Step 5

Step 5Once you have been diagnosed and a treatment plan started, it is likely that your specialist team will see you regularly and quite frequently initially until you are well controlled on treatment. Then the time  between appointments will change and you will be seen less frequently. However, the important things you need to know are how to access rapid care should things change and you experience a problem or your symptoms get worse (most specialist teams have an advice line which is usually run by the specialist nurse, so make sure you know the number) and make sure that you go for regular monitoring (blood tests) at the times you have been asked to by your team.  This is important for your own safety.   Blood tests can take place at your GP surgery or you may have to go to the hospital for this. Your GP will usually share some of your care with the specialist team and the amount of ‘shared care’ will vary from area to area, however your GP is another source of help and support. Once your disease is under good control, you should have a review at least once a year with your team.

The following topics will be covered in this step:

  • Annual Review and national guidance for Inflammatory Arthritis
  • Rights and responsibilities of patients and health care staff
  • Work related issues and benefits
  • Access to psychological therapies
  • Sleep
  • Patient stories
  • Information on Symptom Control
  • Travel issues and insurance
  • Family and relationships
  • Assessing cardiovascular risk (heart attack)
  • Lifestyle advice

Annual Review and national guidance for Inflammatory Arthritis

Once a year, you should have a in-depth check-up. This involves a member of your healthcare team looking in greater detail at the management of your rheumatoid arthritis, the impact it's having on your life, how you feel in yourself, and your overall state of health.

NRAS information on the DAS28 score (including videos, booklets and article) -  The DAS28 is a measure of disease activity in rheumatoid arthritis (RA). The score is calculated by a complex mathematical formula, which includes the number of tender and swollen joints (out of a total of 28), the erythrocyte sedimentation rate (ESR, a blood marker of inflammation), and the patient’s ‘global assessment of global health' (indicated by marking a 10 cm line between very good and very bad). A DAS28 score greater than 5.1 implies active disease, less than 3.2 well controlled disease, and less than 2.6 remission.

NRAS booklet: Managing Well – Living with RA - If you're living with rheumatoid arthritis and you'd like to know more about how to manage your disease and stay in control, this booklet is for you. Its contents include - Self management: what it is and how it helps, making the most of your care and treatment, keeping well, including having a healthy diet and managing fatigue.

Understanding NICE Guidance -This booklet is about the care and treatment of adults with rheumatoid arthritis in the NHS in England and Wales. It explains guidance (advice) from NICE (the National Institute for Health and Clinical Excellence). It is written for people with rheumatoid arthritis but it may also be useful for their families or carers or for anyone with an interest in the condition

SIGN (Scottish) quidance on RA management - guidelines for those with living in Scotland 

BSR/BHPR Guidelines on Safety of anti-TNF – British Health Professionals in Rheumatology (BHPR)

Rights and responsibilities of patients and health care staff

Patients Association website - The Patients Association is an independent, national charity that highlights the concerns and needs of patients

Citizens Advice Bureau information on health rights  - provides information on what help is available through the NHS; patients’ rights; help with health costs; how to make a complaint; health services for people abroad

NHS Constitution – This outlines what is important to the NHS – its principles and values, your rights, the NHS pledges to you and the responsibilities of the public and NHS staff

Work related issues and benefits

NRAS booklet: I want to work, a self help guide for people with rheumatoid arthritis - In this booklet you will find up-to-date and accurate advice and information, to make sure you can find the help you need to stay in your job. If you're worried about your career following a recent diagnosis of RA, you can find more information about what kind of support you are entitled to. This booklet also discusses the options of re-training or moving to different types of job within an organisation. These can be worth thinking through if you're feeling that you may have difficulties continuing in your current role, due to physical limitations for example.  

NRAS booklet: When an employee has rheumatoid arthritis – an employer’s guide  - Within the booklet you will find information about the disease and how it can affect people at work, the kind of difficulties it can cause and how these may be overcome. It also includes up-to-date details of where employers can go get help and advice on the law relating to disability, on best practice and on making adjustments for employees and work.

NRAS booklet: Benefits and rheumatoid arthritis  - this guide aims to make it easier for you to understand how to find out more about benefits that may be relevant for you and your family.

NRAS booklet: How to claim Personal Independence Payments – a self help guide for adults with rheumatoid arthritis  

Citizens Advice Bureau information on health rights- Information on what help I available through the NHS; patients’ rights; help with health costs; how to make a complaint; health services for people from abroad

Gov.uk website -  support that may be available across a range of issues such as employment, transport and finances

Access to psychological therapies

These services should be available on the NHS via a referral from your GP or rheumatology department, in the first instance, seek help from your GP. The following NRAS publication contains information that may help:

NRAS Booklet Emotions, Relationships and Sexuality

Sleep

NRAS article on getting a good night’s sleep

NRAS website article on sleep improvement strategies

BBC website article on sleep

NRAS booklet: Managing Well – Living with rheumatoid arthritis  - offers some tips and advice about getting a good night’s sleep

Patient stories

Healthtalk Online Website  -. Healthtalkonline is an award-winning charity website that lets you share in other people's experiences of health and illness
NRAS website 'Your Stories'  

NRAS Volunteer Network – more information about how to get involved with NRAS via our peer to peer support or local groups

NRAS Healthunlocked  - an online community which offers the opportunity for you to talk and discuss a myriad of issues with others who have RA

Information on Symptom Control

Managing Flares

NRAS article on managing flares

NRAS booklet: Managing Well – Living with rheumatoid arthritis  - offers some tips and advice about getting a good night’s sleep

Symptom control

British Sjogren’s Syndrome Association information on “Dry Eyes”  - Sjögren's Syndrome is an autoimmune disease which affects approximately 0.5 million people in the UK, the most common symptoms are dry eyes, dry mouth, dry skin and also dryness of the gastrointestinal tract

NRAS booklet Medicines in rheumatoid arthritis 

NRAS article on managing the pain of rheumatoid arthritis

NRAS booklet on Fatigue coming soon

Pain Concern Website - Pain Concern provides information and support for people living with pain and those who care for them and about them

British Pain Society publications for patients – The British Pain Society produce a wide range of publications including: Managing your pain effectively using ‘Over the Counter’ medicines and Opioids for persistent pain

NRAS information on foot health

NRAS article on depression - outlines why you might be feeling depressed and what you can do about it

Travel issues and insurance

NRAS article on immunisation for people with rheumatoid arthritis

Gov.uk Vaccine Guidance

Travel doctor site  - very useful interactive site if you are travelling to countries where you need vaccinations

Contact NRAS directly for a list of insurance companies which have been recommended by our Members

Family and relationships

NRAS article on rheumatoid arthritis and pregnancy  - this article discusses how to manage your RA whilst you are trying for a baby as well as during the pregnancy and after

NRAS article on breastfeeding and rheumatoid arthritis - an outline of the best way to manage your RA whilst breastfeeding and the drugs which are safe to use during this period

NRAS article on Sex, Drugs & RA

NRAS booklet: Emotions, relationships & sexuality 

NRAS booklet: Newly Diagnosed – A guide to your next steps

NRAS booklet: Managing Well – Living with rheumatoid arthritis

Organisation of Teratology Information Specialists  - this organisation provide factsheets on range of medications and their use in pregnancy. MotherToBaby is the name for its public-facing service and research studies.

Carers UK Website

Relate Website

Assessing cardiovascular risk (heart attack)

NRAS Interactive video Love Your Heart

Lifestyle advice

NRAS articles on exercise and rheumatoid arthritis

NRAS article on diet and rheumatoid arthritis

NRAS booklet: Managing Well Living with RA - If you're living with rheumatoid arthritis and you'd like to know more about how to manage your disease and stay in control, this booklet is for you. Its contents include - Self management: what it is and how it helps, making the most of your care and treatment, keeping well, including having a healthy diet and managing fatigue.

Live Well Website  - NHS Choices pages with information and advice about keeping fit and healthy