Rheumatoid Arthritis

Referral to a rheumatologist, tests & diagnosis of Rheumatoid Arthritis

A diagnosis is usually made by one of three routes. Some GPs carry out tests, make the diagnosis and then refer the person to a specialist - a rheumatologist, at their local hospital or a specialist hospital. For many people, after having discussed the initial symptoms with their GP, the GP will suspect that it is some form of arthritis but will refer the person to the rheumatologist to make a specific diagnosis of RA. A few people, who have quite severe symptoms at the start, go into hospital for care and tests to establish the cause.

Some people we interviewed were referred to the rheumatologist straight away, but this could take up to 18 months. One woman then aged 30, was a bit worried at being given an 'urgent referral', but was relieved when she saw the consultant and got a diagnosis.

Waiting times to see the consultant rheumatologist also varied. NHS Target waiting times are 13 weeks and most had been seen quite quickly. However, several people chose to pay to see a specialist; because they had health insurance; because they felt the wait to see an NHS specialist was too long; that they were not getting a diagnosis from their GP; or because their symptoms were affecting everyday activities and work and they wanted a quick diagnosis and treatment. Of the 38 people we interviewed six had seen a specialist privately and five of these had then transferred to NHS care. These people were mostly happy to pay to find out what the problem was and start treatment.

In making the diagnosis, nearly everyone had blood tests, the sample(s) being taken either by the GP (see 'Original symptoms and visiting the GP') or the specialist, and the results being positive, showed that they had rheumatoid arthritis (RA). This is referred to as sero-positive RA. For some people the rheumatoid factor blood test does not give a positive result immediately or in fact ever, even though they have RA and this is called sero-negative RA. This can delay getting the diagnosis from several months to a few years; one woman was not given a positive RA diagnosis for 20 years after her first symptoms.

Some people, but not all, are sent for x-rays, often of the hands and feet but if symptoms are elsewhere, then of that particular joint. People found having x-rays taken was not a problem (see 'Regular monitoring and other diagnostic tests'). One man describes how the rheumatologist examined him, took an x-ray of his ankle and did a blood test to make the diagnosis.

Various other tests were performed while doctors tried to diagnose the problem. One young woman had a liver biopsy and numerous other blood tests including those for tropical diseases and gonorrhea. One woman had muscle testing (electro-myogram) and another a Magnetic Resonance Imaging (MRI) scan (see 'Regular monitoring and other diagnostic tests').

Not everyone got a diagnosis of RA to begin with and other diagnoses were made. Some were of related conditions such as polymyalgia rheumatica, palindromic arthritis, inflammatory condition, polyarthritis and rheumatoid allergy. One woman was not happy with the diagnosis of psoriatic arthritis from the private specialist because from her reading she felt her symptoms were more like those of RA, so her GP referred her to an NHS consultant. Another woman describes how, after having an eleven year gap since a previous RA flare, she was initially told she had lupus (systemic lupus erythromatosus) and was relieved later when her rheumatologist confirmed that it was in fact RA causing her symptoms again. For those people whose symptoms began in childhood the diagnosis of Still's disease was made; this is now called juvenile idiopathic arthritis.

People whose illness began with severe symptoms were admitted to hospital as inpatients and given different treatments. One woman was admitted by ambulance. Two had fluid aspirated from the knees and one later had the joint injected and the leg put in plaster. Several people were admitted for bed rest either straight away or within a few weeks of being diagnosed. A woman with undiagnosed groin pain was given traction for 2 weeks. This type of immobilisation of joints is not thought to be best practice now and keeping joints moving is advised where possible.

Some rheumatologists reassured patients that 'it doesn't go on forever', 'it often burns itself out within 18 months' or 'it wasn't the end of the world and that I would be able to cope with it', but others gave the worst case scenarios of 'you'll be in a wheelchair by the time you are 30' or 'it could kill you'. Consultants often explained that it affected individuals differently.

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Both GPs and rheumatologists began treatment for patients with a variety of medication (see 'Painkillers', 'Anti-inflammatory drugs', 'Disease modifying anti-rheumatic drugs', 'Steroid tablets, injections and intravenous pulses').

NICE issued guidance on Rheumatoid arthritis' the management of rheumatoid arthritis in adults in Feb 2009. It includes information for GP’s on when a person should be referred to a specialist and initial tests to conduct.

Last reviewed March 2012.

Last updated March 2012.


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