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

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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)

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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

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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!)

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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!!!!

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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!

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Listen to your body!!

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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

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Where do you suffer with Raynaud’s attacks?

• Anywhere that is at the extremities:

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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

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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

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Listen to your body!!

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What about ulcers?

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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

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Working together

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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

Listen to your body!!

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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

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Listen to your body

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Fatigue and activity

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• 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

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• 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!

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•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

Listen to your body!!

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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

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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

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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

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Listen to your body!!

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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

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Avoiding reflux

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• 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

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• 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

The eat well plate

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Listen to your body

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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

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Act on anything changing – do not delay

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Access emergency/GP services when needed – don’t leave it

too late!

Reports changes in symptoms

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