Susan Oliver Associates - Independent Rheumatology Nursing Specialists

Your doctor, nurse or healthcare practitioner will need some information from you about your arthritis to help them assess how well controlled the arthritis is and how you are coping generally. Some of the questions you will be asked by your healthcare will include:

Are you feeling generally well?

How you feel generally apart from the problems you are experiencing with your joints will be important for the doctor or nurse to know. This will help them focus on specific ways of resolving your problems and exclude any other problems that might be contributing to your arthritis.

However, if you are feeling generally unwell this will mean a wider assessment of your health and your arthritis. Some types of arthritis cause ‘systemic effects’ (e.g. problems that could affect you generally) that must be assessed. Some examples of a 'Systemic effect' that can cause problems to other parts of your body (apart from your joints) are feelings of tiredness, fatigue or more specific problems related to your health for instance a condition called Psoriatic Arthritis also affects the skin. Some forms of arthritis have a 'systemic effect' and others don’t.

If you know your type of arthritis does not have 'systemic effects' then it might be useful to review your problems and decide if they are related to your arthritis or other problems.

Do you have stiffness of the joints?

Stiffness and pain can sometimes be difficult to separate with the discomfort of arthritis. Stiffness is usually the difficulty in 'getting going'. Pain is the experience you may have on initial movement. The doctor or nurse will want to know when you have stiffness in the joints and how long that stiffness lasts. This can help the teams know how best to help you.

In Osteoarthritis stiffness in the joints is often after sitting down for a while or periods of inactivity. It improves on movement. Sometimes one or two joints maybe especially painful and have inflammation. So understanding when the pain/stiffness occurs, which joints are affected and how long the discomfort lasts will help the team know what to do to relieve those symptoms.

Some types of arthritis can regularly have inflammation in the joint. A general term to cover all these types of arthritis is 'inflammatory arthritis'. There are many of these types of inflammatory arthritis but some of these include Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis and Reactive Arthritis. Inflammation in the joints due to the 'inflammatory' types of arthritis usually means that the stiffness is at its worst at the beginning of the day. This is usually called Early Morning Stiffness (EMS). The length of time that the EMS lasts can be an indicator of how active your arthritis is.

The length of time is usually calculated in minutes and so you can measure for yourself how long your EMS lasts. It should be measured when you first get up and moving around with difficulty in the morning to when you feel you are moving reasonably freely. The increase in EMS can be a clue to an increase in the activity of the arthritis. This is often called a 'flare'.

Do you have any pain?

Pain can be very difficult to describe. There are a number of important points that might help you to think about the pain you experience and how to explain the sensations you experience:

How bad is the pain?
Can you score the level of pain you have out of 10 with 10 being the worst possible pain you have ever experienced and 0 being no pain whatsoever? You may be asked in clinic to mark a line, which has ‘no pain at all’ on the left-hand side, and at the other end of the line has 'unbearable pain'. You will be asked to make a mark on the line indicated where you feel your pain has been along the line. This helps us to measure changes in your pain from one point in time to another. This is important as pain is a unique and individual sensation and changes should be measured against your own personal experience of pain and whether it is best or worse than last time you were seen.

When do you experience the pain?

Is the pain all the time, constantly whether you are staying still or moving? Is there a difference when you are bearing weight on the joint or not? These questions will help the doctors and nurses caring for you understand the current problems and find ways of resolving the pain. Finding ways to protect joints can reduce the pain. For instance, a painful knee may be helped by the use of a walking stick to relieve the weight on the joint. If the pain is constant the healthcare team will want to look at further information to guide their diagnosis of your problems (for instance they may wish to examine the joints, take blood tests or consider taking some fluid from the joint to analyse the fluid in the joint). In some cases, they may want to take an x-ray.

It is helpful to try and think about the pain, when it is worst, what relieves the pain and what particular movements may increase the level of pain or reduce the joints ability to work. For example, some people experience 'locking' in the knee joint, which feels like the joint cannot move anymore. This may be on going up or down stairs. A useful article on pain and how pain works can be found on the National Rheumatoid Arthritis Society website: www.nras.org.uk

What have you been doing to relieve the pain?

There are a number of ways to help relieve pain. Some pain relief is achieved using medicines but there are a number of ways of relieving pain using cold packs, rest and joint protection techniques (see Managing Pain). What your doctor or nurse will want to know include:

what methods you are using to relieve pain
are they effective
how often are you taking your medications and at what dose?
are you taking them regularly to ensure you keep control of the pain?

It is important to mention all treatments you are using to reduce the pain. This should include any alternative or complimentary therapies or other tablets you might have bought from your local chemist or health food shops.

What other tablets are your taking for other problems?

The doctors and nurses need to be sure that the medications will not interact with any other treatments you are taking or cause unacceptable side effects. It may also help them to decide what tablets they choose to prescribe for you, for instance some important types of pain relief for arthritis can be a problem for people who have problems with their heart, stomach or kidneys.

How do you feeling you are coping with your arthritis?

This is a very important question, not only because it often gives you an opportunity to talk about other things that are happening in your life. You may also feel that other things may be complicating the way you cope with your arthritis. It does help the team to understand your view of your condition and what you are hoping to achieve in care. This is an important aspect of healthcare management. We call this aspect of care person centered care - meaning that the things that are important to you are as important for the health professionals to consider when decided upon your treatment plans. These treatment plans should be as a result of ‘shared decision making’ between you and your healthcare team.
There are a number of things that can affect how you cope both mentally and physically with your arthritis. In the same way that if you were holding down a challenging full-time career other factors can affect how you manage your workload. These can include family matters and the level of understanding or support you have from the family. Whether there are any specific worries or difficulties (for instance having Rheumatoid Arthritis and having a disabled child with a long term chronic disease) will have a big effect on your workload and how you will cope both financially and physically.
Your own views and previous understanding of arthritis and particularly the type of arthritis you have may form a view about how you cope mentally with the disease. It is important if you have concerns about your disease that you ask to see a nurse/practitioner to give you enough time to discuss these issues and ensure that you have sufficient information to help you understand your disease.
It may be worthwhile taking a little time to write down a few bullet points of the important things you want to tell the health professionals you will be seeing. Remember using the time you have with them efficiently is important for your management.

See What is Arthritis, How to Manage your Arthritis, Why See a Nurse?

Your joints will be examined when you attend clinic. The number of joints that will be examined will vary depending upon the type of arthritis you have, how your arthritis is at the time of the consultation and whether you need a regular joint assessment because of the treatments you are receiving. In many hospital clinics a full joint assessment is undertaken by a rheumatology specialist nurse/practitioner. Sometimes you might be seen in a clinic in the community by a physiotherapists, nurse or doctor. These are sometimes called Triage, Musculoskeletal clinics or Clinical Assessment Teams.

The examination will include examining for pain and swelling in individual joints The swelling sometimes isn't easy to see but can be identified by skilled practitioners. Increasingly clinics are using an ultra sound machine which can see the inflammation and fluid in the joints very effectively. You may also have your joints examined to see how well your joints move. The way your joints move will help to identify specific problems you may be having. For instance, you may be asked to put your hands behind your head. This will help the practitioners see how wide your range of movements are and if movement gives you pain.

For example, you may be unable to make some movements due to pain or swelling. Some patients, particularly with inflammatory arthritis (for example Rheumatoid Arthritis) require regular treatment for their arthritis and will be asked to have a regular assessment called a Disease Activity Score 28 (DAS 28). This set of measures is used to assess the how active the disease is at the time and also includes a measure of how you feel your arthritis is. Only a certain numberof joints are assessed using the DAS 28. This is an assessment tool that has been well researched and shown to be a good measure of overall disease activity. The DAS 28 is an important assessment tool that is often used for ensuring someone is eligible for new therapies such as biologics).

For some patient information about the DAS 28 see:
https://www.nras.org.uk/
healthcare-professionals

The National Institute of Clinical Excellence have set out criteria for treatment with some of these drugs (usually given by subcutaneous injection or intravenous infusion) and information can be seen on www.nice.org.uk. The key information you need about treatment and access to treatment can be found on the NICE website. All documents and information are regularly updated on this site. The decisions NICE make are is very important as NHS organisations in England and Wales have to follow their recommendations including who can receive these therapies and when they can be started or stopped.

Increasingly it has been shown that other types of examinations (other than the usual type of x-ray) can be more effective in identifying early signs of inflammation and possible early signs of damage or changes in the bone and tissues surrounding the bone. Ultra sound can see more of the inflamed tissues that surround the joint before x-rays can identify any changes.

This is becoming an area of great interest for some types of arthritis where it is now clear that the earlier we treat these very early signs of inflammation in the joint the less long termlong-term damage that can occur to the individual with arthritis.

This is of particular benefit for people with Rheumatoid Arthritis.MRI is not routinely used by maybe used in some circumstances when other types of investigation do not provide sufficient information to help the doctor identify the problems you might be experiencing.

MRI uses a powerful magnetic field that is beamed through the body to provide pictures transmitted to a computer system. It is possible to take pictures of all parts of the body from different angles. It can show fluid, fat and other soft tissues in relation to the joints and organs in the body.

Ultra-sound scanning uses a little probe (like a pen/or wiper) that is run over the area to be looked at – a jelly like substance is used to help the probe pick up the images but it doesn’t hurt and nothing penetrates the skin. Ultra sound is carried out by a trained healthcare professional and can identify very early signs of inflammation.

If you are being reviewed regularly in a community clinic or hospital department for your arthritis it is likely that you will be asked to have blood tests and x-rays from time to time. You should have regular blood tests if you are receiving treatment for any type of Inflammatory Arthritis. Examples of the Disease Modifying Drugs used that require regular blood monitoring include: Methotrexate, Sulfasalazine, Penicillamine, Gold, Leflunomide, Ciclosporin. In addition, you should also be regularly monitored if you are treated with biologics, these include (but not limited to) treatments such as;

Abatacept
Adalimumab
Baracitinib
Certolizumab pegol
Etanercept
Golimumab
Infliximab
Remsima
Rituximab
Tocilizumab
Tofacitinib

Increasingly this list of new therapies is growing – discuss the full treatment options with your doctor or nurse.

Some hospitals have a special monitoring system in their department and others arrange to share the management of blood monitoring and review of the tests with your own General Practitioner (GP). It is important that you know the system used in your local area and that it ensures you are safe on treatment.

In many units there is an educational programme to help you understand your arthritis and some of these include information on your blood tests and what to look out for in the blood results, depending upon the treatment you are on.

Ideally you should know what your blood tests are and have a copy of them in a monitoring booklet. This is extremely helpful if you are travelling abroad with your medications, or for you to learn more about these bloods tests. If you are unsure about the blood monitoring arrangements at your hospital or health centre ask the rheumatology team or practice nurse to advise you.

Learning about your blood tests may help you to understand a little more about what happens when you have a flare or an infection and how to identify problems with your blood results.

If you are being seen regularly by your doctor/nurse or rheumatology department because of your arthritis they will want to assess you for a number of reasons. These include:

Checking that the treatment you are on is working well and controlling the disease effectively.
Assessing whether you are coping well and your mobility and range of movements is maintained.
Ensuring that you are safe and on treatment and there are no side effects as a result of treatment.
Reviewing your pain control and ensuring that you are controlling that effectively.
Checking you have the appropriate level of support to cope with your arthritis.

The monitoring of your arthritis will again vary according to the type of arthritis you have. Not all types of arthritis require a regular assessment and review but information and support should be available for you from your health centre to help you to manage your arthritis and know where to get help should you require it.

If you are attending clinic regularly it is likely that you will be asked the questions we have discussed in this section. In addition your joints maybe examined, blood tests and x-rays (or an ultrasound scan) will be reviewed and additional examinations maybe necessary depending upon the arthritis you have. You may also be asked to see a member of the rheumatology team to assess you or help to resolve problems identified in clinic. These include:

Pain management reviews.
Functional assessment - to see if you are able to manage all the practical aspects at home and work with the appropriate equipment to ensure you protect your joints and use your energy effectively.
Exercise advice and joint assessments - exercise is an important part of most types of arthritis - maintaining a good range of movements will help you to keep active and fit.
Review of footwear and devices to improve mobility - sometimes simple things that an arch support can stop further damage to joints or changes to the normal function of the joint.

Equipment support - walking sticks, bath aids, kettle tippers and other pieces of equipment can be useful.
Psychological support - there are times when how you cope mentally with your arthritis can be supported by additional guidance on support on how to focus on positive aspects of coping. This may be provided by a nurse/ practitioner, or a psychologist who understand the needs of those with arthritis.
Dietary advice. A good healthy balanced diet is important for all individuals not just those with arthritis, however, sometimes additional support for dietary advice can be especially helpful with some types of arthritis (e.g. gout).
For more detailed information and guidance visit www.nras.org.uk