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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 can vary and there can be delays in diagnosis. 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.

 

The urgent referral to the rheumatologist worried her but getting a diagnosis was a relief.

The urgent referral to the rheumatologist worried her but getting a diagnosis was a relief.

Age at interview: 31
Sex: Female
Age at diagnosis: 30
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Well you know I think by the time I'd gone back to him, I'd com, I had real, you know, I think it, it was a weeks, a matter of weeks, and I had really gone downhill. Then he, he you know, he did say, 'Well I think it is and I'm gonna to, I going to refer you straight to the, the hospital, you know, the local hospital that does it. And you can, you know we'll get you in there, you know, urgent referral.' And that's a bit, 'oooh' You know, but by that stage I just want to know what it was, you know. Everything goes through your mind is it, is it you know. I don't think it was cancer. I didn't, no I didn't, yeah I didn't think it was life threatening. I just wanted to know what it was. And I couldn't imagine you know, me having you know rheumatoid arthritis. But I have [laughs].

I, you know, and I went to see Dr [X] and he's my god [laughs]. He's, he was brilliant. He, you know, I'd like I said, I was at my last, I thought this is it, my life's over. And I went to see him and he, he explained everything. He, you know, everything, everything, everything you might not understand, everything, he said, but just you know, if you want to know anything, they give you loads of information. 

But I think, I don't think you; you just don't take it in. You're so relieved that's it's not you, you know, you, you're relieved that they've diagnosed something, it's not in the head kind of thing. You know, you're not, you're not, you're not going loopy, there is something wrong with you. Well, he just you know told me what could hap, you know, not what could happen in, in a couple of years time. He just told me that, what's was gonna happen to me then, you know. And after being prodded and you know, various blood tests, you know, it came down to, I did have rheumatoid arthritis, so. 

Waiting times to see the consultant rheumatologist also varied. The British Society of Rheumatology states one of its aims is for patients with RA to begin treatment within six weeks of referral and most patients are 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.

 

The symptoms were really getting him down, so he saw a specialist privately.

The symptoms were really getting him down, so he saw a specialist privately.

Age at interview: 46
Sex: Male
Age at diagnosis: 38
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So I went to the GP and straight away they diagnosed that it was arthritis they didn't actually diagnose it as RA at first.

They put me on some anti-inflamatories, got in touch with the specialist at the local hospital, but there was a waiting list for six months, so I waited about a month and my symptoms got really, really bad and I was a bit confused of what was going on really, cos I'd always been a fit and healthy person and I was just like, I just felt absolutely washed out, tiredness, the pain, the inflammation and these, and these flu like symptoms were just really getting me down and I was spending a lot of time off work, and me job, I was struggling with me job, so I decided to go privately.

Went to see a specialist at the, at a local private hospital and I got seen straight away and he did some tests, did some blood tests, diagnosed straight away with rheumatoid arthritis and it just happened that the actual specialist I saw was the specialist that I would have been seeing at the local hospital, so it sort of, I jumped the queue basically and went and he got me in a couple of weeks afterwards at his surgery and I started on the treatment straight away from then.

At first they did the x-rays and the joints were normal, there was no joint damage and that was fine, they put me on a course of RA drugs, Sulfasalazine, anti-inflamatories and painkillers.

 

Was initially told she had psoriatic arthritis but she read about it and thought it was...

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Was initially told she had psoriatic arthritis but she read about it and thought it was...

Age at interview: 29
Sex: Female
Age at diagnosis: 25
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My doctor, who wasn't my normal doctor he was just a practice doctor just said to me take Ibufen and go away basically. And that was in the January and then by May my knees were swelling, my hands were really swollen and I could hardly walk on the bottom of my feet. So I went back to my GP, but my normal doctor, and she done blood tests and all the tests that you could do and she was pretty sure it was some sort of arthritis but she didn't know what it was. And where I work you get private health care so I decided to go and see a private specialist and when I got to see him, when I was 15 I had, I'd don't' know if I'm going to say this right but it's psoriatic arthritis and he said it was that.

And so I started reading and my joints were not the same as psoriatic arthritis. And I got it in my head that I thought it was RA and I kept saying it to this doctor and he kept saying 'No, it's not that'. And he said, 'We've done a blood test and it says negative'. But then when I was reading it was saying that your blood can be negative for 3 years. So in the end I went back to my original doctor and I said what I thought and she was the one who said the mineral clinic are a good hospital and she referred me to them.

So that was, I first noticed I had problems in January '99 and I didn't get referred to them until July 2000, so I'd had a year and a half.

Well, like I said, the first GP wasn't understanding but then when I seen my second GP and this was my proper GP and she suggested, I suggested to her what I was going to do and she said that she thought it was a good idea. But it was basically me going to her and saying, because they couldn't find nothing wrong. But I just thought, they were pretty sure it some sort of arthritis so I thought if I go to someone who actually specialises in that then they might be able to find out what the problem was.

And what made you change from that consultant to an NHS one?

Because he kept saying it was psoriatic and I kept saying it wasn't. And he wouldn't do any more tests or look into it further, he just stuck to his guns on it and I just, I just had that feeling it wasn't what he was saying. So then I went back to my GP and I told her what I thought and she said, that's when she referred me to the clinic I'm at now because she said they were very good with people with arthritis.

And did you have to wait for that a long time?

No. I think I was possibly, may, it might have been about a month to 6 weeks that I had to wait but as soon as I went to see the consultant within a month I knew what was the matter.

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. Diagnosis has improved more recently due to the development of tests for the anti-CCP antibody, which is more specific and sensitive for RA, but requests for this test are restricted to specialist use in most places. 

 

Having sero-negative rheumatoid arthritis delayed a definite diagnosis for 9 years.

Having sero-negative rheumatoid arthritis delayed a definite diagnosis for 9 years.

Age at interview: 45
Sex: Female
Age at diagnosis: 39
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I had this ongoing scenario with no diagnosis and after 6 months I started to get pain in my bones. I also had muscle fatigue and my GP sent me to the local general hospital and they couldn't work out what it was. I was under the care of the local rheumatologist and this is going back to the late 70s.  

And the, I went back and I was under the care of this rheumatologist for a period of about 9 years, up until his retirement in '85, '86. And the level of treatment, though I still hadn't had a definite diagnosis all this time from the late 70s because I wasn't falling into any of the general patterns. It was only when the actual joint deterioration and there was actual evidence on the slides that it became apparent what way we were going and I was not able to go back to do the sports although I tried on a few occasions.  

But going back, I mean, from the point of arthritis and that I started to learn everything there was about it and I realised that even under rheumatoid arthritis there was certain, no, nobody was going to be the same, everybody's different. And I sort of fell under the, what is regarded as sero-negative because I didn't have the, the proteins in the blood that would show up to give a clear diagnostic process.

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.

 

The GP had her stiff neck x-rayed, thought it was RA, so sent her to a rheumatologist.

The GP had her stiff neck x-rayed, thought it was RA, so sent her to a rheumatologist.

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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Well after that initial appointment with my GP regarding the stiff neck he then, when the x-rays came back he then said, 'It's not just a stiff neck, it looks like the early stages of arthritis'. So that's when he wrote to the specialist hospital and I then had my first appointment. So that's when it was diagnosed, you know, as RA more than a stiff neck.

And how did you feel about being sent for an x-ray?

I think I wanted to know what was wrong because I knew by then that it wasn't, a stiff neck as I indicated at the beginning of the interview. So, yes I wanted to know what was wrong, because, you know as I said earlier, you know, I've always been a fit person and to have a this long, long period of a stiff neck wasn't, wasn't normal.

 

Tells what happened when he first saw the rheumatologist.

Tells what happened when he first saw the rheumatologist.

Age at interview: 55
Sex: Male
Age at diagnosis: 47
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So at this stage I obviously didn't know what the hell was happening to me. So the GP very quickly put me on quite a high dosage of steroids, which stopped the pain, and a lot of painkillers and sleeping tablets and things like that and got me an appointment as soon as possible at Rheumatology, at the Rheumatology department of the main hospital where I live.

They did various tests and blood tests and examined my joints and x-rayed my left ankle, which was where the main problem seemed to be and after about an hour or so I was taken into a room and the consultant told me that I'd got rheumatoid arthritis. He said my rheumatoid factor, which is something they measure, was off the scale, it was 20,000 and something, they'd never seen one so high and all this, it meant nothing to me, I hadn't got a clue, I thought arthritis was something grannies got when they were in their eighties.  

He explained to me that women get it three times more than men, or were more likely to, and it can start in babies as juvenile rheumatoid arthritis anything from the age of nine months onwards, and it's not uncommon for men to get it between forty and fifty.

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 although this is unusal (see 'Regular monitoring and other diagnostic tests').

 

Had many different treatment and tests in hospital to diagnose juvenile chronic arthritis.

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Had many different treatment and tests in hospital to diagnose juvenile chronic arthritis.

Age at interview: 37
Sex: Female
Age at diagnosis: 19
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But while I was in they took various blood tests and things and they thought they could find the answer from my liver, so they did a liver biopsy, which again was, for me, it was, I was petrified basically. And they gave me something to calm me down and then I was fine.

Yes they did admit me straight into hospital. It was actually a cardiologist that did admit me, and he you know, he only sort a working knowledge really of arthritis or rheumatoid, but their, their initial sort of feeling was to sort of aspirate the knee and that was agony and nobody sort of really prepared me for it, they didn't tell me what they were going to do, they just did it and the needle went under the knee cap, which was very nervy and there was no sort of local anaesthetic given or anything like that.

I mean I don't know what the procedure is now and they did test me as well I didn't know why, but they took sort of a vaginal swab and the doctor told me later that they'll have been, I think it was gonorrhoea he said that they were testing me for, because that produces joint problems but he said they would never have offended you and told you that that's what they were testing you for [laughs]. So they do test you for various things before they come to that conclusion [laughs].

And were the other tests sort of blood tests or did you have other things?

Yeah blood tests and what they were doing I think the year prior, no not the year, yes the year prior I'd been, I'd been only to Majorca but I'd been asked did I drink milk and things like that, so as a result of being abroad and drinking milk and they were possibly testing me for like tropical diseases from Majorca [laughter] but they did send it away to the tropical diseases laboratory in London in case there was anything there. I mean I did feel in the beginning that they ruled out everything that they possibly could, they didn't sort of leave any stone unturned.

But in the beginning they did diagnose it as juvenile rheumatoid arthritis, Still's disease they told me, they did test me for various things because they did suspect lupus at one point. But they were all ruled out and they stuck to the diagnosis of chronic juvenile arthritis and what they told me in the beginning was that it would probably burn itself out within 18 months, because most cases do of the juvenile type of arthritis.

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 or another inflammatory condition. 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.

 

Was initially told she had psoriatic arthritis but she read about it and thought it was...

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Was initially told she had psoriatic arthritis but she read about it and thought it was...

Age at interview: 29
Sex: Female
Age at diagnosis: 25
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My doctor, who wasn't my normal doctor he was just a practice doctor just said to me take Ibufen and go away basically. And that was in the January and then by May my knees were swelling, my hands were really swollen and I could hardly walk on the bottom of my feet. So I went back to my GP, but my normal doctor, and she done blood tests and all the tests that you could do and she was pretty sure it was some sort of arthritis but she didn't know what it was. And where I work you get private health care so I decided to go and see a private specialist and when I got to see him, when I was 15 I had, I'd don't' know if I'm going to say this right but it's psoriatic arthritis and he said it was that.

And so I started reading and my joints were not the same as psoriatic arthritis. And I got it in my head that I thought it was RA and I kept saying it to this doctor and he kept saying 'No, it's not that'. And he said, 'We've done a blood test and it says negative'. But then when I was reading it was saying that your blood can be negative for 3 years. So in the end I went back to my original doctor and I said what I thought and she was the one who said the mineral clinic are a good hospital and she referred me to them.

So that was, I first noticed I had problems in January '99 and I didn't get referred to them until July 2000, so I'd had a year and a half.

Well, like I said, the first GP wasn't understanding but then when I seen my second GP and this was my proper GP and she suggested, I suggested to her what I was going to do and she said that she thought it was a good idea. But it was basically me going to her and saying, because they couldn't find nothing wrong. But I just thought, they were pretty sure it some sort of arthritis so I thought if I go to someone who actually specialises in that then they might be able to find out what the problem was.

And what made you change from that consultant to an NHS one?

Because he kept saying it was psoriatic and I kept saying it wasn't. And he wouldn't do any more tests or look into it further, he just stuck to his guns on it and I just, I just had that feeling it wasn't what he was saying. So then I went back to my GP and I told her what I thought and she said, that's when she referred me to the clinic I'm at now because she said they were very good with people with arthritis.

And did you have to wait for that a long time?

No. I think I was possibly, may, it might have been about a month to 6 weeks that I had to wait but as soon as I went to see the consultant within a month I knew what was the matter.

 

After an initial diagnosis and flare 11 years ago, she was re-diagnosed and told it could be lupus.

After an initial diagnosis and flare 11 years ago, she was re-diagnosed and told it could be lupus.

Age at interview: 42
Sex: Female
Age at diagnosis: 29
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During the second flare up after I'd had the break for 11 years, again there was slight confusion over the diagnosis at that stage because I'd had various blood tests and, and to me, I, you know, it just seemed exactly the same as I'd have before. I knew at that stage it was rheumatoid arthritis but I had a phone call one morning from a doctor from my surgery saying 'You've actually got lupus' and it, I mean, it has a longer name than that but it's commonly known as lupus. She said 'the blood test results show you have Lupus.' And again I was quite shocked at that because I didn't know what lupus was. 

And so I said to her 'Well, what's the outcome?' or something, I said something like that and she said 'Do you mean the survival rate?' And I, and suddenly I thought 'Gosh! I didn't know we were talking about a condition that, you know, is potentially fatal'. And she said 'Oh no it very good, you know, it's very rare for anybody to have major problems with it'. And she, you know, she tried to be reassuring.

She said 'Oh most people, you know, don't have it in a severe form' and you know we had a conversation about that and I thought 'Oh well at least it's been diagnosed'. And then, but it preyed on my mind that, you know, it could be, become a much more serious condition and, you know, we went to see her and talk it through and I thought, you know, 'This is a completely new thing that I've not faced before'. 

But then in the end it was decided that when I saw the consultant. He said 'No I don't think it is that, there is an overlap, some of the symptoms can be very similar but you don't have enough of the symptoms for it to be that'. And you know, he felt sure that it was just rheumatoid arthritis but, you know, at the time that just seemed another sort of upheaval.  

And quite a shock over the phone to be told?

Yes it was, yes. Absolutely, yes, something I'd never heard of that could even be worse than, you know, the condition I, in a way, I think when I saw the consultant I almost felt relieved that it was only rheumatoid arthritis, bad as it was. You know, I felt 'Well this is something I've dealt with before and got through'. So, you know, it was in a really bad stage at that stage, but I thought, you know, it will settle down again and go away. So, you know, it was almost a relief at that stage to think it was rheumatoid arthritis and not this other condition.

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 bed rest and immobilisation of joints is know not to be best practice now and keeping joints moving is advised where possible. In fact exercise, appropriately paced, is a useful addition to the treatment of RA.

 

Was taken to hospital by ambulance and after 5 days of tests was found to have RA.

Was taken to hospital by ambulance and after 5 days of tests was found to have RA.

Age at interview: 52
Sex: Female
Age at diagnosis: 47
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Well it went back to six years ago an ordinary night I went to bed about 10.30 and about 2.30 in the morning I woke up and felt that I couldn't move, because I was in so much pain. I managed to get myself out of bed and ring for a friend, she came round and she called an ambulance for me. Got me to the local hospital and they admitted me, they didn't know what was wrong with me they were quite worried about it because they thought I had a stroke at first but that came back negative but they kept me in there for five days, did various tests and it came back as, not rheumatoid arthritis, but a different form of arthritis, which was a shock to me.  

But I came, after being in hospital for a about a week, I came home, and I just carried on as normal, and I realised that I wasn't normal, my body wasn't normal and I first realised it when I tried to open a can and I couldn't move me wrist and I knew that something wasn't right then. So then I got back in touch with the hospital, asked to see the specialist and, he did various tests while I was in hospital but he also did more when I went back to see him. And he said that I had rheumatoid arthritis and when I was admitted the previous fortnight it had gone septic and had gone right through my body.

 

Felt a fraud with no visible symptoms but went into hospital for rest then finally asked what was...

Felt a fraud with no visible symptoms but went into hospital for rest then finally asked what was...

Age at interview: 52
Sex: Female
Age at diagnosis: 28
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So he then said, 'I think I'll send you to a, a rheumatologist'. So I saw the lovely consultant at the local hospital and felt a complete fraud because you can't see anything. So I thought 'Well what am I doing here, I can't show him a cut finger' and I was there for about two hours and I said, 'I just feel a complete fraud here'.  

So he said, 'My dear, you are not a fraud and I want you in hospital within a week'. The nurses went on strike that particular year so it was actually 12 weeks before I got in to the local hospital and I was there for about 3 weeks, and complete bed rest. I wasn't allowed to do anything for myself. I did insist on going to the toilet [laugh] 'cos I thought I'm not using those horrible bedpans. So they allowed me, I think it was a maximum of three visits to the bathroom a day, but I couldn't do anything else for myself at all.  

Yes I was, yes and it took quite a long time to actually ask what it was that was wrong as I know that the specialist said, 'Oh I wondered when you'd get round to asking me exactly what it was you'd got'. You know, I just sort of sat there and I think it was in hospital that I finally asked him, 'Well, what is it then, that's wrong?'  

So not at your first consultation?

No, no, I guess I just tried to ignore it. Again you couldn't see it, so therefore as far as I was concerned, there wasn't really anything wrong, just a few aches and pains and the fact that I couldn't pick a cup of tea up anymore.

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.

 

Rheumatologist told her the three likely outcomes of having RA.

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Rheumatologist told her the three likely outcomes of having RA.

Age at interview: 37
Sex: Female
Age at diagnosis: 19
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But I was told as well that there was, there was a sort of an even split it was 30/30/30 that some people got rheumatoid arthritis and it never went away, some would get it and it would come back, it would sort of be an on and off thing, and then there are a group of people that would get one burst of it and then they'd be fine.

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').

The British Society for Rheumatology has regularly updated guidance on the diagnosis and treatment of RA. This also includes information for GP’s on when a person should be referred to a specialist and initial tests to conduct.

Last reviewed August 2016.

Last updated August 2016.

 

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