Rheumatoid Arthritis
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 for RA'), 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.
Makes sure she has regular blood monitoring at the hospital.
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.
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 didn't 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...
Has monthly blood monitoring, but it is difficult to get a sample. She likes to know and...
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.
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 weren't 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.
Understands what her blood monitoring is for; having a record card helps.
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 inflammatory processes in your joints and it's very comforting if you're taking you know, lots of drugs and your ESR is going down 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.
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.
Abnormal blood results led to a endoscopy and a colonoscopy.
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?
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...
He finds it interesting to see the progression of the RA by having regular x-rays of his hands...
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.
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...
Was not being regularly monitored by her rheumatologist so changed hospitals. X-rays taken by...
So I went through one pretty soon after and gave her a phone call and I thought here we go, something's 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, something's not right. So I spoke to a friend and she said well she said 'there's 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 he's, I've been on the majority of what I would say the secondary drugs and he said right we're 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, he's 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 she's 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 we're 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 he's serious.
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 woman's shoulder and foot, another's back and assess one man's 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.
Describes having an MRI scan and how she dealt with her claustrophobia.
Describes having an MRI scan and how she dealt with her claustrophobia.
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.
Ultrasound imaging was used to identify the damage to one man's 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.
Last reviewed August 2016.
Last updated August 2016.
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