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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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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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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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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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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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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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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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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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.