what can i do to help my raynaud's and scleroderma?
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What can I do to help my
Raynaud's and Scleroderma?
World Scleroderma Day Celebration
3rd July 2014, RNHRD
Sue Brown MSc RGN NIP EN(G) Consultant Nurse in Rheumatology
Royal National Hospital for Rheumatic Diseases
NHS Foundation Trust, Upper Borough Walls, Bath, BA1 1RL
What can I do to help my Raynaud's and Scleroderma
Presentation Overview
• Raynaud's
• Looking after my skin
• Preventing and treating digital ulcers
• Scleroderma • Managing symptoms – fatigue, activity and goal setting
• Looking after dry eyes and dry mouth
• Looking after my gut - controlling reflux, sensible dietary advice
• Looking after my heart and lungs- acting on symptoms, monitoring
• Listen to your body!!
www.rnhrd.nhs.uk
What does the skin do for us?
• It is an organ that is made up of
cells and tissues
• It acts as a boundary between you
and the world
• It is flexible and can expand when
needed for protection
www.rnhrd.nhs.uk
What does the skin do for us?
• Packed full of sensors in order to help us deal with injury
and exposure to the elements (sunlight)
www.rnhrd.nhs.uk
EPIDERMIS – barrier to the
outside
DERMIS – inside layer that
responds to head and cold,
includes nerve endings, sweat
glands, hair follicles and much
more…..
FAT – subcutaneous layer which
contains blood vessels
What Happens to my skin in Scleroderma?
Skin becomes thickened
in scleroderma, which can
lead to:
• less flexibility
• swollen and skin
hardening on fingertips
• severe dryness and
cracking
• discolouration and
itching
www.rnhrd.nhs.uk
The Rules – Skin Care
Always protect your skin with creams, ointments or emollients
They replenish the natural oils in your skin to reduce dryness
Creams are water based so can only provide short-term
protection
Ointments are oil based and give longer term protection
If severe dryness, apply creams at night and cover hands
with cotton gloves
Use emollients in the bath (take care not to slip!)
www.rnhrd.nhs.uk
So how can I help myself and my skin?
Control itching
Itchy skin can very easily become sore skin and then
broken skin
Treat with creams such as Eurax or antihistamines
Sun protection
Use UVA and UVB rated creams
Avoid the midday sun
Protect car windows if needed
Do not fiddle with the cuticles on your nails or any calcinosis
Keep the nails trimmed and filed
Cover areas of calcinosis
Our skin protects us but it is also full of bugs!!!!
www.rnhrd.nhs.uk
So how can I help myself and my skin?
Avoid using soap
This does not mean you do not wash!
Replace with a soap substitute such as Aqueous Cream
Use a wax bath for heat, pain management and re-hydration
Always use gloves when washing up
Or invest in a dishwasher
Or a good husband/wife!
www.rnhrd.nhs.uk
What Happens In a Raynaud’s attack?
• Raynaud’s Phenomenon is a condition that affects the
circulation
• It is an exaggerated response that is:
• Episodic – comes and goes
•Triphasic – three colour changes
• Response to stimuli to either stress or temperature
change
www.rnhrd.nhs.uk
What Happens to my skin in Raynaud's?
• Raynaud’s leads to:
• Episodes of blood vessel spasm
• Reduced blood flow and oxygen levels to the
peripheries
• Reduced ability for the skin to heal itself
• More frequent attacks can lead to development of digital
ulcers, especially in those with Scleroderma
www.rnhrd.nhs.uk
Controlling my Raynaud's attacks
•Sensible advice – keep warm, use hand warmers, gloves
• Maintain a stable temperature wherever possible
• Minimise stress (if possible)
• Medications can help - vasodilators
• can sometimes be limited by side effects
• some can make it worse – beta blockers!
• High dose evening primrose oil/fish oils can help in some
• Gingko Biloba can help in some
www.rnhrd.nhs.uk
What about ulcers?
www.rnhrd.nhs.uk
Dryness,
calcinosis, digital
pitting scars
Established
ulceration, loss of
nail, scars
So what can I do to prevent ulcers developing?
• An ulcer is a break in the skin that takes a long time to heal
• Leave any areas of hyperkeratosis alone
• Apply cream to soften the area only
• If the wound does become infected
• Yellowy coloured discharge
• Redness, swelling, pain
• Failing to heal
• Contact your local rheumatology team/GP
• Start tablet antibiotics and dress wound with
Inadine/Meplilex
• If the ulcer worsens then admit for IV iloprost and antibiotics
• Keep a digital ulcer diary to map and document the location of
the ulcers
• Monitor response to treatment
www.rnhrd.nhs.uk
Working together
www.rnhrd.nhs.uk
Prevention of
ulcers
Treatment of
ulcers
Vigilant hand care Creaming regularly to improve skin
texture, esp. after washing Covering any broken areas with a
clean plaster/Inadine/Mepilex Monitoring for any signs of
infection Keeping warm
Antibiotics if infection present Optimum Raynaud’s treatment Regular review for pain killers
IV Iloprost and antibiotics if needed Application for Sildenafil or Bosentan
if persistent and unresponsive to conventional treatments
Scleroderma – managing symptoms
• Scleroderma can affect different parts of the body
• Things can be improved by developing an understanding
of the condition and how it can affect you
• Understanding and managing fatigue
• Looking after dry eyes and dry mouth
• Looking after my gut - controlling reflux, sensible dietary
advice
• Looking after my heart and lungs- acting on symptoms,
monitoring
Putting you in charge of your symptoms wherever possible
Getting support from others
www.rnhrd.nhs.uk
Fatigue and activity
www.rnhrd.nhs.uk
• With scleroderma, some activities that you do may lead to worsening fatigue
• So what is activity? • Work – paid or unpaid
• Self care – washing, dressing, feeding
• Leisure – hobbies, sport, interests
Fatigue and goal setting
www.rnhrd.nhs.uk
• Just think about whether you have ‘good’ days and
‘bad’ days
• Do you tend to overdo things on a good day that
then results in a bad day?
• Increasing symptoms of fatigue and pain
• This is called the ‘boom and bust’ approach to
activity management
• If you continue with this on a regular basis
• over time you become less able to achieve the
same amount of activity on a good day
• You can use goal setting that allows you to achieve
something of importance to you, even on a bad day
• Using the SMART principles
• Specific, measurable, achievable, realistic,
time restricted
Pay attention!
www.rnhrd.nhs.uk
•There is a key to living with fatigue
•Try to understand you body
• Look for times and situations where your
fatigue becomes worse
•Try to recognize if your condition is more active
and seek medical advice is needed
•Consider your plans
• Look at your sleep pattern
•Ask for help when you need it
Looking after dry eyes and dry mouth
• Commonly called ‘sicca’ symptoms
• Most complications result from decreased tears and
saliva production
• Dry eyes can lead to infections and possible damage to
the cornea
• Dry mouth can cause increase in:
• Dental decay
• Gingivitis (gum inflammation)
• Oral thrush
• Pain and burning
• Painful swelling in facial salivary glands
www.rnhrd.nhs.uk
Looking after dry eyes and dry mouth
Dry eyes
• Avoid dry atmospheres
• Humidify rooms
• Wear glasses with side arms
• Tear replacements
• Hypromellose (preservative free)
• Viscotears or Lacrilube
• If sticky – Acetylcysteine
• Antibiotic eye drops if infected
www.rnhrd.nhs.uk
Looking after dry eyes and dry mouth
Dry mouth
• Sips of water (rather than glugs)
• Avoid sugared drinks
• Chew sugarless chewing gum
• Saliva replacements
• Gels, gums, sprays
• www.biotene.co.uk
• SSTs (saliva stimulation tablets)
• Salivix pastilles
• Spoonful sugar free Greek yoghurt before bed
• Review meds list
• Some can worsen
dry mouth symptoms
www.rnhrd.nhs.uk
Looking after my gut
Difficulty, painful swallowing
Eat slowly, chew well and drink lots of water
Avoid foods that will ‘stick’ – white bread, steak, chips
Consider drugs to improve movement in the bowel
Surgical treatment only if severe
Reflux Weakening of the sphincter muscles Acid flows back into the oesophagus Persistent reflux damages lining and may lead to:
• Heartburn, regurgitation, dysphagia • Ulceration, bleeding • Stricture • Barrett’s oesophagus (caused by chronic reflux) • Persistent cough, non cardiac chest pain, hiccups
Effective treatment of reflux is important and may need high dose PPIs
www.rnhrd.nhs.uk
Avoiding reflux
www.rnhrd.nhs.uk
• Avoid eating 2-3 hours before bedtime
• Avoid drinking 11/2 hours before bedtime
• Stop smoking (also for advice for Raynaud’s)
• Elevate head of bed 4-6” and sleep propped up
• Lose weight
• Avoid reflux producing foods – fat, chocolate, caffeine, alcohol
• Avoid or minimise acidic foods such as citrus juice
• Decrease meal volume, increase frequency of meals
Managing a ‘sluggish’ bowel
www.rnhrd.nhs.uk
• Scleroderma can cause the bowel to be ‘sluggish’
• Follow a well balanced diet
• Report and abdominal swelling, pain, diarrhoea or constipation
• We can refer to gastroenterologists if needed
• Some benefit from rotating courses of antibiotics
• Probiotics (drinks, tablets) can help in some
• Maintain a good fluid intake
• Avoid foods that worsen symptoms – spicy, fatty, rich, dry foods
Cardio pulmonary symptoms
• Regular monitoring with pulmonary function test and echo are
essential
• Reports any changes in symptoms
• Breathlessness
• On the flat
• On exertion or inclines
• Cough
• Consider chest infection
• Stop smoking
• Chest pain
• Palpitations
www.rnhrd.nhs.uk
Act on anything changing – do not delay
www.rnhrd.nhs.uk
Access emergency/GP services when needed – don’t leave it
too late!
Reports changes in symptoms
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