The Patient Journey - Initial Hospital Consultation
This article has been developed to help patients to make the most of their initial hospital consultation. Your GP has referred you to the hospital as they suspect that you may have rheumatoid arthritis (RA) though this may not always be the case. Usually initial consultations are between 20 and 30 minutes long. The hospital will have sent you written appointment details and there may be other instructions with this including bringing a urine specimen. It may also be helpful for you to come with a relative or friend. It is important that you provide the specialist with information about your medical history and medications. Here are some of the common questions asked, to help you to prepare for your consultation:
- How long have you had joint symptoms?
- Which joints have been painful?
- Which joints have been swollen?
- Do you have morning stiffness and if so for how long?
- Have you felt generally unwell, had fevers or lost weight?
- Have you noticed any skin nodules or rashes?
- What medication have you been given?
- Have you had any benefit or side effects from your medication?
- Has your arthritis affected your ability to work?
- How has your life been affected by the arthritis?
- Have you had sleep disturbance or developed depression?
- Is there a family history of rheumatoid arthritis?
Arriving at the Clinic:
Parking in hospitals can be very difficult and you need to plan your journey. With booking systems it is important to arrive promptly. When you arrive at the clinic you will usually need to make yourself known to the Receptionist who should inform you how long the waiting time is. The clinic nurse may take some baseline tests such as blood pressure, height, weight, urine analysis etc. In some clinics you may also be asked to fill in a health questionnaire.
Some patients are apprehensive about meeting the consultant but remember they have your best interests at heart. One of the most important roles of the consultation is to determine the diagnosis. This may not always be clear at the onset of disease and a GP may not have been sure enough to make the diagnosis.
The consultant will ask you a number of questions about the onset, distribution and severity of your joint symptoms whether there is associated stiffness or swelling. They will ask if you have more generalised symptoms such as fatigue, fever, weight loss, skin rashes or nodules. They will also inquire about what medication the GP has prescribed and whether it has been beneficial or had any side effects. You should also mention any over-the-counter medications or complimentary therapies you may have tried.
The consultant may also ask you about what impact the arthritis has had on your quality of life including your work, your recreational activities and your interaction with family and friends. Arthritis can lead to poor sleep and depression and your consultant should be made aware of this but you may find that you wish to discuss this in more detail when you see the specialist nurse (see later).
The consultant will also ask you about your previous illnesses, your social history including occupation, smoking habits and alcohol intake and any relevant family history.
At this stage the consultant will wish to examine you. You should be offered a cubicle or examination room which offers privacy. At your first consultation you will have a thorough physical examination and you should be requested to undress down to your underwear. You may wish to request help with undressing / dressing from the clinic nurse. A carer or chaperone can be present at your request. If there are other doctors or students present he should request your consent for them to be present during the examination. The doctor should examine all your joints and may also examine your neck and spine. They will be looking for tenderness, joint swelling and examining range of movements. Some patients may find the examination painful. They should then perform a more general examination which could include examination of your heart, chest and abdomen, the skin and the nervous system. In some cases posture and gait will be examined.
The Consultant may provide you with a diagnosis based on your history and examination but often further investigations may be required to confirm the diagnosis. These could include blood tests, x-rays and ultrasound.**
Blood tests may include a full blood count, measures of inflammatory activity (ESR and CRP), rheumatoid factor, anti-CCP antibodies and routine biochemistry. X-rays usually include hands and feet, looking for early joint erosions and a chest x-ray for any underlying chest problems. Occasionally more sophisticated tests such as CT, MRI Scan and ultrasound will be arranged to be done at a later date. The doctor should tell you the results of the tests either by phone or letter but it may be several weeks before the results are available.
Here are some commonly requested blood tests and x-rays:
- Full blood count (FBC). Rheumatoid arthritis patients may have a slight anaemia or a slightly raised white cell count and platelet count.
- Erythrocyte Sedimentation Rate (ESR). This is a measurement of inflammation and is usually raised in rheumatoid arthritis.
- C-Reactive Protein (CRP). Another measure of inflammation seen in rheumatoid arthritis.
- Urea and Electrolytes (U&Es) – Usually includes Creatinine. This is a measure of kidney function.
- Liver Function Tests (LFTs) – Mild abnormalities can occur in rheumatoid but a number of medications used to treat rheumatoid can cause abnormalities in the liver function tests.
- Rheumatoid Factor – This is known as an autoantibody which is present in about 60-70% of patients with rheumatoid arthritis.
- Other auto-antibodies are sometimes checked including anti nuclear antibodies (ANA) and anti-CCP antibodies (antibodies against cyclic citrullinated protein).
- Hands and feet - These are usually x-rayed at the first visit. These x-rays are looking for joint erosions, which identify early joint damage in rheumatoid arthritis. If these are present you should be considered for intensive disease modifying therapy.
- Chest x-ray – This is often done at your first visit mainly as a “base-line” investigation. Very occasionally rheumatoid arthritis can affect the lungs causing fluid around the lungs (pleural effusion) or inflammation of the lungs (fibrosing alveolitis). One of the commonly used medications for RA, methotrexate, can occasionally cause lung inflammation as well.
- X-rays of other joints: It is not routine practice for all symptomatic joints to be x-rayed. However, if there has been an increase in joint symptoms or deterioration of joint function then x-rays of the particular joint will be performed.
MRI and Ultrasound
- These imaging tests may be arranged after your initial consultation to determine the extent of inflammation (synovitis) and damage (erosions) inside the joints. This is usually done in the hands and will help to determine your treatment.
Treatment of your RA will depend on the severity of your arthritis and nowadays you will be involved in discussions about the best treatment options. You should be provided with information about the drugs selected and if necessary some time to reach a decision. Your treatment will be managed not just by the consultant but also by the multi-disciplinary team which will include rheumatology nurses, physiotherapists and occupational therapists and podiatrists. You should be kept informed and consulted on all treatment decisions.
It is likely that you would have already been commenced on an anti inflammatory medication (otherwise known as NSAIDs) such as ibuprofen and naproxen. These drugs help reduce pain, swelling and stiffness of joints but are purely symptomatic and do not affect the course of the disease. They can commonly cause indigestion and should be avoided if you have a history of stomach ulceration. If you do get indigestion with the medication your doctors may prescribe a gastro protective agent such as omeprazole. However, NSAIDs can cause fluid retention, a rise in blood pressure and more recently have been associated with a slight increase in the risk of heart attacks. Though this risk is small these drugs should be used with caution in patients who have the history of cardiac problems. Your consultant should offer you further advice.
Modern treatment of RA involves early control of inflammatory activity in order to prevent joint damage (erosions). This is achieved by the early use of disease modifying drugs, known as DMARDs (see list below) the most common of which are methotrexate and sulfasalazine. Others include hydroxychloroquine, azathioprine, leflunomide, and now less commonly gold, ciclosporin and penicillamine. Occasionally they may be used in combination (such as methotrexate, sulfasalazine and hydroxychloroquine or methotrexate and leflunomide). You should be provided with ARUK (Arthritis Research UK) information leaflets on the chosen medications which will include warnings of potential side effects. These medicines require regular blood monitoring and you should be provided with a monitoring booklet particularly with methotrexate. As a rule they are slow acting, taking 2-3 months to work.
Oral steroids (prednisolone) continue to be commonly used in early rheumatoid arthritis. In active disease and for those with early erosions, low dose prednisolone (prednisolone 7.5mgs a day) has been shown to reduce the progression of erosions and may be used for up to a year or until the disease comes under control with your DMARD therapy. Some units instead use monthly intra-muscular injections of depo-medrone 120mgs. Short courses of reducing doses of prednisolone are also used to treat acute flares of disease. When used in this way steroids rarely cause significant side effects but caution should be exercised in people with high blood pressure or diabetes.
Other treatments that may be offered include joint aspiration and steroid injections particularly for acutely painful and swollen joints and in some centres multiple joint injections may be advised.
Biological therapies such as anti TNF drugs are not currently prescribed at onset of disease.
Other treatments which may be discussed include use of wrist splints and other orthotics; physiotherapy to improve joint function and muscle strength; podiatry if you have pain or deformity in your feet and occupational therapy to assess the impact of the arthritis on your work and home life (called ‘Assessment of Daily Living’).
Pre-existing Conditions (Co-morbidities):
Smokers are more likely to have more severe rheumatoid arthritis with greater risk of erosions and should therefore try and stop smoking.
If you suffer from any pre-existing condition such as high blood pressure, heart disease, diabetes, kidney impairment, liver problems or lung conditions it is important that your consultant is informed of this. These conditions may affect the course of your rheumatoid arthritis and more importantly may influence the medication chosen to treat your arthritis e.g. Prednisolone may be used with caution if you have high blood pressure or diabetes. Methotrexate side effects can be increased if you have kidney impairment or may be contra-indicated if you have got significant liver disease. In women if there is any chance that you could become pregnant it is important if you are being commenced on methotrexate that you take contraception as this drug could potentially affect the baby. Sulphasalazine, hydroxychloroquine, azathioprine and prednisolone are safe in pregnancy.
Patients will require close assessment when they first start medication for rheumatoid arthritis to ensure that side effects are avoided or minimised and that the medication is effective in controlling the arthritis. You will be requested to undergo some regular blood tests and it is an important responsibility of yours to ensure you undertake these. The results may need to be recorded in a monitoring booklet.
In most units this initial follow up will be carried out by the rheumatology nurse or a staff grade doctor who, if necessary can discuss your condition with the consultant. They will assess the severity and extent of your arthritis with a joint score and blood tests which determine disease activity score (DAS) or any side-effects. The aim is for you to achieve clinical remission or low disease activity which may necessitate an increase in the dose of your DMARD or the addition of further DMARDS.
You may be offered a helpline number to the Unit if you run into any problems either from a worsening of your RA or side-effects of the medication. The consultant may also need to review you after a certain period of time to check on your progress. This can be anything between 3-monthly to once a year.
It is important that patients are provided with as much information about their disease as possible; the way it is treated and how they can best cope with their condition. Unfortunately at the initial consultation only essential information will be provided and it is often difficult to take it all in. Some units may send the patient a copy of the GP letter. ARUK and NRAS themselves produce excellent Patient Information Leaflets. In many units you will be referred on to the Rheumatology Nurse and this will give you a better opportunity of discussing your own issues. In a few units there may be a formal Education Programme for patients newly diagnosed with rheumatoid and there may also be a patient support group. The internet has become a very prolific source of information but a lot of this may provide poor or biased information and it’s better to stick to recognised websites. Your doctor and nurse may provide you with other useful websites.
Disease Modifying Drugs (DMARDs)
Unlike NSAIDs and coxibs these medicines can reduce the long-term impact of rheumatoid arthritis. Not only do they reduce the degree of inflammation in the joints but they can reduce the extent of joint damage. This group of drugs is slow acting taking between around 3 weeks and 3 months to take effect. Most are associated with side-effects that necessitate regular monitoring of blood tests and occasionally urine. You should be provided with an information leaflet on the drug prescribed. Your rheumatology nurse may provide you with a monitoring booklet in which to record the results of your blood tests and there may be a helpline number if you run into any problems. In some areas the GPs rather than the rheumatology unit monitor the blood tests (shared care).
Nowadays the most commonly used DMARD. It is unique in that it is given once a week. Transient nausea is a common side effect but usually it is very well tolerated. You need regular blood tests as there is a slight increased risk of liver dysfunction and blood count suppression. Routinely, folic acid supplements are prescribed with the methotrexate to reduce side effects. The antibiotic trimethoprim must be avoided while you are on methotrexate to reduce side effects. In much larger doses methotrexate is used as an anti cancer drug.
This is the 2nd most common DMARD used and it is often the drug of choice in milder disease. The dose is often stepped up over a few weeks in order to minimise the common side-effects of nausea and abdominal symptoms. It can also cause a rash and should be avoided in people who are known to be allergic to the antibiotic septrin. It can cause a fall in the white cell count and abnormal liver function tests but the blood monitoring is less frequent than with methotrexate.
This is the newer DMARD which is of a similar level of effectiveness to methotrexate and sulfasalazine. Patients used to get an initial 3-day loading dose but this is now less commonly employed as this increases the frequency of the most common side effect diarrhoea. It can cause abnormalities of liver function and blood count and requires regular blood tests. It may also cause a slight rise in blood pressure so this needs also to be checked regularly. If side effects are severe then besides stopping the drug some patients may require a washout procedure with a weeks course of cholestyramine as leflunomide tends to accumulate in the body.
This is occasionally used on its own in very mild RA but is usually combined with methotrexate. It was previously used to treat malaria. Side-effects are uncommon and blood monitoring is not required. Very rarely the drug can accumulate in the eye and cause slight blurring of vision. Fortunately this is reversible. You may be provided with a card with regularly spaced black dots on it (Amsler Chart) so that you can check on your vision. Occasionally you may be referred to the ophthalmologist if you have any pre-existing visual problems.
This is usually used in combination with methotrexate. Its main side-effect is that it can affect kidney function, so this needs to be closely monitored with measuring of blood tests and blood pressure. It may also cause slightly unusual side-effects such as tremor, swelling of the gums and an increase in body hair (hirsutism). This is an immune-suppressive drug which is more commonly used as an anti-rejection drug in transplant patients.
This is another immuno-suppressive drug more commonly used in transplant patients. In rheumatoid arthritis this is often given with prednisolone to try and reduce the dose of prednisolone required (steroid sparing drug). It should initially be used in low doses as occasionally patients are very sensitive to its effects or alternatively you may have a blood test done to check if you are sensitive. The dose is usually slowly increased. Again you need regular blood tests to check for possible effects on blood count and liver function. Nausea is a common side effect but otherwise it is usually well-tolerated.
In some cases, DMARDs are prescribed one at a time (known as sequential monotherapy). However it has been shown that combination therapy may be more effective in controlling your arthritis with no significant increase in side-effects. Methotrexate is the linchpin of all combinations and may be combined with sulfasalazine or hydroxychloroquine or with sulfasalazine and hydroxychloroquine (triple therapy). Occasionally it is combined with leflunomide or ciclosporin. Methotrexate is also combined with anti-TNF therapies, which are not currently used as a first line of treatment.
References available on request
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