Patient Education Meeting
Rheumatology MDT Team
Welcome
•Introduction •Housekeeping
A Hitchhiker’s Guide to Inflammatory Arthritis
Rheumatology Registrars Aims of this session
• What is inflammatory arthritis?
• What causes inflammatory arthritis?
• Does inflammatory arthritis run in families?
• How is inflammatory arthritis treated?
What is inflammatory arthritis?
• Inflammation in the joints
• Chronic versus acute
Types of inflammatory arthritis
•Rheumatoid arthritis
•Psoriatic Arthritis
•Enteropathic Arthritis‐ related to Crohns disease or Ulcerative Colitis
•Undifferentiated Inflammatory Arthritis
What causes inflammatory arthritis?
• Autoimmune disease
• Immune system attacks self instead of germs
• Leads to inflammation
joints
Is it inherited?
• Not directly
• Increased risk if there is a family history
• Other risk factors:
• smoking
Who gets Inflammatory arthritis?
•Adults of any age, most commonly starts between 40‐50yrs
•Often commoner in women
Symptoms & signs of inflammatory arthritis
• Joint pain • Joint swelling
• Stiffness
• Tiredness (fatigue)
• Depression/irritability
• Flu‐like symptoms
• Weight loss
Systemic Features
• Other parts of the body can be affected but not in everyone
• Eg eyes, skin
• Ischaemic heart disease
• Osteoporosis
How is inflammatory arthritis diagnosed?
• History and examination
• Blood tests
• ESR/CRP (inflammation)
• Antibodies (RhF and antiCCP)
• Full blood count (anaemia)
• Imaging
• X‐ray hands/feet and chest
• Ultrasound
• MRI Why do we need to treat inflammatory arthritis?
• Control inflammation
• Improve symptoms
• Reduce joint damage • Preserve quality of life
Management of inflammatory arthritis
• Multi‐disciplinary team YOU
Multi-disciplinary team and Self-management
Painkillers (Analgesia)
•Paracetamol
•Codeine
•Co-codamol
•Tramadol
•Morphine
Non-steroid anti-inflammatories
(NSAIDs)
•Ibuprofen
•Naproxen
•Diclofenac
Medications
Disease Modifying
(DMARDs)
•Methotrexate
•Hydroxychloroquine
•Sulphasalazine
•Leflunomide
Corticosteroids
•Oral (prednisolone)
•Intramuscular injection
•Intra-articular injection
Biologics
Summary
• Inflammation in the joints
• Can occur at any age
• Cause is unknown; genes and environment
• Smoking is a risk factor
• You are an important part in management
Living Life to the Full: Hints and Tips on managing inflammatory arthritis Maureen Cox Advanced Nurse Practitioner
Aim of session
• To outline some basic information about things you can do to help manage your condition
• How to get the most out of your hospital appointment
• Measuring your condition
• How to manage a flare of symptoms
• Diet / Complementary therapies
How to get the best out of the rheumatology appointment
• Purpose of a follow‐up appointment
• Medical team – Examination and formulate treatment plan
• Patients‐ opportunity to ask questions
• Before the appointment‐ Be prepared
• Briefly summarise how your arthritis has been between appointments
• Write down any questions you would like to ask
Follow up appointments
• Prioritise appointment objectives
• Written list of points you want to get across
• Example
• Current medications
• Discuss:
• The increased pain in right knee
• The stomach ache which is worse since new meds
• Ask about new treatment I read about in….
• What to bring with you
• Current prescription, yellow card with blood results
• Ask for clarification if you don’t understand what’s being said. • After the appointment
• Book your next appointment • You should receive copy of clinic letter • Contact rheumatology practitioners via advice‐line for support between appointment
Follow up appointments
•Please cancel and re‐arrange appointment if you are not able to attend
Monitoring activity of inflammatory arthritis
• Disease Activity Score‐ DAS 28
• Developed for clinical trials, now used in routine clinics
• Measures how well your arthritis is responding to treatment
• Used to help make a decision if your treatment needs to be changed.
DAS 28
Calculated by:
• Counting the number of tender and swollen joints from the 28 joints that are most commonly affected by RA (excludes the feet)
• Asking patients to assess how active their RA has been in the past week
• Results of your most recent blood tests
• Calculated using a special calculator‐ result is a number between 0‐7. Lower score is better
Interpreting your DAS Score
DAS
Less than 2.6 Clinical remission
2.6-3.2
Low disease activity
More than
3.2
More than
5.1
May merit change in therapy for
some patients
Severe disease activity, may be
eligible for biologic treatment.
January 2011
On‐going monitoring of blood when on medication
• Clear evidence from clinical trials that DMARD’s:
• Reduce symptoms • Improve global well being
• Improve function
• Improve long term outcome and survival
• All have the potential to cause side effects • Require safety monitoring
Routine blood monitoring 1. Helps to assess effectiveness of treatment
2. Checks that medication is not causing any problems to bone marrow, liver and kidneys that you would not be aware of symptomatically
•Regular measurements of • Inflammatory markers, Full blood count, Kidney and liver function
• Should be charted on shared care card. • Your responsibility to attend for regular blood tests as part of the shared care agreement between you, your consultant and GP. Measurements of a healthy heart
• Active RA is a risk factor for the potential development of heart disease
• Routine Blood pressure monitoring
• Annual Cholesterol Check
• Altered by diet, lifestyle, exercise, weight
• Consider stopping smoking
What is a flare? • Difficult to define / Personal Experience
• Good days and bad days
• Increased symptoms • pain, swelling, joint stiffness especially in the morning, general malaise, fatigue • Possible causes of flare
• Stress, changes in weather, infection, mostly unknown
Management of a flare • Develop your own strategy
• Pain Control
• Simple pain relief medications (Over the counter)
• Paracetamol (No more than 8 tablets in 24 hrs)
• Ibuprofen gel / Voltarol gel
• Co‐codamol ( be aware : paracetamol and codine combination
Medications for Pain Relief
• Short term ‐ Non steroidal anti inflammatory medications
• take advice from pharmacist ? GP • Ibuprofen, Naproxen
• Steroid treatment
• General‐ Depomedrone injection
• Specific Joint injections
Other self help strategies • Listen to your body • Rest / Pacing/ Prioritising / gentle exercise • Managing Fatigue • Sleep / Relaxation
• Cold / Heat Therapy
• Peas, Warm water, wheat bags
• Use of Aids
• Walking Stick, Joint protection, good footwear
When to seek help and advice
• If symptoms are : • severe • not settling with usual treatment strategies
• affecting your usual activities / work • GP • Rheumatology Advice‐line General advice re medications
• Know what you are taking
• Name of Drug
• Dose • How often should you take it
• Any special precautions
• Any possible side effects
• Where to get advice if you have a problem
• Consider pre‐paid prescriptions
When to seek additional help
• Severe symptoms
• May be one or more joints
• Prolonged symptoms
• Not resolving with your usual coping mechanisms
• Affecting your normal activities, especially work. Diet
• Lots of myths re diet and arthritis
• Eat Well balanced diet
• Watch your weight
• Omega fish oils
• Calcium Complementary Therapies • Complementary therapies
• Acupuncture
• Aromatherapy
• Homeopathy
• Food Supplements: Glucosamine, CLO
• No evidence that any of these therapies control / treat inflammatory arthritis
• May help with symptom control • Relaxation
Where to go for more information
• Clinical Questions re your condition / medication • Rheumatology telephone advice line service 01865 737657
• Patient Support Group (NRAS) • Meet every 2 months 2nd Tuesday of month Recommended Websites / Organisations
• Arthritis Research UK • Tel : 0300 790 0400 • www.arthritisresearchuk.org
• National Rheumatoid Arthritis Society
• Tel : 0800 298 7650
• www.nras.org.uk
• Arthritis Care
• Tel 0808 800 4050
• www.arthritiscare.org.uk
Any Questions ? NRAS and on­going Support
• A patient group for those living with RA
• AIMS
• To provide support, education and information about Rheumatoid Arthritis in a Social environment
• To encourage self‐management of Rheumatoid Arthritis
• To support the work of NRAS and of the Rheumatology Department at the NOC • To give patients a voice
• The aims will be delivered by lectures, activities, group discussions and workshops.
What happens when I come for the first time?
• All patients are welcome. • Normally we begin at 6.30 pm in the Lecture Theatre at the NOC and begin with a drink of tea, coffee and biscuits. This is followed by a speaker on subjects such as Medication, Psychology, Exercise, Research, Self‐Management issues, Aids to help, etc, for anything between 30 minutes and one hour. Sometimes this may involve taking part in a very gentle activity or a discussion. • No charge is made, but we are willing to take a donation towards
refreshments.
• Can I bring anyone with me?
• Yes, please bring a member of the family, friend, work colleague, GP, etc.
• How often do the meetings happen?
• We hold our meetings on the second Tuesday of January, March, May, July, September and November. Occasionally an extra date may be added for a special event.
Occupational Therapy
Jackie Sherwood‐ Lead Occupational Therapist
Bethany Hougham‐ Senior Occupational Therapist Aim of session
• Explain what is “Occupational Therapy”
• What we can help with…..
• Joint protection
• Assistive devices
• Managing fatigue
• Relaxation
• Hand assessment
• Work advice
What is Occupational Therapy
Occupational Therapy aims to help people who have difficulty with everyday work, home or leisure activities.
Where and how can I see an Occupational Therapist?
• Clinic
• Self referral
• Home
• Work
• Any member of the Rheumatology Team
• Telephone • GP referral
Fatigue
Fatigue Management
•The 3 ‘Ps’
• Pacing yourself • Planning ahead
• Prioritising tasks • Relaxation techniques to help counter effects of stress and pain control.
Pacing
•“I set myself goals and plan around them. I knew I’d be busy today, so yesterday I had a very quiet day to enable me to manage today”
•Don’t fight it….. work with it”
Boom and Bust Relaxation
Relaxation is not just ‘taking it easy’. It means learning how to let go of physical muscle tension and emotional stress. When in pain over a long time you can become tense without realising it. Relaxation can break this cycle.
** Remember Relaxation takes practice. Sleep Hygiene
• Sleep problems are common
• Regular sleep pattern
• Avoid sleeping in the day
• Comfortable environment
• Relaxation methods • Avoid caffeine and electrical devices before bed
Joint Protection‐
how to reduce strain on your joints
• Joint protection does not mean you should stop using your joints, just you should try using them differently
• Spread the load through several joints
• Allow larger joints take more strain
• Aim to reduce pain and joint stresses
• Remember: “Its not what you do but the way that you do it”
Joint Protection Joint Protection Spread the load across more joints.
Joint protection…..
Small Assistive Devices Assistive devices
Cooking with arthritis…
Little changes can
make a big
difference!!
“I've had many
devices over the
years some of
which have been of
great use, others
not so much”
Work and Arthritis…the challenges
• While inflammatory arthritis is challenging it is important to remember that most people can and do carry on working.
• Many people find their problems are poorly appreciated by work colleagues.
• Support for people at work. • Awareness and understanding:
“45% felt their employer either ‘did not understand enough’ or they had ‘no idea’. (2007 survey).
What can help….
• Good communication
• Work place assessments
• Occupational Therapist
• Occupational Health Dept at work
• Access to work advisor (self refer or from Occupational Health)
• Information booklets
• Time off work
Work Advice
“ At first I didn’t want too many people to know at work. I could see in their faces that sometimes people didn’t believe me. It’s difficult because I could get out of bed tomorrow and feel I could run the marathon, and that afternoon – bang. There’s no predictability to flare‐ups. Buts it’s got better as people understand more; most of my colleagues are very helpful’.
‘Reasonable adjustments’
• Adjust working hours • Adjusting duties
• Acquiring equipment
• Improvement to access
• Transfer to another role / location
Work
• “Having an employer who understands the nature of my condition and its treatment makes a huge difference”.
• “I work 30 hours over five days. The shorter hours help me recuperate, plus I miss the traffic so I don’t have to sit hunched in a car all rush hour. Work helps me maintain ‘normality’ –
whatever that may be!”
Hand Exercises
• Help with grip and range of movement in hands and wrist.
• ‘SARAH’ exercise programme‐ strong evidence it’s effective
• Uses Theraputty for increasing strength
• Finger Grip
• Stretches Summary
• Services with OT need to be ongoing.
• You can self refer back to OT.
• Don’t be overwhelmed by the number of changes. More successful if changes are made over months or years. Physiotherapy for Inflammatory Arthritis
Jessica Wilson
Physiotherapist ‐ Rheumatology
Introduction
• Remember!..... Exercise is as important in managing your arthritis as taking your medication
• Exercise is NOT detrimental to your joints
• Exercise will help control the levels of pain and stiffness in your joints as well as improve general well‐being
• Continue to exercise during a flare
Exercise – The principles
• Regular gentle movement of your joints helps to maintain and improve:
Muscle length (flexibility)
Muscle strength
Range of movement in your joints
Minimise joint stiffness
Maintain day to day function
Types of exercise
Exercise
Cardiovascular
Joint specific
Cardiovascular Exercise
• Exercise that is strenuous enough to get you a little out of breath and increase your heart rate
• Walking, swimming and cycling are low impact
• Tai chi, yoga and pilates are good for relaxation also
• Pick something that you enjoy doing as this will help you keep it up regularly
• Apply the principles of pacing i.e. two short walks instead of one long walk which may tire you
Generation Games
• Set up by Age UK in combination with the Nuffield Orthopaedic Centre
• An age 50+ physical activity network across Oxfordshire aimed to inspire those 50+ to remain active and healthy
• Variety of local classes and activities aimed to get you doing more exercise and stay “stronger for longer”
• www.generationgames.org.uk
Joint specific exercise
• This refers to exercises to both large and small joints to move them through their full range
• Day to day tasks and work only move your joints through a limited range
• Joint specific exercises ensure joints do not become stiff and lose function
• Please refer to the “Get Moving” booklet for further information
Posture
• The posture or position you are in during the day can have a significant affect on your joint
• Exercise will help your muscles to support the position of your joints but a sustained position (e.g. at work at a desk) or relaxed (e.g. on a sofa at home) will stress your joints
• Good seating – either in your car, desk or at home will help
• Consider assessing where you sit/work and make any reasonable adjustments
• Remember no position is a good position if you are in it for too long, try to alter your position or get up and move around regularly
Pacing
• This means not doing too much of one thing at a time –
including sitting still!
• Similar to posture it is not good for your joints to keep going with one task for too long. This can make your joints stiff and painful
• Try not to overdo or under do but find a level of activity that you can manage and allow for ‘little and often’ to avoid causing yourself pain and to maintain your energy levels
• Fatigue is a common symptom therefore being able to pace your day will help manage this
Heat and Rest
• When the inflammatory process occurs, it consumes some of the fuel that would normally give you energy and this may make you more tired than normal
• Rest helps you conserve your energy, feel less tired overall and help you feel in control
• Some people find that heat helps reduce pain and help your move better – a hot water bottle of wheat pack on the area, or a warm bath or shower can reduce early morning stiffness and temporarily alleviate some pain
Making contact and what Physiotherapy can provide
• Yellow card ‐ contact number for Physiotherapy
• Helpline
• Referrals received from rheumatology team and GP on a needs assessed criteria
• 1:1 out‐patient Physiotherapy appointments
• Hydrotherapy
• Onwards referral to community services Questions?