The inflammatory arthritis pathway

The inflammatory arthritis pathway

Inflammatory arthritis is a term used to describe a group of conditions which affect your immune system. This means that your body’s defence system starts attacking your own tissues instead of germs, viruses and other foreign substances, which can cause pain, stiffness and joint damage. They’re also known as autoimmune diseases. The three most common forms of inflammatory arthritis are:

These conditions are also called systemic diseases because they can affect your whole body. They can happen at any age.

There’s no cure for these diseases at the moment, but the outlook for those diagnosed with inflammatory arthritis is significantly better than it was 20–30 years ago. Effective treatment begins much earlier and new drugs are available, which means less joint damage, less need for surgery and fewer complications.

Inflammatory arthritis isn’t the same as osteoarthritis, which happens when the cartilage in your joint wears away.

The inflammatory arthritis pathway is a guide to what information is available and might be useful for you at every key stage of your journey, from first noticing symptoms to specialist care if the disease progresses. The pathway directs you to organisations and information sources relevant at each step.

Step 1 – recognising symptoms before seeking help

At Step 1 you may be experiencing joint pain and/or back pain but haven’t yet visited your GP about your symptoms. You may have seen one of the following two posters which alert people to the common signs and symptoms of one of the three most common forms of inflammatory arthritis: rheumatoid arthritisankylosing spondylitis and psoriatic arthritis.

The Squeeze Test is one of the most reliable tests for rheumatoid arthritis and psoriatic arthritis and involves squeezing the patient's hand or foot across the knuckle joints as shown. If this test is unduly painful then it may indicate these conditions.

Test A shows an MCP (metacarpophalangeal) test.

Test B shows an MTP (metatarsophalangeal) test.

***diagrams included here on ARUK***

If you’re experiencing symptoms which might relate to inflammatory arthritis, don’t delay – seek help from your GP as soon as possible.

Step 2 – visiting the GP for the first time

At Step 2 you’ll visit your doctor for the first time. The links below will provide help about your first GP visit, controlling your symptoms and getting general health advice. There’s also other information that you may find helpful while waiting for your first specialist appointment, which should be within 4–6 weeks.

Inflammatory arthritis can often be difficult to diagnose, and a firm diagnosis can usually only be made by a consultant rheumatologist or a GP with a special interest in musculoskeletal disease (a GPwSI). Because the different forms of inflammatory arthritis are treated by specialist teams led by a consultant rheumatologist and are usually, though not always, hospital-based, this is a specialist area of care. This means that unless your GP has had additional training to be a specialist they may not have the level of experience, skill and knowledge needed to make a clinical diagnosis.

There’s no single test that you can take to tell you that you have rheumatoid arthritisankylosing spondylitis or psoriatic arthritis, and it’s important that if your GP suspects that you have one of these conditions, they should refer you as quickly as possible to a consultant rheumatologist to get a diagnosis.

The British Pain Society has a range of publications featuring in-depth guidance on managing pain. 

The NHS Live Well pages offer general health advice covering a range of topics including healthy eating, exercise and stopping smoking.

The Patients Association has a range of guides including one called Getting the most out of your GP appointment.

Your first specialist appointment should be within 4–6 weeks, but it may be sooner if waiting times in your area permit.

Step 3 – seeing the specialist for the first time following referral

At Step 3 you’ll see your specialist (most likely a consultant rheumatologist) for the first time. You may get a firm diagnosis during your first visit, but inflammatory arthritis is sometimes difficult to diagnose in the very early stages. No single test can tell you if you have rheumatoid arthritisankylosing spondylitis or psoriatic arthritis, so you may need further tests and visits to get to reach a diagnosis.

The links below will give you help with this step in your pathway and direct you to other organisations that can provide more information. This includes information on:

  • your first appointment with the specialist and how to prepare
  • possible treatments
  • personal care plans
  • the healthcare professionals who may be involved in your treatment

Read more about who will treat you.

Understanding NICE guidance (RA) is designed to help you understand the care and treatment options that should be available in the NHS for those with rheumatoid arthritis.

We suggest that you think about and make a note of everything you want to know before your first visit to see the specialist. This will help to ensure that all of your questions are answered during the consultation. It might be helpful to take a friend or family member with you too, as they may remember things afterwards that you didn’t take in.

Step 4 – tests, treatments and further information

At Step 4 you’ll get your first diagnosis and look at suitable treatment with your specialist team. At this stage, you may need to have a number of tests to help your specialist team decide on the best treatment for you. These tests could include:

  • blood tests
  • x-rays
  • ultrasound scans
  • Disease Activity Scores

These tests might seem a bit confusing to begin with, especially when you’ve only just been diagnosed, but your rheumatology nurse specialist should help to explain them to you on your first visit. During your first or second visit to a specialist you’ll usually meet the rheumatology nurse specialist. The nurse specialist will help to answer some of the questions you may have.

Healthtalkonline is a charity website which features interviews with a wide range of people with personal experience of conditions of the bones and joints, so that you can share in their stories.

Step 5 – ongoing care in primary and specialist care

At Step 5 you’ll start treatment. You’ll probably see your specialist team quite regularly to begin with, but your appointments will become less frequent once your team is confident that your condition is being well controlled.

You’ll need to go for regular blood tests at your GP surgery or the hospital. These will check how your condition is progressing and how you’re responding to treatment. Your GP will usually share some of your care with the specialist team.

Once your condition is under control, you and your team should review the disease and the impact it’s having on your life at least once a year.

If you have a problem or your symptoms flare, it’s important that you know how to access your team. You should have access to a nurse-led helpline number.

As well as the organisations listed below, which provide information specific to people at Step 5, you may also be interested in the following general information:

The Patients Association is an independent, national charity that highlights the concerns and needs of patients.

The Citizens Advice Bureau offers information on health rights, which covers what help is available through the NHS, patients’ rights, help with health costs, how to make a complaint, and health services for people abroad. 

Direct Gov details the support that may be available across a range of issues such as employment, transport and finances.

Most specialist teams have an advice line which is often run by the specialist nurse – make sure you know the number. Your GP is also an ongoing source of help and support.

Step 6 – managing the disease long term or dealing with complications

Step 6 is advanced disease and will only affect a small number of people. Advanced disease may involve organs such as your heart and lungs, which can cause serious complications, and/or may have other long-term conditions such as diabetes or heart disease. Rarely, other complications such as vasculitis can occur.

Remember, the outlook for those diagnosed with inflammatory arthritis today is significantly better than it was 20–30 years ago. With important new treatments now available and effective treatment beginning much earlier than used to be the case, the outlook is much brighter with less disability, less need for surgery and fewer complications. The more you can learn about your disease and how to manage it, the better.

The links below give information about possible complications. You can also find relevant organisations that can help, including those that provide help for carers.

Information on multi-organ (widespread) disease and more practical matters

Links to information on possible eye conditions

Links to information on the possible effects on major organs

Links to information on other possible related diseases

Glossary

A  B  C  D E  F  G  H  I  J  K  L  M  N  O  P  Q  R  S  T  U  V  W  X  Y  Z

A

Active disease  a condition which is developing and not currently under control.

Acupuncture  a method of obtaining pain relief that originated in China. Very fine needles are inserted, virtually painlessly, at a number of sites (called meridians) but not necessarily at the painful area. Pain relief is obtained by interfering with pain signals to the brain and by causing the release of natural painkillers (called endorphins).

Anaemia  a shortage of haemoglobin (oxygen-carrying pigment) in the blood which makes it more difficult for the blood to carry oxygen around the body. Anaemia can be caused by some rheumatic diseases such as rheumatoid arthritis or lupus, or by a shortage of iron in the diet. It can also be a side-effect of some drugs used to treat arthritis.

Analgesia  the term used to describe the range of drugs used to control pain from mild to strong treatments.

Ankylosing spondylitis (AS)  an inflammatory condition affecting the flexibility of the spine, causing reduction in movement and less commonly inflammation in large joints.

Antibody  a blood protein that forms in response to germs, viruses or any other substances that the body sees as foreign or dangerous. The role of antibodies is to attack these foreign substances and make them harmless.

Anti-CCP (anti cyclic citrullinated peptide)  a blood test used to help in the diagnosis of rheumatoid arthritis and differentiate it from other types of arthritis; sometimes to help evaluate the prognosis of a person with rheumatoid arthritis.

Anti-TNF (anti-tumour necrosis factor)  TNF is a chemical made by the immune system. When made in the joints it causes the process of inflammation and joint damage. Treatment with anti-TNFs removes the TNF from the joints.

Arthritis Impact Measurement Scale (AIMS)  multidimensional patient-completed questionnaire on health status, useful for evaluating the outcome of arthritis treatments and programmes.

Autoimmune disease  a disorder of the body’s defence mechanism (immune system), in which antibodies and other components of the immune system attack the body’s own tissue rather than germs, viruses and other foreign substances.

B

Biologics  a newer type of treatment for autoimmune diseases. These drugs target specific chemical messengers or cells that activate inflammation in the body.

Biomarkers  these are biologic molecules that are useful in measuring the presence or progression of a disease or the effects of a particular treatment. Anti-CCP is a biomarker.

BMI (Body Mass Index)  a calculation used as a simple way of assessing whether a person is overweight or underweight.

C

Capsule  the tough, fibrous sleeve of ligaments around a joint, which prevents the bones in the joint from moving too far. The inner layer of the capsule (the synovium) produces a fluid that helps to nourish the cartilage and lubricate the joint.

Carpal tunnel  the passageway within the wrist through which the tendons which bend the fingers and the median nerve pass.

Cartilage  a layer of tough, slippery tissue that covers the ends of the bones in a joint. It acts as a shock-absorber and allows smooth movement between bones.

Chronic  describes a disease or condition that persists throughout a person's life and must be managed because it cannot be cured.

Cognitive Behavioural Therapy (CBT)  is a talking therapy used to help people understand that their negative beliefs or 'negative self-talk' are often inaccurate and can lead to self-defeating emotions and behaviours. The aim of the therapy is to challenge these inaccurate, negative thoughts to help people feel better emotionally.

Comorbidity  the existence of two chronic diseases in one person at the same time; for example, a patient with the joint disease rheumatoid arthritis and the skin disease psoriasis.

Computerised Tomography (CT) scan  a type of scan that records images of sections or slices of the body using X-rays. These images are transformed by a computer into cross sectional pictures.

Connective tissue  joints, bones, cartilage and other tissue that supports and holds together different parts of the body.

Coping strategies (passive coping)  the way that people react to radical events (life-strains or stressors). People who have a chronic disease have to deal with the pain and stresses of their disease. When people experience an event as stressful, they begin to make efforts to 'cope' with that event. Two general types of coping strategies are problem-focussed coping, and emotion-focussed coping. Coping strategies are of great importance in relation to the extent of the negative influence the disease has on the patient.

Corticosteroids  a medication used for relief of inflammation and pain, sometimes called steroids.

C-reactive protein (CRP)  a protein found in the blood. The level of C-reactive protein in the blood rises in response to inflammation and a blood test for the protein can therefore be used as a measure of inflammation or disease activity.

Cytokines  cytokines are immune system cells (found in synovial fluid) that have been linked to the rheumatoid arthritis disease process of inflammation and cartilage destruction.

D

Disease Activity Score (DAS)  a score used to assess the level of disease activity in people with rheumatoid arthritis and guide treatment decisions. It is calculated through an examination of the joints, a consultation with the health care professional regarding the current level of disease activity and a blood test.

Dietician  a specialist in the study of nutrition.

Disease-modifying anti-rheumatoid drugs (DMARDs)  drugs used in rheumatoid arthritis and some other rheumatic diseases to suppress the disease and reduce inflammation. Unlike painkillers and non-steroidal anti-inflammatory drugs (NSAIDs), DMARDs treat the disease itself rather than just reducing the pain and stiffness caused by the disease. Examples of DMARDs are methotrexate, sulfasalazine, gold, infliximab, etanercept and adalimumab.

E

Enthesitis  inflammation of the sites (entheses) where tendons or ligaments attach to bone.

Erythrocyte sedimentation rate (ESR)  a test that shows the level of inflammation in the body and can help in the diagnosis of rheumatoid arthritis. Blood is separated in a machine with a rapidly rotating container (a centrifuge), then left to stand in a test tube. The ESR test measures the speed at which the red blood cells (erythrocytes) settle.

F

Facet joints  the facet joints are small joints at the back of the spine between the vertebrae that allow the spinal column to move.

Fibrosis  the formation of scar tissue sometimes caused by an exaggerated healing process. When it occurs in one of the body’s vital organs, fibrosis may impair the function of that organ.

Flare up  a period in which the symptoms of a disease reappear or worsen.

Full Blood Count (FBC)  to determine the general health status and to screen for a variety of disorders, such as anaemia and infection, inflammation, nutritional status and exposure to toxic substances.

G

General practitioner (GP)  the first point of contact for all patients with any type of illness. They are responsible for referring patients to specialists.

Glucose Test  blood test to determine whether or not your blood glucose level is within normal ranges; to screen for, diagnose and monitor diabetes, and hypoglycaemia (low blood glucose).

H

Haemoglobin (Hb)  this is a protein in the red blood cells which is responsible for carrying oxygen in the cells to the body.

Health Assessment Questionnaire (HAQ)  a questionnaire that asks whether you are able to carry out normal daily tasks around the home such as bathing, getting in and out of a chair and shopping, measuring functional mobility.

Hep B (Hepatitis B)  Hepatitis B antibodies are produced in response to exposure to the hepatitis B virus (HBV). The tests detect the presence of this antibody or of parts (antigens) of the virus itself. Used to diagnose and follow the course of an infection with hepatitis B or to determine if the vaccine against hepatitis B has produced the desired level of immunity.

Hep C (Hepatitis C)  blood test to determine if you've been exposed to the hepatitis C virus and have the antibodies in your blood.

HLA-B27 (Human Leucocyte Antigen-B27)  people who have this gene are more likely to have conditions such as reactive arthritis, psoriatic arthritis or ankylosing spondylitis.

Homeopathy  a complementary medicine that uses a dilute active substance which would normally cause symptoms similar to those being treated e.g. using a crushed bee sting to treat a bee sting.

Hydrotherapy  exercises that take place in water (usually a warm, shallow swimming pool or a special hydrotherapy bath) which can improve mobility, help relieve discomfort and promote recovery from injury.

I

Immune system  the tissues that enable the body to resist infection. They include the thymus (a gland that lies behind the breastbone), the bone marrow and the lymph nodes.

Immunoglobulins (also known as antibodies)  are proteins in the blood or other body fluids used by the body to neutralise bacteria and viruses. The results of this blood test are required before starting biologic treatments.

Immunosuppressant drugs  drugs that suppress the actions of the immune system. They’re often used in conditions such as rheumatoid arthritis where the immune system attacks the body’s own tissues.

Inflammation  a normal reaction to injury or infection of living tissues. The flow of blood increases, resulting in heat and redness in the affected tissues, and fluid and cells leak into the tissue, causing swelling.

Interleukin-1 (IL-1)  is one of the pro-inflammatory cytokines in the immune system thought to play a role in the disease process of rheumatoid arthritis, including bone erosion; the IL-1 receptor is the target of a new Biological Response Modifier, Anakinra.

J

Joint damage  affects the movement of joints and how well they function. Ultrasound is used at an early stage to detect inflammation which may or may not be visible on clinical examination as well as damage or erosion of the bones.

L

Ligaments  tough, fibrous bands anchoring the bones on either side of a joint and holding the joint together. In the spine they’re attached to the vertebrae and restrict spinal movements, therefore giving stability to the back.

Liver Function Tests (LFTs)  are used to detect any impact on the liver as a result of the prescribed treatment for inflammatory arthritis.

Lupus (Systemic Lupus Erythematosis SLE)  an autoimmune disease in which the immune system attacks the body’s own tissues. It can affect the skin, hair and joints and may also affect the internal organs.

M

Magnetic Resonance Imaging (MRI)  a type of scan that uses high-frequency radio waves in a strong magnetic field to build up pictures of the inside of the body. It works by detecting water molecules in the body’s tissue that give out a characteristic signal in the magnetic field. An MRI scan can show up soft-tissue structures as well as bones.

MCV (Mean Cell Volume)  a blood test to determine the size of the red blood cells and guide the diagnosis of anaemia (low numbers of red blood cells or low levels of haemoglobin within the cell).

Multi Disciplinary Team (MDT)  a group of health care and social care professionals who provide different services for patients in a co-ordinated way.

Musculoskeletal system  the system of muscles, tendons, ligaments, bones, joints and associated tissues that move the body and maintain its form.

N

Nerve block  an injection of local anaesthetic (often combined with a steroid preparation) around a nerve which causes temporary loss of sensation.

NHS Constitution  first published in 2009 and covers the NHS in England. Enshrined within it is the right to see information relating to you.

Non-steroidal anti-inflammatory drugs (NSAIDs)  a large family of drugs prescribed for different kinds of arthritis that reduce inflammation and control pain, swelling and stiffness. Common examples include ibuprofen, naproxen and diclofenac.

O

Occupational therapist (OT)  a therapist who helps you to get on with your daily activities (e.g. dressing, eating, bathing) by giving practical advice on aids, appliances and altering your technique.

Osteoarthritis (OA)  the most common form of arthritis (mainly affecting the joints in the fingers, knees, hips), causing cartilage thinning and bony overgrowths (osteophytes) and resulting in pain, swelling and stiffness.

Osteoporosis  a condition where bones become less dense and more fragile, which means they break or fracture more easily.

P

Phlebotomist  a professional who draws blood for analysis or transfusion.

Physiotherapist  a therapist who helps to keep your joints and muscles moving, helps ease pain and keeps you mobile.

Plasma viscosity (PV)  a screening test that measures the thickness or stickiness of the fluid in which blood cells are suspended. It’s used as an indicator of disease activity in a number of conditions including rheumatoid arthritis, psoriatic arthritis and lupus.

Platelets (small cells in the blood essential for the clotting mechanism)  a blood test to determine the level of platelets in the blood, as this can be influenced by the treatment prescribed for your arthritis.

Podiatrist  a trained foot specialist. The terms podiatrist and chiropodist mean the same thing, although podiatrist tends to be preferred by the profession. NHS podiatrists and chiropodists are state-registered, having followed a 3-year university-based training programme. The podiatrist or chiropodist can deal with many of the foot problems caused by arthritis.

Proton-pump inhibitor (PPI)  a drug that acts on an enzyme in the cells of the stomach to reduce the secretion of gastric acid. They’re often prescribed along with non-steroidal anti-inflammatory drugs (NSAIDs) to reduce side-effects from the NSAIDs.

Psoriatic arthritis (PsA)  a condition that causes inflammation in and around the joints usually affecting those who already have psoriasis (a scaly skin rash) but can precede any possible skin problems which may or may not develop.

QuantiFERON-TB Gold  a blood test to detect tuberculosis or previous exposure to tuberculosis.

R

Radiographer  a member of the health care team who takes X-rays and scans.

Raynaud’s phenomenon  a circulatory problem that causes the blood supply to certain parts of the body to be greatly reduced. It can cause the fingers and toes to go temporarily cold and numb and they turn white, then blue, then red before returning to normal.

Reactive arthritis  a relatively short-lived condition causing painful swelling of the joints. It develops after an infection of the bowel or genital tract, or less frequently after a throat infection.

Remission  the disappearance of the signs and symptoms of a disease.

Rheumatoid arthritis (RA)  an autoimmune disease that causes inflammation in the joints and less commonly inflammation in other parts of the body.

Rheumatoid factor (RF)  a blood protein produced by a reaction in the immune system. About 80% of people with rheumatoid arthritis test positive for this protein. However, it is possible to have rheumatoid arthritis or another form of inflammatory arthritis with a negative RF.

Rheumatoid nodule  a small lump of tissue which forms under the skin. Nodules are most common on the elbows, where they are usually painless. Nodules on the fingers can be a nuisance. Although they’re less common on the feet they tend to be more troublesome when they occur there. Nodules can sometimes be removed surgically, but there is no guarantee that they will not recur.

Rheumatologist  a consultant physician specialising in rheumatological diseases.

S

Sciatica  pain felt in the leg due to irritation of the sciatic nerve, a major nerve running from the spine to the leg. The pain is usually felt in the buttock, thigh and calf but can go all the way down to the toes.

Secondary Care  the second stage of the health care system, where a patient is referred by their GP for specialist treatment and care.

Self-management  is defined as a constant process of behavioural choices and decision making which can be achieved by changing knowledge, skills and attitudes and initiating behaviour change.

Septic arthritis  also known as infective arthritis and is very different from reactive arthritis. It occurs when there is an active infection within one joint but can also affect additional joints. It is a medical emergency and requires immediate hospital treatment.

Sharp Score  an X-ray measurement of changes in joint damage.

Sjogren’s syndrome (SS)  is a condition that mainly affects the glands that produce saliva and tears causing a reduction in the normal levels. It may be diagnosed as a primary condition or a secondary condition to rheumatoid arthritis.

Social worker  a professional responsible for helping individuals, groups or communities to enhance or restore their capacity for social functioning.

Specialist nurse (Clinical Nurse Specialist)  a senior nurse who has additional training in rheumatology enabling him/her to assess and monitor responses to treatment, to advise on the drugs prescribed, to teach injection techniques and offer support often via a designated Helpline.

Specialist registrar (SpR)  a doctor in the United Kingdom and Republic of Ireland who is receiving advanced training in a specialist field of medicine in order to become a consultant.

Synovial fluid  the fluid produced within the joint capsule that helps to nourish the cartilage and lubricate the joint.

Synovium  the inner membrane of the joint capsule that produces synovial fluid.

Systemic disease  a disease that can affect the whole body, or many parts of the body, including the internal organs.

T

T-cells  T-cells are a type of white blood cell which defend the body against disease but sometimes they start attacking the body's own tissue as in rheumatoid arthritis.

Tendon  a strong, fibrous band or cord that anchors muscle to bone.

Thyroid Function Tests (TFTs)  are a group of tests that are requested together to help evaluate the function of the thyroid gland and to help to diagnose thyroid disorders.

Triglycerides  a blood test to assess the level of triglycerides (the main component of animal fats & vegetable oils). High levels are linked to hardening of the arteries and the risk of heart disease and stroke.

U

Ultrasound scan  a type of scan that uses high-frequency sound waves to examine and build up pictures of the inside of the body.

Urea & Electrolytes (U & Es)  a routine blood test to evaluate kidney function and to check for any imbalance in the blood chemistry.

V

Vasculitis  inflammation in the walls of blood vessels. This can cause the blood flow to be reduced. Vasculitis can occur on its own (primary vasculitis) or as part of an established disease (secondary vasculitis) when it may be associated with rheumatoid arthritis, Sjogren’s syndrome or lupus.

Visual Analogue Scale (VAS)  a linear scale ranging from 0 – 10 on which a patient scores how much pain / fatigue they are experiencing from 0 = no pain / fatigue to 10 = extreme pain / fatigue.

X

X-Ray  used to detect disease or injury to the bones and joints.