Regular monitoring of rheumatoid arthritis and other diagnostic tests

Because some of the drugs you might be taking for rheumatoid arthritis may affect the immune system or may produce side effects, you need careful monitoring. Regular monitoring is done in various ways. Visits to the rheumatologist and other medical staff, (see Outpatient clinics), body scanning, eg x-rays, and blood and urine monitoring are important, for example, to detect possible adverse effects of medication. Other diagnostic tests are sometimes needed to investigate problems, eg bone density scan, Magnetic Resonance Imaging (MRI), endoscopy etc.

Many people were either taking some disease modifying anti-rheumatic drug (DMARD) or anti-TNF drugs or B-cell therapy rituximab and needed regular blood, and in some cases, urine tests. Tests were most often done at the GP surgery, but some people went to a local hospital. People had had regular blood tests whilst starting a new medication or if any abnormalities had been noticed; most people had monthly tests. Two respondents, one on an anti-TNF drug and the other, on rituximab had blood tests done every two weeks. A few, who were on non-steroidal anti-inflammatory drugs (NSAIDs) or steroids, had less frequent blood tests, every 2-3 months.

Most people were happy to have this type of monitoring as it assured them that any problems would be identified early. However, one woman, who had blood tests only before an appointment with the rheumatologist, recognised that was risky.

Makes sure she has regular blood monitoring at the hospital.

Age at interview 40

Gender Female

Age at diagnosis 2

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You have to go for regular blood tests and I was paranoid about, that I go for my blood test on time because I’m thinking if there is any sign of it affecting me I want to know as soon as poss. But some people, my friend goes as and when she remembers, I’m in my diary, at the beginning month I’m at my doctors for my blood tests.

And have you ever had any problems reported?

No, no, I’ve been on it for two or three years now so there’s been, they haven’t contacted me, I see the doctor quite regular, so it’s not affecting me. ‘Cos it shows, it can damage your liver so they check it regularly to make sure it’s not showing liver damage and I make sure I go. And I’ve actually got quite difficult veins as well and they won’t do me, they won’t do me at the doctors surgery I have to go to the hospital and I make sure I do go to the hospital and have it done.

It’s in my little diary – star date blood test which perhaps when I was younger I might not have done that I’d have thought ‘oh what the hell a blood test’, but I’ve become much more responsible about my arthritis as I’ve got older. Because I’ve had it so long you become blas’, and you think ‘ooh’ but as I’ve got older I’ve thought Oh God this is, you know, this is a thing to be careful about you know. I mean I am aware of living life to the full sort of thing and trying to do, making the most, don’t put off today, you know I live for the moment which can be bad really but can be good.

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A number of people who had lived with RA for a long time found that the condition of their veins meant that nurses, phlebotomists and doctors had difficulty taking blood samples and so some attended the hospital rather than their GP surgery. Having regular tests was sometimes inconvenient, especially in hospital clinics with long waits, and if people were away from home. A few people didnt like needles but some had got used to them over time.

Has monthly blood monitoring, but it is difficult to get a sample. She likes to know and…

Age at interview 43

Gender Female

Age at diagnosis 24

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Blood tests monitoring, I have once a month for the methotrexate. Difficulty is now, that’s why the doctor’s coming today is it’s not easy to get blood from me now, because I’ve been giving it so many times. So it’s, I can’t, the nurse, the district nurse can’t do it so I have to have one of the doc, practice doctors, and they, they’re having a problem now. Unfortunately was it last month, I had about, I went for a blood test six times until they managed to get a sufficient sample, which did, has made me a little bit phobic of needles now. I never was but that and that’s not going to get any better because I’ve really only got one good sort of vein and they are lucky if they can find it. That’s one of the worse side effects, I would say of it all now, I hate needles.

And what, what, did you understand what they’re monitoring for?
[cough] Yeah ‘cos I asked them again. I’m always as I say I’m never frightened to ask. I have a booklet where I record my results, which they give me because I take that to my consultant and I’m always, I always want to know why, well you know, this red blood counts down does that matter and they’ll show you the, the range of acceptability and ‘well that’s not, we’re not worried about that’ or if my inflammation is, is high and ESR they measure me I know, I think well that makes sense because I have been feeling very stiff lately. So I do, I understand my results and they always tell me about them so and I keep that and so I can discuss it with the doctor when I see him.

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Most people understood what the blood tests were for: to ensure the liver and kidneys were functioning properly; to check the red blood cell/haemoglobin levels to test for anaemia; to ensure there werent excessive white blood cells and to measure the Erythrocyte Sedimentation Rate (ESR) and C-reactive protein (CRP) which indicate the level of inflammation and disease activity. Several people commented that the ESR value reflected how they felt.

If results were abnormal, patients were notified promptly and asked to stop taking the particular medication likely to be causing the problem and have further tests. Two people were found to have anaemia and were prescribed iron tablets. People had record charts of their blood results and were responsible for taking them to both the GP and rheumatologist as part of Shared Care arrangements.

Understands what her blood monitoring is for; having a record card helps.

Age at interview 63

Gender Female

Age at diagnosis 36

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Yeah, well the nurse fills it in when I go for my blood test, she, she fills it all in and she, occasionally there are things they’re not happy about on it, when the results come back and I get a phone call from the surgery saying either theres been some mistake on the blood test, but were not happy about some of the results, will you come back and have a retest. And that’s good, I like, you feel somebody’s looking out for you and they are checking the results and you feel another boost to your confidence in the system. Which I think you do need to feel that when you’re taking drugs which have got nasty side-effects. And I think it’s good that you feel involved and I liked having, I like having the card. Perhaps it’s just my personality, but I like to have it with me;
And have you learnt what the different things are?

Yes, some of the things I have. Some of them are completely meaningless but yeah I like to know what my haemoglobin is, you know, if I’m anaemic or not, ‘cos that is one of the problems with a rheumatoid, you are often a bit anaemic, and I like to know what my erythrocyte sedimentation rate is, that’s good. I like to know what that is and my CRP and oh yeah, I like looking at it, and it’s there to ask the nurse or the doctor if you ever want to. It’s a very good idea I think having that;
And it doesn’t worry you if things go up and down and ‘?
No. But maybe that’s just me [laugh];
So what do you understand by the ESR?

I understand that that is the level of inflammatory activity that is present in my body. Of course, it’s not always just your joints; people do have a high ESR even if they’re not rheumatoids, but naturally if you’re a rheumatoid, it’s relative to your inflammator; processes in your joints and it’s very comforting if you’re taking you know, lots of drugs and your ESR is going dow; to look at it on the card and indeed, if you’re not feeling brilliant, and you feel very jointy and look and see your ESR is going up, you think, oh well perhaps I will go and see the GP, and maybe I need a little bit of an extra something or other just to and I think it’s good to be involved.

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Occasionally, people may need further investigations if problems occur such as abnormal blood results, bleeding or if an ulcer is suspected. An endoscopy may be performed a small camera on a long tube is passed down the gullet into the stomach (also called gastroscopy), or similarly colonoscopy, where a camera is passed on a tube though the rectum into the bowel. These can identify problems with the digestive system. Three people had experienced one or both of these procedures. Two were reassured that there were no significant problems, but in one man bacteria (Helicobacter) were found which were causing his stomach problems.

Abnormal blood results led to a endoscopy and a colonoscopy.

Age at interview 47

Gender Female

Age at diagnosis 45

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Well she phoned [cough] my own GP phoned me up and said, ‘You must come back. There was an abnormal blood test and she didn’t know what it was, whether it was to do with rheumatol, rheumatology or not. So I had to go and have an endoscopy. And a colonoscopy all on the same day. And for the colonoscopy you had to take this terrible medicine the day before and be by a toilet [laughs] all day.

So I still did the child minding and it completely washes you out. And so, you’ve got absolutely nothing in your bowel, what, whatsoever. And and then I went to hospital the next day and, having had nothing to eat and they give you Pethadin so you don’t really feel it and because I was having both ends, they give you more of it. So I didn’t feel anything. So they looked down the throat and up my other end and that’s the only time I was aware, I could feel this stuff poking about.

It took about half an hour and there was absolutely nothing, they couldn’t find one thing wrong with me. So they put it down to anaemia, because of the arthritis. Which though it didn’t, it proved that there was nothing wrong inside it meant it was, when they gave me tablets and an anti-inflammatory actually, they work don’t they badly on your stomach if you’re that susceptible for indigestion or ulcers, I remember so, when they gave me anti-inflammatory they knew that wouldn’t be enough, effect and it meant when they gave me the sulfasalazine they knew that one side effect I wouldn’t have would be anything wrong with my stomach. And as I never suffer from indigestion either, that was all right.
And how quickly did they organise that?

Really quickly. I’m, I’m sure I said, ‘I’m going on holiday in 3 weeks,’ and they said, ‘We want to do it before you go. Because they were worried, so worried about the blood count. So I had it in two weeks which, you know, NHS that’s pretty good going, isn’t it?

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X-rays show bone changes and rheumatologists often requested x-rays of hands and feet to check if the disease had progressed over time. People who were having problems with a particular joint also had x-rays and they were commonly taken before and after joint surgery. Most people did not find having x-rays taken a problem although two women worried that they had been exposed to a lot of radiation over the years.

He finds it interesting to see the progression of the RA by having regular x-rays of his hands…

Age at interview 42

Gender Male

Age at diagnosis 17

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Yeah, certainly X-rays. I don’t think I’ve had an ultrasound but I’ve certainly relatively regularly have X-rays just as a means to find out where the sort of the feet and the hands are, how they’re really sort of progressing or sort of deteriorating really perhaps in a way, probably once a year perhaps. Probably now even less than that because I’m only having the six monthly inspections so probably perhaps go a couple of years before you, you have them. But they do, they do keep monitoring that side of things just to see how they are.
Does it bother you having sort of that regular X-rays, that many X-rays?

Not really because it’s interesting obviously to, to see the state of, you know, what, what is actually obviously going on. I mean you don’t, you can’t really feel the deterioration that you can see obviously on the x-rays and obviously you know that things are hurting but you can’t actually see the way that things are changing and the joint’s deteriorating that much so it is interesting really in that respect just to, physically see what’s going on. It may not be quite so nice to know what’s going on but you do actually, you know, see and can understand a little bit more.

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X-rays taken as part of a rheumatology clinic visit often meant additional waiting as the rheumatologist wanted to see the new x-rays.

One woman was dissatisfied with the service from one hospital as they did not regularly carry out blood tests or x-rays. When she moved to another hospital her joint x-rays showed deterioration requiring several joint replacements.

Was not being regularly monitored by her rheumatologist so changed hospitals. X-rays taken by…

Age at interview 38

Gender Female

Age at diagnosis 21

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The hospital wasn’t right, it was the things that they were saying, I knew what tests I should be having, not what type of tests, but I knew you were going to have regular tests, there was blood tests and bits and pieces and X-rays just the general MOT of what was going on with the body and this just wasn’t happening and I was going through such regular flare ups, and I thought somethings, it was as though there was a flow to it and I said to the specialist one time theres something not right, I don’t normally have them with this regularity or this pattern that was developing and she said ‘Well we don’t need to do anything because we can see the damage is happening by just looking at your hands’, and I thought that’s a bit odd, because normally they would throw you into the X-rays pretty quick and there was no blood tests done but she said well the next time you go through one of these well have you in and well assess what’s going on.

So I went through one pretty soon after and gave her a phone call and I thought here we go, somethings going to happen and they said, they just made an appointment for me to come in and see her within, it was I think a couple of months, and I thought no I’m not happy with this, somethings not right. So I spoke to a friend and she said well she said ‘theres a good specialist not very far away, get yourself into see him.

So I went across to see this chap and I thought, ‘Oh you know, and it was just the guilt of having to move specialists again. Anyway I saw him and hes, I’ve been on the majority of what I would say the secondary drugs and he said right were going to go and X-ray all your joints and see what’s going on and he said you’ve got a choice of a couple of drugs really and one was the steroids and one was, I can’t remember the second one, and so I went off, had the x-rays, came back and he took me into this little room and the nurse was there, shoved up these X-rays and I thought well that’s not me, hes got the wrong X-rays here.

I could see the sort of damage going on with the hip area and stuff, and I thought, no no that’s not me and I said to the sister I said ‘Are you sure these are the right x-rays? It doesn’t look like my X-rays’, she said ‘Yes’, and I said ‘No, they’re not, they’re not mine, and I was waiting for somebody to say sort of say it’s a joke or something and she looked at me as though to say shes not getting this, and he came in and he said, ‘Well and he sat down and he was really really nice about it, and he said ‘Right were going to have to go through and replace a lot here, shoulders, elbows, hips, knees and wrists, and I’m thinking ‘Na’, [laughs] I thought I know I’m in a lot of pain and I know I can’t really move around a great deal at the moment but and I thought no hes serious.

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Bone mineral density (BMD) scans may be performed to assess bone strength, particularly for people on long-term corticosteroids as these affect calcium absorption, bone growth and maintenance, potentially causing osteoporosis. Several people had been scanned and found these tests straightforward, not unpleasant, and enabled them to take action if necessary. If bones are weak (osteoporotic) increasing calcium intake and weight bearing exercise can help. (See Steroid tablets, injections and intravenous pulses and Diet and food supplements.)

Magnetic Resonance Imaging (MRI) can identify soft tissue problems as well as bone changes. This was used to examine one womans shoulder and foot, anothers back and assess one mans stomach problems. One man had an emergency MRI after developing breathing problems which the doctors could then diagnose as double pneumonia connected with his RA.

Most people felt claustrophobic in the MRI machine and did not like the experience but appreciated it was a very good way of diagnosing a problem. A woman who was awaiting an MRI scan was worried her metal elbow replacements might be magnetic and wanted to alert the operator beforehand.

She felt claustrophobic having an MRI scan and her knees hurt.

Age at interview 37

Gender Female

Age at diagnosis 19

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What it was that after my second hip replacement I developed a problem, I think it was the sciatic nerve and the consultant didn’t say exactly what he was looking for but I think with my symptoms I wasn’t describing like a normal sort of pattern, so I don’t know what else he thought was going on, I didn’t ask him and he didn’t say cos I was thinking ‘Oh does he think it’s cancer or something?’ ‘cos these things come into your mind, so he sent me for the MRI scan, but what did happen there was because I couldn’t lock my knees straight they did have to give me like a little sort of foam triangle to support my knees whilst I was in, so that they were at a bent angle so that I could keep still and I was very claustrophobic.

I found it very distressing really, ‘cos I opened my eyes as I was being pushed in and noticed how close it was to my face and I am claustrophobic anyway so at one point I really, I nearly lost it but I didn’t and when you were being pushed in they told you you were going to be in for 20 minutes, but it was 40 and I think that was a psychological thing, so you don’t think you’re going in for as long and what I did find as well was that they, I did get really bad pain in my knees because what they said to me was the magnet has probably heated up the hip replacements and that’s like sending like vibration or whatever down the bone, so you know it was very painful, but I did manage to keep still but it’s not something that I’d like to repeat if I don’t have to ever. I would do it again if I had to, but it wasn’t pleasant.
And did it discover anything?
Not really no, it maybe confirmed what he thought about my back, that it was my sciatic nerve but there was nothing else there, but that was probably a good thing I think.

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Describes having an MRI scan and how she dealt with her claustrophobia.

Age at interview 45

Gender Female

Age at diagnosis 39

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I got a cancellation very quickly. And I had to phone to go through a medical questionnaire on the phone to validate the appointment that A) I could make the time allotted and all the rest. And I remember laughing and joking saying, ‘Well I don’t know what to expect. And they said, ‘Well let’s go through this questionnaire and then we’ll talk about it. I said, ‘Well can I eat? Can I drive? you know and this sort of thing?’ She said, ‘Oh yeah, yeah, yeah, you’re arms won’t fall off or drop off.

And I went off to have my scans and I got there at five minutes before my appointment so I then filled out a medical questionnaire confirming what went through signed the disclaimer and all the rest and I was escorted, I went to sit down and I was dragged straight in and it’s really funny because they had this most gorgeous mural on the wall which was a very relaxing ocean sort of scenic view, which I totally missed and looked straight at this machine and I went, ‘I’m not getting in that’, [laughing] which was my first reaction, which was a bit scary. And she said, ‘What’s the problem with it’? And I said, ‘I’m claustrophobic’ and she said, I said, ‘I drive with the windows open’ and she said, ‘Really?’ and I went, ‘Really, I’m claustrophobic. So anyway, she said, ‘Well just try it.

And I got into the machine and I was given a radio mike so I had constant, we were in constant contact, and the only thing that I wasn’t aware of because of having the shoulders done I had to be right in the centre of the machine and I was really quite scared. I was also, because of the magnetic thing, I’m thinking, ‘Oh my God, will all my fillings come out’, and things like this. So it was the first question I asked and she said, ‘No, no, trust me. It’s on your, we’re turning that bit off. It’s on your shoulders’, you know and I’ve I’d already said I’ve got no pins or plates in me or whatever, so, that was fine. But I wasn’t geared for the noise and I just, she said, ‘Just find someway to relax’, and this is the middle of August I went.

So I started off doing a Christmas shopping list to get myself through it because I was really, really feeling quite claustrophobic and I was like forcing myself to relax. And I can remember feeling I was getting a bit panicky, I was almost having an anxiety attack at one point and I’m thinking, ‘No, no go on to thinking of everyone’s name beginning with A’, and then I went on to B and all the rest of it. Anyway I’d been in this machine for about 45, 50 minutes and I didn’t even realise. All I was focusing on was trying to relax, trying not to think about the fact that I could see the, the thing and you know I couldn’t try and sit up.

I then got dressed and I wasn’t allowed to leave until they’d made me tea and had tea and biscuits. And ‘Are you all right? Are you comfortable to drive home, you’re not” and they you know, they really are, before, during and afterwards was really, really good. And I was well impressed. Not 100% sure I’d want to do it, knees, ankles, yeah I’ll think about going back in there, hmm, I’m not sure because now that I’ve done that it was quite uncomfortable.

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Ultrasound imaging was used to identify the damage to one mans ankle. One 76 year old man reported visiting the respiratory department for lung testing because he was taking methotrexate. Another man with rapid heart palpitations when his RA was in flare had ECG (electrocardiogram) monitoring over 24 hours, but this showed no specific problem.