Arthritis Research Campaign (arc). Finally, we have included a brief glossary of medical words (like cartilage). We have put these in italics when they are first used in the booklet.
Rheumatoid arthritis is a common disease which exists throughout the world. It affects more than 350,000 people in Britain.
Rheumatoid arthritis is a complicated disease so a short booklet like this cannot tell you everything about it. Rheumatoid arthritis is also a disease which varies a great deal from person to person. Please use this booklet as a guide to help you understand the disease and to help you in your discussions with your doctor and other health professionals who are treating you.
Do not be afraid to ask questions about your disease and about your treatment. The more you know, the easier it will be for you to cope with your disease.
Do not be afraid to tell your doctor about all your problems. The more s/he knows about how the disease is affecting you, the better s/he can tailor your treatment to your needs.
Managing rheumatoid arthritis involves a team of people. You are the most important member of that team. The information in this booklet will help you to understand the health professionals in the team, and will help you contribute effectively to the management of your disease.
What is rheumatoid arthritis?
Rheumatoid arthritis is a disease which makes the joints in the body become inflamed. There is a more detailed description of how this inflammation works later in this booklet (see ‘What is inflammation?’ in the section ‘Questions and answers’).
To understand how rheumatoid arthritis develops you need to understand how a normal joint works. A joint is where two bones meet. Most of our joints are designed to allow the bones to move in certain directions. For example, the knee is the largest joint in the body, and also one of the most complicated because it has many important jobs. It must be strong enough to take our weight and must lock into position so we can stand upright. But it also has to act as a hinge so we can walk. It must withstand extreme stresses, twists and turns, such as when we run or play sports.
Figure 1 shows a normal joint. The end of each bone is covered with cartilage which has a very smooth slippery surface. The cartilage allows the ends of the bones to move against each other almost without friction. It also acts as a shock absorber. The joint is surrounded by a membrane (the synovium) which produces a small amount of thick fluid (synovial fluid). This fluid acts as a lubricant to keep the cartilage slippery and help the joint to move smoothly. The synovium has a tough outer layer of ligaments called the capsule which holds the joint in place and stops the bones moving too much.
The changes that take place in rheumatoid arthritis are shown in Figure 2. Inflammation takes place within the synovium. The result is very similar to inflammation which you may have seen taking place within your eye – it goes red, it swells, it cries and it hurts. The redness is caused by the flow of blood increasing. As a result, the inflamed joint may feel warm. The swelling is caused partly by a build-up of fluid and cells in the synovium. The ‘crying’ of the joint also produces swelling. In this case it is not tears but extra synovial fluid which is produced. The joint hurts because of two types of pain:
- Your nerve endings are irritated by the chemicals produced by the inflammation.
- The capsule is stretched by the swelling in the joint.
Is it the same as osteoarthritis?
No, osteoarthritis is a different disease. Rheumatoid arthritis is caused by inflammation in the lining of the joint. Osteoarthritis is more like a wear process, in which the cartilage in the joint fails to withstand the loads placed on it. Some inflammation does occur in osteoarthritis, but it is not the same as that in rheumatoid arthritis. Some wear may take place in damaged joints in rheumatoid arthritis, but this is a late complication of the disease. The two diseases are quite different in their treatment and it is important not to confuse the two. If you have any doubt about which type of arthritis you have, ask your doctor.
How does rheumatoid arthritis affect different people?
Our bodies normally produce inflammation to destroy things, such as bacteria, which cause illness. We do not know what sets off the inflammation in the joints of someone with rheumatoid arthritis, but the result is the same – something is attacked and perhaps destroyed. Unfortunately, in rheumatoid arthritis our own tissues in the joints are attacked. This causes damage to the cartilage and sometimes the bone itself. It may also damage any ligaments within the joints.
The extent to which this happens varies a great deal from person to person. Some people have little or no damage to the joints, or suffer only very minor damage to a few joints. Most people with rheumatoid arthritis have some damage in a number of joints, and a few people – about 1 in every 20 with rheumatoid arthritis (5%) – have quite severe damage in a lot of joints.
Once joints have been damaged by inflammation they are not very good at healing. Because of this, modern treatment tries to suppress the inflammation as much as possible to reduce the amount of damage which it causes to the joint. Suppressing inflammation early is one of the important ways in which treatment has advanced. And this is one of the reasons why rheumatoid arthritis is more effectively treated than it used to be.
Rheumatoid arthritis does not just affect the joints. Tendons are like ropes which run in lubricated tubes. The lubricating system is very similar to that in the joints themselves, so it is not surprising that tendons can also be affected by rheumatoid arthritis. In a few people, other parts of the body such as the lungs and the blood vessels become inflamed.
Inflammation in the joints can make some people feel generally ill. Sometimes this leads to overwhelming tiredness or fatigue, which may be more difficult to cope with than the painful joints. ‘Feeling tired’ is a symptom which may get little sympathy from those around you, who must be told that this is an important symptom of your disease.
One problem with rheumatoid arthritis is that the symptoms tend to come and go with no particular pattern. You may have ‘flare-ups’ – periods when the joints become more inflamed and painful. Sometimes this has an obvious cause – either physical, such as unaccustomed physical exertion or another illness, or emotional, such as a bereavement. Usually there is no obvious cause, however hard you think about possible triggers. This unpredictability is frustrating and sometimes makes it difficult to plan ahead.
Rheumatoid arthritis can be a serious disease with a lot of symptoms. But for most people, especially if treated appropriately, there may be few symptoms, giving the opportunity for a full, normal life.
Who gets rheumatoid arthritis?
Many people believe that rheumatoid arthritis only exists in places with cool, damp climates such as Britain. This is not true. It exists all over the world, although the more severe cases are found more often in Northern Europe.
More than 350,000 people in Britain have rheumatoid arthritis. It can start at any age, from children to those in their 90s. The most common age for the disease to start is between 30 and 50, and women are affected more often than men.
Does it run in families?
Most people with rheumatoid arthritis have no near relatives with the disease. There are a few families with several members affected, but they are quite uncommon. There is not a strong tendency to pass rheumatoid arthritis on to your children. Remember, there are a lot of causes of arthritis and rheumatism, and if other family members develop symptoms of arthritis these are often found to be due to other kinds of arthritis which are nothing to do with rheumatoid arthritis.
How does rheumatoid arthritis develop?
The start of the disease
In most people rheumatoid arthritis starts quite slowly. A few joints – often the fingers, wrists or the balls of the feet – become uncomfortable and may swell, often intermittently. You may feel stiff when you wake up in the morning. Many people only seek help from the doctor when the symptoms become more severe or more frequent.
In about 1 in 5 people with rheumatoid arthritis (20%) the disease develops very rapidly. There may be a sudden onset of pain and swelling in a lot of joints, with severe morning stiffness and great difficulty doing everyday tasks.
Along with pain and swelling in the joints you may feel tired, depressed or irritable, even with mild arthritis. You may also feel frightened about the future, and angry – ‘Why has this happened to me?’. At the moment there is no answer to that question, but this booklet should help you understand what is going on.
When should I go to the doctor?
It is very important that treatment for rheumatoid arthritis is started as oon as possible. This means it is essential that you see your doctor as soon as possible if you have any symptoms which might be caused by rheumatoid arthritis, such as pain and swelling in the joints and stiffness in the mornings. It may not be rheumatoid arthritis as there are many other causes of joint pain, but it is important to diagnose arthritis as soon as possible. To help with diagnosis many rheumatology departments have ‘Early Arthritis Clinics’. When patients are referred by their GP with symptoms which might be due to rheumatoid arthritis, these clinics aim to see them very quickly. The more we learn about the disease, the more we realize that early diagnosis and early treatment are very important if it is to be managed effectively.
How will it progress?
This is the single question that most people want answered. For each individual the answer is ‘We don’t know’. However, from the study of a large number of people with rheumatoid arthritis we can give some guidelines (see Figure 3).
Some people, maybe as many as 1 in 5 (20%), always have very mild rheumatoid arthritis which causes few problems.
Most people follow a pattern of flare-ups of the disease with periods of months or even years between each flare-up when there is little inflammation. This does not mean there are no problems between flare-ups, as some damage is done to the joints every time they are inflamed. These people will have some problems with their joints and may have to modify their activities a little, but overall they will lead normal lives.
A few people, no more than 1 in 20 (5%), will have rheumatoid arthritis which becomes progressively worse, often quite quickly. These are also the people who tend to have inflammation in other parts of the body as well as their joints.
One problem in looking at how rheumatoid arthritis affects other people is that you will tend to notice the ones who do badly much more than the ones who do well. Because of their disease, you are more likely to see them at your doctor’s surgery or in the hospital. Because they may have some signs of disability, you are more likely to notice them in everyday life. Always remember they are a small minority, and that you are more likely to be among those who do well than those who do badly.
Are other parts of the body involved?
Although the disease is called rheumatoid arthritis, it is not just joints that are affected. Most people have some general problems such as fatigue (tiredness) and stiffness. Anaemia (lack of red blood cells) is very common, and is now more often caused by the disease itself rather than the drugs used to treat it. Some people with uncontrolled rheumatoid arthritis lose weight, and many complain of hotness and sweating brought on by the inflammation.
Sometimes other organs are involved. There may be inflammation in the eyes, and they quite often become dry and irritable. Inflammation may also affect the lungs and, rarely, the membrane around the heart. Rheumatoid nodules may appear. These are fleshy lumps which usually occur just below the elbows, but may appear on hands and feet as well. They may occur in other places but this is rare. If there is any doubt about the cause of any lumps, the doctor can if necessary remove a piece from them which allows them to be easily checked and identified under a microscope.
How do doctors diagnose rheumatoid arthritis?
There is no test which can make a certain diagnosis of early rheumatoid arthritis. Doctors have to make what is known as a ‘clinical diagnosis’, where they have to put together all the information from listening to you and examining you and coming to a diagnosis based on this information. This is one of the reasons why you should tell your doctor all the symptoms you have had, not just the ones you think are important.
There are two kinds of test which may help in confirming the diagnosis:
- blood tests
- x-rays and other imaging techniques.
Blood tests may show you are anaemic, a problem which affects about 8 out of 10 of people with rheumatoid arthritis (80%). They may also detect changes in your blood which are produced by inflammation. The original test of this type was called the erythrocyte sedimentation rate (ESR). More recently the plasma viscosity (PV) test has been used, and the most recent test is for a protein called C-reactive protein (CRP). Each of these may show a high value when inflammation is present. Which test is used depends on the laboratory to which your doctor sends blood samples.
The ‘rheumatoid factor’ is another blood protein which is produced by a reaction in the immune system. About 8 out of 10 people with rheumatoid arthritis (80%) have positive tests for this protein. But its presence does not make the diagnosis certain – about 1 in 20 people without rheumatoid arthritis (5%) also have positive tests. Also, only half the people have a positive rheumatoid factor when the arthritis starts. So although the rheumatoid factor test is sometimes called ‘the test for rheumatoid arthritis’, it isn’t really. It is just one of the tests that helps doctors make the diagnosis.
New tests are being developed which are more accurate in diagnosing rheumatoid arthritis. These will make early diagnosis easier in the future.
X-rays and other imaging techniques
X-rays can reveal any damage caused to the joints by the inflammation in rheumatoid arthritis. One thing which may puzzle you is that you may have x-rays taken of your feet even if you have not complained about them. This is because the changes caused by rheumatoid arthritis often appear in the feet before they appear in other joints.
Doctors now want to make the diagnosis of rheumatoid arthritis even before the changes show up on the x-rays. Magnetic resonance imaging (MRI) and ultrasound scanning are more sensitive for picking up changes and are being studied to see how useful they are for diagnosing early disease and monitoring progress. They may be widely used in the future.
How can rheumatoid arthritis be treated?
We have not yet found a cure for rheumatoid arthritis, but treatment is improving all the time. A team of health professionals will work with you to try to get the best possible result. You are by far the most important person in that team, and one way you can help is by understanding as much as possible about your disease and its treatment. Reading this booklet is part of that process, but you will also find other arc booklets which expand on what is said here. Please read these too, as they are all helpful.
There are three main ways of treating rheumatoid arthritis:
- Taking care of your joints You can do this by following the practical tips in the next part of this booklet. (See also the arc booklet ‘Looking After Your Joints When You Have Rheumatoid Arthritis’.)
- Treatment with drugs Many people are worried about taking drugs because of the risks of side-effects, so this is discussed in detail later in this booklet.
- Surgery This is occasionally needed. You may receive advice about the need for surgery both from your rheumatologist and from a surgeon with a special interest in surgery for arthritis. Operations vary from quite minor ones such as the release of a nerve or a tendon to major surgery such as joint replacement.
How can I take care of my joints?
Balancing rest and exercise
One of the most important balancing acts you will need to achieve is the balance between rest and exercise. We have known for centuries that resting inflamed joints makes them more comfortable. However, the joints and muscles are parts of the locomotor system, the parts of the body which are involved in movement. Without movement your joints will stiffen and your muscles will waste away. So what should you do? The most important thing is to use your muscles and joints as much as possible without harming them. This helps retain movement and stops muscles wasting away. We also know that exercise is a good thing in general, and that exercise helps you feel better.
How do you know if you are doing harm? Some people have been told it is best to stop as soon as something hurts. This is not necessarily true. The signs to stop are if a particular activity causes one or more joints to become warm and swollen or if there is severe pain. If neither of these things happens, keep going.
There is no magic formula which can tell you how to balance rest and exercise – it is something you will need to discover for yourself. There are some things worth bearing in mind. If you are having a good day, avoid overdoing things. This particularly applies to tasks such as housework or gardening. Many people suffer the next day because of overexertion on a good day. Do make it clear to family and friends that not all days are the same. They must realize that activities you find easy on a good day may be impossible on a bad one. If some activity always causes problems, ask yourself if it is really essential, and if it is could it be done in an easier way (or by someone else)? But above all use both periods of activity and periods of rest to their best advantage.
What about sport?
If you have rheumatoid arthritis you should avoid contact sports such as rugby or football, and should probably avoid other violent types of exercise such as squash. Do continue with less violent activity such as badminton or walking. Always take a lot of care over your footwear if you are playing sport. Good shoes with shock-absorbing soles are essential, as is a good warm-up routine. Swimming is the best exercise of all. The muscles can be exercised with minimal strain on the joints, and the level of activity can be varied from very mild to very strenuous. If you cannot swim, learning to swim could be one of the best investments you can make in your future.
Many people now go to gyms or health clubs and many people with rheumatoid arthritis find them a valuable part of their lives. If you go, do tell the fitness instructor about your disease so that an appropriate exercise plan can be developed for you. Your physiotherapist can advise about this too. In general it is best to avoid exercises involving hard impacts, such as step exercises. Aquaerobics (aerobics in a swimming pool) is a very valuable form of exercise for most people.
Protecting your joints
Protect your joints from unnecessary strain. There are different ways of carrying out many everyday activities, so use the methods which put the least strain on your joints. Your occupational therapist can give you detailed advice about this, and also about ways of avoiding some tasks or using simple aids or adaptations to make them easier. Help of this sort can often allow you to continue many activities despite having rheumatoid arthritis. Do ask for, and listen to, advice which will help you increase the activities you can undertake.
How can drugs be used to treat rheumatoid arthritis?
Many people are worried about taking drugs because of the risks of side-effects. This anxiety is often increased by sensational newspaper reporting. We have to accept that all drugs have side-effects, including common everyday drugs such as alcohol and caffeine – and especially nicotine. For most people with rheumatoid arthritis, the benefits of drug treatment far outweigh any possible side-effects. Treatment is more effective than ever, and drugs are checked for safety more carefully than ever before.
Before we look at the specific drugs used for rheumatoid arthritis, three things are worth thinking about:
- First, if there were a drug-free, side-effect-free wonder cure for rheumatoid arthritis available, we would know about it. Do not believe tales about treatments of this kind. They do not exist.
- Second, some of your friends or relatives may take a contemptuous view of drug-taking, with comments like ‘You’d never catch me poisoning my body with that rubbish’. Remember, they do not have your disease and do not need your treatment, so that is an attitude they can afford to take. Discuss treatment with your friends and relatives, but remember it is your disease and your body, and you deserve the best possible advice which will be given to you by your rheumatology team and your general practitioner’s team.
- Third, remember that the earlier treatment is started the more effective it will be. Think carefully about your treatment, but do not delay until your joints are badly damaged. Treatment is less effective when it starts late. (See arc leaflet ‘Drugs and Arthritis‘.)
Which drugs are used?
Several of the drugs mentioned here have more than one name. This is because each drug is given an ‘approved’ name, but each manufacturer gives their own brand name to the drug. For example, ‘diclofenac’ is an approved name; ‘Voltarol’ is diclofenac made by Novartis, and ‘Diclomax’ is diclofenac made by Provalis. It can be very confusing. If you have any doubt ask your doctor, pharmacist or nurse for advice. We will use the approved names here.
Four kinds of drugs may be used to treat rheumatoid arthritis; analgesics, non-steroidal anti-inflammatory drugs (NSAIDs), disease-modifying anti-rheumatic drugs (DMARDs) and corticosteroids.
These drugs are painkillers. They are not useful by themselves as a treatment for rheumatoid arthritis, but they are useful to ‘top up’ the pain-relieving effects of other, more specific, drugs. Paracetamol is most often used. It may be given either by itself, or alongside codeine tablets, or in combination tablets in which it is combined with codeine or other drugs. Co-codamol is a combination tablet which contains paracetamol and codeine. Some stronger painkillers such as tramadol are now available. The most common side-effect of analgesics is constipation, which can occasionally be severe.
2. Non-steroidal anti-inflammatory drugs (NSAIDs)
The first drug in this group was aspirin, which used to be given in very large doses to treat arthritis (10–20 tablets a day). There are now about 20 drugs of this kind available. They reduce pain and swelling and start working within a few hours. The effect of some will only last a few hours but others are effective all day. You will need to work out the individual dose and preparation best for you in consultation with your doctor.
Although NSAIDs are very useful drugs, they do have a tendency to cause indigestion and, rarely, bleeding from the stomach. There have been two approaches to reducing this problem. Extra drugs can be given alongside the NSAIDs to prevent the side-effects. The most potent of these are called proton pump inhibitors (PPIs) which both reduce indigestion and protect the stomach. Many people feel uncomfortable in taking drugs just to avoid the side-effects of other drugs, but most people with rheumatoid arthritis do need the pain-relieving effects of their NSAIDs, so such a combination might be essential.
The other approach relies on our growing understanding of the way in which NSAIDs cause their good and bad effects. Both are due to their effect on an enzyme called cyclo-oxygenase (COX). We now know that COX exists in two forms, called COX-1 and COX-2. It is the effect on COX-1 which causes side-effects such as the stomach problems and the effect on COX-2 which reduces pain and inflammation. Some of the newer members of the NSAID family have very little effect on COX-1 and are therefore less likely to cause side-effects. You may hear them referred to as COX-2 inhibitors or coxibs. By using some combination of safer tablets and protective medication for the stomach it is now possible to find an effective form of NSAID medication for most people. (See arc leaflet ‘Non-Steroidal Anti-Inflammatory Drugs’.)
3. Disease-modifying anti-rheumatic drugs (DMARDs)
As their name suggests, these drugs do not treat the symptoms of rheumatoid arthritis but reduce the effects of the disease itself. They do improve symptoms over time, but they are not painkillers – they only reduce pain and stiffness by reducing the underlying rheumatoid process in the joints. They also appear to slow down the effects of the disease on the joints, especially if they are taken early in the course of the disease.
These drugs are our most important weapons in combating rheumatoid arthritis. They do not act quickly, taking weeks or even months to become effective. It is important to continue taking them, even if they do not seem to be working at first. They are taken for long periods, usually many years. Not everyone with rheumatoid arthritis will need one of these drugs, but most people with rheumatoid arthritis should expect to take drugs of this type, sometimes for the rest of their lives. They can all cause side-effects, which only very rarely are dangerous. Because of this they all require regular supervision by doctors and nurses who understand them. This often includes regular blood and urine tests. These are important, as they ensure your safety. With careful, knowledgeable supervision, these drugs are not only safe but also very effective in treating rheumatoid arthritis. There are a number of drugs in this group, and new ones are on the way. A few of the more commonly used ones are described below.
Sulphasalazine This drug was first made more than 50 years ago and was designed to treat rheumatoid arthritis. It was not properly tested at that time, but has come into common use in the past 20 years. It is taken by mouth in a dose which is slowly increased. Side-effects such as a feeling of sickness are usually short-lasting. (See arc leaflet ‘Sulphasalazine’.)
Gold Gold injections have been used to treat rheumatoid arthritis since the 1930s. The injections are given each week at first, although the frequency may be decreased as the gold becomes effective. Gold injections can be continued for life if they are helpful. (See arc leaflet ‘Gold by Intramuscular Injection’.) Side-effects can occur, affecting the blood and the kidneys, and regular blood and urine tests are used to check for any abnormalities. Skin irritation may sometimes occur. Gold tablets are now available, although they are not as effective as the injections.
Penicillamine This drug is a distant relative of penicillin, but can be used safely by people who are allergic to penicillin. It is taken by mouth in a slowly increasing dose. Its effects, side-effects and precautions are very
similar to those of gold injections. Occasionally penicillamine can diminish your sense of taste, but this is short-lasting and disappears after a time. (See arc leaflet ‘Penicillamine’.)
Methotrexate This drug is immunosuppressive, that is it has the effect of suppressing the immune system. It is usually taken by mouth in weekly doses, but can also be given by weekly injections. It is probably the most effective of the conventional disease-modifying drugs. Methotrexate should not be taken by pregnant women or by either men or women who are wishing to start a family, so it is essential to take effective contraceptive precautions while taking methotrexate. Most people also take a small dose of the vitamin folic acid with their methotrexate, as this reduces side-effects. The main side-effects are nausea and indigestion. Methotrexate can affect the blood (one of the effects can be that fewer blood cells are made), but this is unlikely to be a problem if regular blood tests are undertaken. There is also a slightly increased risk of infections while you are on methotrexate. Note that if you drink alcohol you should only drink it in small amounts because methotrexate and alcohol can interact and damage your liver. Discuss this with your doctor or nurse. (See arc leaflet ‘Methotrexate’.)
Azathioprine This is also an immunosuppressive drug, although a little less effective than methotrexate for most people. Similar blood tests need to be taken while it is being used. (See arc leaflet ‘Azathioprine’.)
Leflunomide This is a more recently introduced drug which is about as effective as methotrexate. It is given as a daily dose by mouth, often with a bigger ‘loading’ dose in the first few days. The main side-effects are abdominal (tummy) pain, sickness and diarrhoea, all of which are quite common. Women must not become pregnant while taking leflunomide, nor for 2 years after treatment has stopped unless the drug is ‘washed out’ of the system. Men taking leflunomide should not father children until 3 months after stopping the drug. Regular blood tests are needed while taking leflunomide. (See arc leaflet ‘Leflunomide’.)
BIOLOGICAL THERAPIES The most recently introduced disease-modifying treatments for rheumatoid arthritis are known as biological therapies. This name is used because they have been developed through our increased understanding of the processes in the body which lead to inflammation and damage in joints. This knowledge has enabled scientists to develop drugs which target individual molecules which are involved in these processes. This has led to some new and very effective treatments for rheumatoid arthritis. In the case of infliximab, the discoveries which led to its development arose from arc-funded research.
The first two of these drugs to be approved for use by the National Institute of Clinical Excellence (NICE) both target a substance called TNF. This has a key role in the complicated process of inflammation. The drugs are sometimes referred to as ‘anti-TNF’ therapies.
- Infliximab is given by an intravenous ‘drip’ every 6 weeks, either in a hospital day unit or in a dedicated area within the rheumatology department. It is always given in combination with methotrexate, as this prevents the body developing antibodies to infliximab. It is not, therefore, suitable for anyone who has had to stop methotrexate because of side-effects, but it is useful in people who have found that methotrexate by itself does not work. Treatment with infliximab is generally safe, although some people do have brief reactions to the drips. There is also a tendency for increased infections in people treated with infliximab. These are usually minor infections of the airways such as colds, but occasionally more severe infections can occur and rarely old tuberculosis may be reactivated. (See arc leaflets ‘Infliximab’ and ‘Methotrexate’.)
- Etanercept is given twice a week by injection just under the skin (subcutaneous injection). People who are prescribed this drug are taught to inject themselves, which most people manage very easily. Etanercept can be given alone or in combination with methotrexate. Local discomfort at the injection site is the most common side-effect. As with infliximab, it can make both minor and more serious infections more likely. (See arc leaflet ‘Etanercept’.)
These are both new drugs, so any long-term side-effects are not yet known. In general, however, the monitoring of these drugs is aimed as much at assessing how well they work as at checking safety, although people taking methotrexate as well will need the usual safety monitoring for that drug. In some people these drugs have proved very effective in improving their arthritis and in producing a feeling of well-being. Other anti-TNF therapies are due to become available in the next few years, including adalimumab in 2003.
- Anakinra works in a different way from the anti-TNF drugs. It inhibits one of the messenger substances in the body called interleukin-1 (IL-1). It is given by daily injections under the skin which patients are taught to give themselves. It is used along with methotrexate when that drug is proving ineffective by itself. Side-effects include pain at the injection sites and some increase in infections. Regular blood monitoring is needed. (See arc leaflet ‘Anakinra’.)
Because biological therapies are very expensive and there is little experience of their long-term use, a central register has been set up at the arc Epidemiology Unit in Manchester. This allows the progress of all people taking these medications to be followed using a set of standard methods. This information will be invaluable in finding out how best to use these new drugs so that they give the most benefit.
Corticosteroids are often called ‘steroids’ for short. They are not the same as the ‘steroids’ used by athletes to build up their bodies – these are compounds properly called ‘anabolic steroids’. Cortisone, a natural hormone produced by the body, was first used in the 1950s to treat rheumatoid arthritis. From this early work two things were observed. First, corticosteroids (steroids) have a very powerful effect on inflammation, reducing it more than any other drug used. Secondly, there are quite a lot of side-effects if high-dose steroids are given for long periods of time, and these can cause problems such as osteoporosis. (See arc booklet ‘Osteoporosis‘.) Since then, a lot of research has been carried out to try and find the best way of gaining the benefits of steroids while minimising the side-effects. Steroids are now used in three ways:
- by injection into an inflamed joint. This is an effective way of reducing inflammation in that joint. Provided the injection is given carefully and skilfully, it is very safe. (See arc leaflet ‘Local Steroid Injections’.)
- by intramuscular or intravenous injection (sometimes called ‘pulses’) to damp down a severe inflammatory flare-up of arthritis. This form of treatment must also be used skilfully to maximise benefits and minimise side-effects.
- by mouth. If the steroids are used in low doses most of the side-effects are not a great problem, but even with low doses it is now recommended that anti-osteoporosis medication be taken if the steroids are used for more than 3 months. In general, rheumatologists like to use only small doses of steroids – 7.5 mg of prednisolone a day or less – to treat rheumatoid arthritis, but there are some rare complications of the disease such as vasculitis (inflammation of blood vessels) where higher doses are needed. (See arc leaflet ‘Steroid Tablets’.)
Used properly, steroids can be a very valuable treatment for rheumatoid arthritis and can help to control the symptoms of the disease.
Questions and answers
What is inflammation?
Inflammation is a normal body defence mechanism. If you did not have it you would die. It is there to help fight off invasion of the body, especially by bugs – and to deal with the chemicals they produce. Your body recognizes that something abnormal is present. It responds by increasing the blood flow to the area in order to bring in the body’s defences and to raise the temperature, which also helps in dealing with the unwanted germs or substances. The blood vessels become more leaky so that cells can move out of them to join in the attack.
The cells themselves produce chemical messengers which call other cells to join them in the immune response. These chemical messengers are the targets of the biological therapies mentioned earlier. The cells also produce chemicals designed to destroy the invader, and antibodies to help in the fight. The messengers, chemicals and antibodies are all the focus of research which may lead to new treatments for RA.
So why does inflammation occur in rheumatoid arthritis?
The process of inflammation described above starts off with some sort of foreign substance, such as a bug, invading the body. The process ends when the invader is overcome. Inflammation in rheumatoid arthritis is unusual for two reasons. First, nobody knows what starts it off. It seems that in rheumatoid arthritis the body thinks that a part of itself is an invader and therefore attacks it. Why this happens is unknown. Finding out why is a key to discovering a cure for rheumatoid arthritis. Because the body attacks itself in rheumatoid arthritis, it is known as an ‘autoimmune’ disease. Secondly, the inflammation in rheumatoid arthritis is unusual because it does not stop of its own accord – it becomes a long-lasting (chronic) process.
The main site of inflammation in rheumatoid arthritis is the lining (synovium) of the joints. This becomes swollen and full of cells. The destructive process may then attack the cartilage and bone in the joint. The swelling causes the tough capsule to stretch. When the swelling goes down the capsule remains stretched and fails to hold the joint in its proper position. As a result the joint becomes less stable and can move into unusual or deformed positions.
What about complementary therapies?
Many people with rheumatoid arthritis take ‘complementary’, ‘alternative’, or ‘natural’ therapies. It is quite understandable that people with rheumatoid arthritis want to do as much as possible to help themselves. Unfortunately, the promises made by most of these remedies are not borne out in reality. Certainly none of them offers either a cure or a reduction in joint damage caused by rheumatoid arthritis. Many are also very expensive, and add a financial burden to that of the disease.
Cod liver oil and other fish oils, evening primrose oil and some vitamins may have a mild effect on the symptoms of rheumatoid arthritis (see arc booklets ‘Diet and Arthritis‘ and ‘Complementary Therapies and Arthritis‘). Herbal remedies are usually safe to use, but some may interfere with your anti-rheumatic medication. A good herbal practitioner will be able to advise you about this. Do remember that some herbal remedies can have unpleasant side-effects. Treatments such as acupuncture, which some people find helpful, are now generally available on the NHS. Homeopathy is also available on the NHS in some places, but sadly has proved ineffective in treating rheumatoid arthritis. Massage is often very soothing and relaxing, although there is little evidence that specific oils add any particular benefit. Be careful what you buy, as unfortunately some ‘traditional’ medications, especially Chinese remedies, sold in this country have been found to contain large quantities of steroids and other drugs.
Most complementary therapies are harmless, and, as mentioned above, some may be of some help. You should be critical about whether you are getting a benefit from what you are doing. Do discuss any remedies you are thinking of taking with your doctor, nurse or pharmacist, and do remember the general rule: ‘Things that seem too good to be true are too good to be true’.
Is there a diet which will help my rheumatoid arthritis?
There is a lot of publicity for diets which claim to cure rheumatoid arthritis. None do. There is some scientific evidence that diets may help the symptoms in some people. A few people notice that individual foods tend to make their arthritis flare up. The foods which do this vary from person to person. If you find that an individual food causes your joints to flare up, then avoid it. Do not give up anything because it makes someone else’s joints flare up – remember, we are all different. (See arc booklet ‘Diet and Arthritis‘.)
Do any diets help everyone?
Probably not, but the ones most likely to help are low in saturated fats and high in unsaturated fats, especially fish oils. Supplements of fish oils and evening primrose oil are likely to help. There is some evidence that a very strict vegetarian diet can help, but you should consult your doctor or a dietitian before starting any strict diet as the disadvantages may outweigh the advantages. It is a good idea to make sure your weight is kept down. You put the equivalent of four times your body weight through your joints when you are just walking, so keep your weight down and reduce that stress.
Should I move to a different climate?
The weather does affect the symptoms of some people with rheumatoid arthritis, but does not affect the progression of the disease. Many people who are affected find warm weather better than cold, although damp heat often makes people uncomfortable. For some people, cold crisp winter days are the best of all.
If you do think of moving, try the new climate in all seasons before you make your final move. Also weigh up the consequences of leaving your friends and family, as well as the support of your familiar health care system. Above all, remember that a change of climate will not affect the disease itself and will not prevent it progressing.
Should I avoid becoming pregnant?
The answer is no, unless you already have a very large family which is consuming all your energy. Most mothers with rheumatoid arthritis feel better during pregnancy, and any flare-up of symptoms after the baby is born can be dealt with quickly. What is important is to make sure you are not taking any drugs which could harm your baby. Discuss your medication with your doctor before you become pregnant. (See arc booklet ‘Pregnancy and Arthritis‘.)
What about having sexual intercourse?
There is no reason at all why you should stop having intercourse. You may find that some positions for intercourse are more comfortable than others, so do experiment.
Is it all right for me to take the pill?
Yes, it will make no difference to your arthritis or its treatment, and it may be important if you are taking any drugs such as methotrexate or leflunomide which mean that pregnancy must be avoided.
What about work?
The aim of treatment is to keep you doing as many activities as you did before the arthritis started. This includes both work and hobbies. You should be able to keep on with your work, unless it involves a lot of manual effort. Help is available if your workplace has to be adapted because of your needs – ask your social worker. The employment service also offers help if you do need to change your job or retrain – ask the Disability Adviser at the Job Centre.
Some employers worry that people with rheumatoid arthritis will have to take a lot of time off work. This is not the case, but attending at out-patient clinics and for drug safety monitoring can get in the way of work. Therefore it is important that these visits are, as far as is possible, arranged at convenient times for you so that your work is disrupted as little as possible (see arc leaflet ‘Work and Arthritis’).
Why me? What have I done to get rheumatoid arthritis?
You have done nothing to bring on your disease. It is just random bad luck that means you have got it. Do not waste your energy trying to think how you or someone else could have caused your disease. Use all your energy to fight the disease and learn how to do as much as possible to minimise the effects it has on you. Modern drugs and a helpful rheumatology team make an enormous difference to rheumatoid arthritis, but the difference you make is just as great. You are the most important member of the rheumatology team, so make sure you make the strongest possible contribution to your own care.
How people cope: three case histories
These three case histories may help you to understand some of the different ways rheumatoid arthritis can affect people. Because the disease is so variable, we cannot say they are typical, and they do not necessarily suggest what will happen to you.
Mary has had rheumatoid arthritis for 24 years
It started when she was in her 40s. The condition came on quite quickly. Over a few days she noticed swelling and stiffness in her hands, and soon it had spread to most of her joints. At this stage Mary was in a lot of distress, she was very stiff and felt rotten. Her doctor realised it was arthritis straight away. Because it was very active, she was sent for a short spell of intensive treatment in hospital.
The condition slowly settled down. Since then she has developed minor deformity of her hands and has had an operation on her toes which were damaged. She uses a wrist support in the kitchen and takes tablets every day.
Mary is now well. She has had to be careful and respect her arthritis. But she can do all the things she wants to and has no difficulty in getting out and about. She still gets pain and stiffness, but it is well controlled and she feels healthy. Mary is philosophical about having arthritis, and grateful that it does not interfere too much with her otherwise normal life.
John’s arthritis started when he was 42
It came on gradually. He began to feel tired and unwell. He felt stiff in the mornings and ached all the time. One knee started to swell. He was struggling at work and couldn’t keep up with the children at the weekends.
When John was first told he had arthritis, he was shattered. He thought he was finished. He was angry, then depressed. But his arthritis improved with treatment. At one time he developed fluid in the lungs, and has some nodules on his elbow. But the pain and the ill-health have improved.
Sixteen years later John is still at work, and he can kick a ball about with his grandchildren. His greatest battle was in coming to terms with having rheumatoid arthritis.
Emily is 58
She is one of the unlucky ones who has had bad arthritis. It came on gradually, soon after the birth of her son, and grew steadily worse over the first few years.
She had a good spell on gold injections for a couple of years and was able to look after the house and children. But when she reached her 40s, several joints became deformed and damaged. She has had several spells in hospital for flare-ups and complications.
Now she has a plastic knee joint and a new hip. She has had operations on her wrists and feet as well. She takes tablets and does her exercises every day. Emily gets good and bad days, but keeps cheerful and can cope with the pain and stiffness. She uses a walking aid but can get about slowly. She is involved in a lot of local charity work and helps in the fight to find better ways of treating arthritis.
What are we learning from research?
We now understand far more about the process of inflammation, and this understanding has led to the promise of new and better forms of treatment for rheumatoid arthritis. Some of these new treatments are already being tried, and you will hear about them in publications such as Arthritis Today magazine. A lot of this research has been funded by arc. Much more needs to be done – in particular, we still need to find out what causes rheumatoid arthritis and how we can cure it.
Analgesics – painkillers. As well as dulling pain they lower raised body temperature, and most of them reduce inflammation.
Antibodies – blood proteins which are formed in response to germs, viruses or any other substances which the body sees as foreign or dangerous. The role of anti-bodies is to attack foreign substances and make them harmless.
Capsule – the tough, fibrous sleeve of ligaments around a joint. Its inner layer is the synovium.
Cartilage – strong material on bone ends that acts as a shock-absorber. Its slippery surface allows smooth movement between bones.
Corticosteroids – drugs which have a very powerful effect on inflammation. Often called ‘steroids’ for short.
C-reactive protein (CRP) – concentrations of this protein in the blood can be measured as a test of inflam-mation or disease activity.
Disease-modifying anti-rheumatic drugs (DMARDs) – drugs which reduce pain and stiffness in rheumatoid arthritis.
Erythrocyte sedimentation rate (ESR) – a test which shows the level of inflammation in the body and can help in the diagnosis of rheumatoid arthritis. It is based on the speed at which red blood cells (erythrocytes) settle in a sample of blood which has been separated in a centrifuge.
Locomotor system – the parts of the body which allow us to move. It includes bones, joints, muscles and other connective tissues.
Magnetic resonance imaging (MRI) – a type of scan which uses high-frequency radio waves to build up pictures of the inside of the body. It works by detecting water molecules in the body’s tissue.
Non-steroidal anti-inflammatory drugs (NSAIDs) – a large family of drugs, prescribed for different kinds of arthritis, which reduce inflammation and control pain, swelling and stiffness.
Plasma viscosity (PV) – a screening test for a number of diseases. It can be used to show disease activity in rheumatoid arthritis, psoriatic arthritis and lupus.
Proton-pump inhibitor (PPI) – a drug which acts on an enzyme in the cells of the stomach to reduce the secretion of gastric acid.
Synovial fluid – the fluid produced by the synovium to nourish and lubricate the joint.
Synovium – the capsule’s inner membrane that prod-uces synovial fluid.
Ultrasound scanning – A type of scan which uses high-frequency sound waves to examine and build up pictures of the inside of the body.