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Understanding Raynaud'S: We Are Dedicated To Improving The Lives
Understanding Raynaud'S: We Are Dedicated To Improving The Lives
Understanding Raynaud'S: We Are Dedicated To Improving The Lives
RAYNAUD’S
WHAT’S INSIDE
3 About Raynaud’s ABOUT RAYNAUD’S
6 Symptoms of Raynaud’s
9 Causes and outlook
Clearing up the jargon is a good place to start.
You may hear different names for this condition,
10 How Raynaud’s is diagnosed
which is sometimes called:
12 Living well with Raynaud’s
• RAYNAUD’S DISEASE
16 Treatments for Raynaud’s
• RAYNAUD’S SYNDROME
18 Research and new developments
• RAYNAUD’S PHENOMENON (this is the term
20 Glossary of terms recommended in latest guidelines for health professionals).
22 How SRUK can help
For simplicity, we call it Raynaud’s. The condition is named
24 How to get involved after the doctor who first described it, Maurice Raynaud.
Two types
There are two types of Raynaud’s: primary and secondary.
ABOUT THIS INFORMATION
Primary Raynaud’s occurs on its own and is not linked to any
Each person has their own individual experience of
other condition. We don’t fully understand what causes it,
Raynaud’s. The symptoms can be mild, severe or anything
although scientists are working to find out.
in between, and no one is affected in exactly the same way.
Secondary Raynaud’s happens because of a medical
It does help to hear about the experiences of other people
condition. It can also be caused by certain medications.
with Raynaud’s though, and to learn about the condition. This
Read more about the causes on page 9.
information gives an overview. It explains what Raynaud’s is,
how it’s diagnosed and treated, and ways to help yourself. Both types are more common in women and may start
before the age of 30. Sometimes it runs in the family.
It’s written for individuals with Raynaud’s, and it’s useful for
family and friends too.
What happens during a Raynaud’s attack
This guide is backed up by reliable sources and evidence.
It’s been reviewed by healthcare professionals and people When we’re exposed to cold, some of our blood vessels,
who are living with Raynaud’s. such as those in the fingers, get narrower. This is a normal
response to help the body’s core stay warm. In primary
If you need more details and support, get in touch with us Raynaud’s, this reaction is exaggerated, causing poor
at SRUK – we’re here to help. blood flow to the affected part of the body.
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SCLERODERMA & RAYNAUD’S UK UNDERSTANDING RAYNAUD’S
Raynaud’s can be uncomfortable and get in the way of daily • may have milder • may have more
life sometimes, but generally the symptoms are manageable. symptoms and does severe symptoms
not cause damage to like finger ulcers
As much as you can, it helps to avoid the main symptom
triggers, which are: the skin • may need
• may mostly be managed medical treatment
• exposure to cold with practical steps
• being stressed
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SCLERODERMA & RAYNAUD’S UK UNDERSTANDING RAYNAUD’S
10 million
Feet extremities, like your hands and
feet. This squeezing action is
*It’s less common for these called vasospasm.
areas to be affected
People in the UK are
affected by Raynaud’s
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SCLERODERMA & RAYNAUD’S UK UNDERSTANDING RAYNAUD’S
S
H
N
i t:
C re
d autoimmune condition (see With secondary Raynaud’s,
below). So if your symptoms repeated, severe attacks can
get worse or you develop new damage the tissues that have
1 Your skin goes white when the blood supply gets ones, it’s important to see your been starved of blood flow. This
cut off to the skin. GP and get it checked out. can cause painful sores on the
2 It turns blue when the blood trapped in the skin loses fingers and sometimes the toes
Secondary Raynaud’s always
its oxygen (cyanosis). (digital ulcers).
has an underlying cause. It’s
sometimes a symptom of other The ulcers can be very painful
3 The area turns red when blood flow returns to normal. conditions such as: and affect daily tasks. They
Not everyone with Raynaud’s has all of these colour changes. can take a long time to heal,
• Scleroderma
and they can get infected, so
• Lupus it’s important to get treatment
• Sjogren's syndrome quickly. You’ll find a fact
sheet about digital ulcers
Signs of another problem These are all autoimmune
on our website.
conditions where the body’s
Raynaud’s can be the first symptom of a potentially serious
immune system, which is meant
condition called scleroderma. Other symptoms that might
to protect you against infections,
www.sruk.org.uk
suggest scleroderma include swollen fingers, heartburn
mistakenly attacks your
(reflux) and breathing problems.
connective tissues.
It’s important to see your GP if you also have these
Other medical conditions can
symptoms, or if they start to appear. Your GP can refer
also cause Raynaud’s. So can
you for tests, to find out whether you have an underlying
various drugs, exposure to
condition that needs treatment.
certain chemicals and the use
of vibrating tools.
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SCLERODERMA & RAYNAUD’S UK UNDERSTANDING RAYNAUD’S
things checked out. That’s because your GP can This can be higher when there’s
give you advice on managing the condition, Erythrocyte
inflammation (also goes up as
ESR we get older). Can show whether
and help you find out if there could be an sedimentation rate
more tests are needed for an
underlying cause. autoimmune condition.
It’s also likely that you’ll be offered some blood tests (see
table) and some of these can be done at your GP surgery.
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TREATMENTS
FOR RAYNAUD’S
We don’t have a cure for Raynaud’s yet, There are other drug treatments that your doctor might
but treatment aims to manage symptoms. recommend to open up the blood vessels. Below is a list of
the drug classes, and an example of a specific medicine for
Self-care is a very important part of your treatment. each one:
Please see page 12 for everyday ways to manage Raynaud’s.
• angiotensin receptor blockers (losartan)
Your GP can help by explaining the condition and suggesting
• antidepressants (fluoxetine)
practical ways to avoid and manage Raynaud’s attacks.
• alpha blockers (prazosin)
• phosphodiesterase inhibitors (sildenafil)
Drug treatment
• iloprost infusion
If everyday changes alone aren’t The headache often disappears
helping, your doctor may offer after a few days of treatment
you treatment with a medicine. as the brain adjusts to the Further options
new blood pressure within the You should be referred to a specialist if this treatment does
Often, the first medicine that is skull. You may need to take an not work, or if your GP suspects secondary Raynaud’s.
tried is nifedipine. This medicine occasional painkiller such as
is classified as a calcium paracetamol during the first A specialist might recommend other drug treatments to try
channel blocker. It works by few days of treatment to help or, rarely, surgery.
relaxing your blood vessels, manage headaches, as your
thus improving circulation. With secondary Raynaud’s, good management of your other
body gets used to the blood condition may also help with the Raynaud’s symptoms.
Side effects can happen with vessels being opened up.
any drug, but not everyone You’ll find more details about treatment options on our
Dizziness, flushing, website, or call our help line.
experiences them. Some of light‑headedness and fast
the side effects for nifedipine
include dizziness, flushing,
heartbeat are also caused 0800 311 2756
by the blood vessels being
headache, swollen hands opened up. These symptoms www.sruk.org.uk
and feet, feeling or being may persist with continued
sick, constipation, rash or treatment, so sometimes people
a fast heartbeat. need a lower dose, or their
The headache is a sign that doctor advises them to stop
the blood vessels are being taking nifedipine.
opened up and is not worrying.
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SCLERODERMA & RAYNAUD’S UK UNDERSTANDING RAYNAUD’S
GLOSSARY OF TERMS
Antibody Capillary Reflux (also called Sjogren's syndrome
A protein made by your The tiniest blood vessels, with acid reflux) An autoimmune, connective
blood, normally as part of your walls that are only one cell Full name gastro-oesophageal tissue condition, often with dry
immune response to a germ. thick. They are the link between reflux disease (GORD). eyes and mouth, sometimes
Some blood tests for Raynaud’s your arterial circulation, which Heartburn symptoms caused associated with Raynaud’s.
look at various antibodies. carries oxygen and nourishment by stomach acid leaking up into
to your tissues and the venous your gullet. Can be a symptom Systemic sclerosis
circulation, which carries away of scleroderma.
Arterioles
carbon dioxide and wastes. Another name for scleroderma.
The small branches of your
blood vessels that carry oxygen Scleroderma (also known
Cyanosis as systemic sclerosis) Vasospasm
to the tissues.
When your skin is blue because When a blood vessel squeezes
An autoimmune, connective
the blood in that area does not and becomes narrower, reducing
Autoimmune disorder tissue condition with skin
have enough oxygen. the blood flow.
thickening, very commonly
When your immune system,
associated with Raynaud’s.
which normally fights off
infections, mistakenly attacks
Idiopathic
your own tissues. A symptom or condition that
has an unknown cause.
Calcium channel blocker
A type of drug (class) used to
Lupus
treat Raynaud’s. One example Full name systemic lupus
is nifedipine. erythematosus (SLE). An
autoimmune, connective
tissue condition, sometimes
Capillaroscopy
associated with Raynaud’s.
A test where the doctor
examines the tiny blood
vessels at the base of your
fingernails, through a magnifier
or microscope.
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SCLERODERMA & RAYNAUD’S UK UNDERSTANDING RAYNAUD’S
Research
We fund scientific and medical research to better understand
the causes and progression of the conditions, enabling us to
find better treatments as we work towards a cure.
Become a member
Being a member of SRUK is a great way to receive all
the latest information on the work of the charity and
advancements in treatment and research. Membership
entitles you to:
Donate to us
Donating will help support the life-changing work of
Scleroderma and Raynaud’s UK. There are many ways to
donate including one off or monthly donations, leaving a gift
to us in your Will or nominating us as Charity of the Year at
your company.
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SCLERODERMA & RAYNAUD’S UK UNDERSTANDING RAYNAUD’S
References
Belch J, Carlizza A, Carpentier PH, et al. ESVM guidelines Hughes M, Ong VH, Anderson ME et al. Consensus best Temprano KK. A Review of Raynaud’s Disease. Diosmiplex (Vasculera®) in Primary and Secondary
– the diagnosis and management of Raynaud’s practice pathway of the UK Scleroderma Study Group: Mo Med 2016;113(2):123–6. Available from: Raynaud’s Phenomenon – Full Text View – ClinicalTrials.
phenomenon. VASA. 2017 Oct;46(6):413–23. Available digital vasculopathy in systemic sclerosis. Rheumatology www.ncbi.nlm.nih.gov/pmc/articles/PMC6139949/ gov. Last accessed: Dec 52018. Available from:
from: www.vascular-medicine.org/wp-content/ (Oxford);54(11):2015–24. Available from: www.academic. www.clinicaltrials.gov/ct2/show/NCT02683408
uploads/2017/11/ESVM-GUIDELINES-RAYNAUDS- oup.com/rheumatology/article/54/11/2015/1773082
Wigley FM, Flavahan NA. Raynaud’s phenomenon.
PHENOMENON.pdf
N Engl J Med 2016;375:556-65. Effectiveness of Electric Stimulation Therapy in
Malenfant D, Catton M, Pope JE. The efficacy of Raynaud’s Phenomenon – Full Text View – ClinicalTrials.
Cleveland Clinic. 2015. Raynaud's Phenomenon: complementary and alternative medicine in the treatment gov. Last accessed: Dec 5 2018. Available from:
ANA. Last accessed: Nov 20 2018. Available from:
Treatment Options. Last accessed: 21 Dec 2018. of Raynaud’s phenomenon: a literature review and meta- www.clinicaltrials.gov/ct2/show/NCT03699436
www.labtestsonline.org.uk/tests/antinuclear-
Available from: www.my.clevelandclinic.org/ analysis. Rheumatology (Oxford). 2009 Jul 1 ;48(7):791–5.
antibody-ana-test
health/articles/raynauds-phenomenon-vascular/ Last accessed: 2018 Dec 2. Available from: www.academic.
Adalat – Summary of Product Characteristics (SmPC) –
treatment‑options oup.com/rheumatology/article/48/7/791/1788881
ESR (Erythrocyte sedimentation rate) – Understand (eMC). Last accessed: Dec 2 2018. Available from:
the Test. Last accessed: Nov 20 2018. Available from: www.medicines.org.uk/emc/product/6280/smpc
Snapir A, Wilkinson J, Snapir D, Wigley FM, Herrick Mayo Clinic. 2017. Raynaud’s Disease. Last accessed:
www.labtestsonline.org.uk/tests/erythrocyte-
AL. Prediction and impact of attacks of Raynaud’s 4 Dec 2018. Available from: www.mayoclinic.org/diseases-
sedimentation-rate-esr Antibody: MedlinePlus Medical Encyclopedia.
phenomenon, as judged by patient perception. conditions/raynauds-disease/symptoms-causes/syc-
Last accessed: Dec 5 2018. Available from:
Rheumatology (Oxford) 2015;54(8):1443-47. 20363571
Full Blood Count – Understand the Test. www.medlineplus.gov/ency/article/002223.htm
Last accessed: Dec 52018. Available from:
Ennis H, Hughes M, Anderson ME, Wilkinson J, Herrick Mental Health Foundation. 2016. How to manage and
www.labtestsonline.org.uk/tests/full-blood-count-fbc Autoimmune disorders: MedlinePlus Medical Encyclopedia.
AL. Calcium channel blockers for primary Raynaud’s reduce stress. Last accessed: Dec 2 2018. Available from:
Last accessed: Dec 2 2018. Available from:
phenomenon. Cochrane Database of Systematic Reviews. www.mentalhealth.org.uk/publications/how-manage-and-
SRUK research strategy. Available from: www.sruk.co.uk/ www.medlineplus.gov/ency/article/000816.htm
2016;(2). Last accessed: Nov 13 2018. Available from: reduce-stress
www.cochranelibrary.com/cdsr/doi/10.1002/14651858. media/filer_public/db/6f/db6ff74d-0ff2-4ea5-a7ef-
CD002069.pub5/abstract 12b0ea067b2d/20170418_research_strategy__2.pdf Gastroesophageal reflux disease symptoms and
MSD Manual Professional Edition. Raynaud Syndrome
conditions. Last accessed: Dec 5 2018. Available from:
– Cardiovascular Disorders. Last accessed: Nov 19
Nutritional Strategies to Increase Nitric Oxide Signaling www.nhsinform.scot/illnesses-and-conditions/stomach-
Fardoun MM, Nassif J, Issa K, Baydoun E, Eid AH. 2018. Available from: www.msdmanuals.com/en-gb/
in Raynaud’s Phenomenon – Full Text View – liver-and-gastrointestinal-tract/gastro-oesophageal-reflux-
Raynaud’s Phenomenon: A Brief Review of the Underlying professional/cardiovascular-disorders/peripheral-arterial-
ClinicalTrials.gov. Last accessed: Dec 5 2018. Available disease-gord
Mechanisms. Front Pharmacol. 2016 Nov 16;7. Available disorders/raynaud-syndrome
from: www.ncbi.nlm.nih.gov/pmc/articles/PMC5110514/ from: www.clinicaltrials.gov/ct2/show/NCT03749577
Oxford concise medical dictionary, 9th edition, 2015
National Heart, Lung, and Blood Institute (NHLBI).
Garner R, Kumari R, Lanyon P et al. Prevalence, risk Raynaud’s. Last accessed: Dec 2 2018. Available from: Beet the Cold: The Effect of Inorganic Nitrate
factors and associations of primary Raynaud’s www.nhlbi.nih.gov/health-topics/raynauds Supplementation in Individuals With Raynaud’s
phenomenon: systematic review and meta-analysis Phenomenon – Full Text View – ClinicalTrials. gov.
of observational studies. BMJ Open. 2015 Mar Last accessed: Dec 5 2018. Available from:
NHS Choices. 2017. Raynaud’s. nhs.uk 2017.
1;5(3):e006389. Last accessed: Nov 13 2018. Available www.clinicaltrials.gov/ct2/show/NCT03129178
Last accessed: Nov 17 2018. Available from:
from: www.bmjopen.bmj.com/content/5/3/e006389 www.nhs.uk/conditions/raynauds/
Efficacy and Tolerability of Ginkgo Biloba Extract in
Hansen-Dispenza H. 2018. Raynaud Phenomenon. Patients With Raynaud´s Phenomenon – Full Text View
NHS Inform (Scotland). Raynaud’s phenomenon.
Last accessed: Nov 19 2018. Available from: – ClinicalTrials.gov. Last accessed: 2018 Dec 5. Available
Last accessed: Dec 4 2018. Available from:
www.emedicine.medscape.com/article/331197-overview from: www.clinicaltrials.gov/ct2/show/NCT00251238
www.nhsinform.scot/illnesses-and-conditions/heart-and-
blood-vessels/conditions/raynauds-phenomenon
Herrick AL. Evidence-based management of Raynaud’s Single-port Thoracoscopic Sympathicotomy for
phenomenon. Ther Adv Musculoskelet Dis. 2017;9(12): Treatment of Raynaud’s Phenomenon, a Feasibility
NICE. CKS: Raynaud’s phenomenon. Last accessed:
317–29. Available from: www.ncbi.nlm.nih.gov/pmc/ Study – Full Text View – ClinicalTrials.gov. Last accessed:
Nov 2018. Available from: cks.nice.org.uk/raynauds-
articles/PMC5700788/ Dec 5 2018. Available from: www.clinicaltrials.gov/ct2/
phenomenon#!topicsummary
show/NCT02680509
Herrick A, Muir L. Raynaud’s phenomenon Perry M, Surtee S, Nawaz Z. Raynaud’s of the Tongue.
(secondary). BMJ Clin Evid. 2014 Oct 14 ; 2014. Nova Cold Hands Raynaud’s Disorder, a Disease Which
European Journal of Case Reports in Internal Medicine;
Last accessed: Nov 17 2018 Results in Decreased Blood Flow to the Hands and Feet.
2017:2. Available from: www.ejcrim.com/index.php/
– Full Text View – ClinicalTrials.gov. Last accessed:
EJCRIM/article/view/689
Dec 5 2018. Available from: www.clinicaltrials.gov/ct2/
show/NCT02615964
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