Hot News - 117 by DMMonline

m of

st nd m er on s. e.

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 2

hot news Issue No. 117

So Rare Card

Volume 3 2011

In this issue...

Newcastle Meeting Pages 8

World Scleroderma Awareness Day took place on Wednesday 29th June 2011. To mark the occasion the RSA highlighted the warning signs of scleroderma by launching a handy pocketsized 'SO RARE', information card. This card details three of the early symptoms of scleroderma - sore swollen fingers, Raynaud’s Syndrome and reflux/heartburn. Identifying these symptoms is essential as early diagnosis can save lives. To request a copy please send an SAE to: RSA, 112 Crewe Road, Alsager, Cheshire ST7 2JA.

Annual Conference 2011 The RSA’s 29th Annual Conference will take place on Saturday 24th September at the Ramada Hotel in Chester. The event will be an ideal opportunity to learn more about the conditions from experts in the field whilst making new friends. Overnight accommodation is available for those wishing to stay for the weekend. Topics to be covered include an overview and treatments for Raynaud's and scleroderma, involvement of the lungs, mouth problems, foot care, managing ulcers, wound care, physiotherapy, nutritional implications and DHS benefits. The full programme is on our website and a report will be in the next issue of Hot News. We are limited in numbers due to the size of the conference room, so book as soon as possible if you want to secure a place. For further information and to request a booking form please call us on 01270 872776 or email fiona@raynauds.org.uk

Leeds Meeting Page 8

New Research Grants The total commitment to research at this present time is £985,000 which includes the following grants, that have recently been awarded: University of Leeds (Chapel Allerton Hospital) A novel, longitudinal study of cardiac electrophysiological and structural changes in patients with systemic sclerosis - 3 year project - Dr Maya Buch Royal Free Hospital - Exploration of the role of interleukin-6 in systemic sclerosis: differential expression and the potential role of IL-6 in determining clinical outcome in active SSc - 2 year project - Professor Chris Denton & Dr Voon Ong Royal Free Hospital - Interplay between interstitial lung disease and pulmonary

hypertension, in prognosis and response to treatment of patients with systemic sclerosis - 1 year project - Dr Benjamin Schreiber

Fundraising Page 11

The RSA is also currently funding research and welfare projects at the following centres: Newcastle University; Royal National Hospital for Rheumatic Diseases, Bath; King’s College, London; University of Manchester; Brompton Hospital, London; Royal Free Hospital, London; Salford Royal Hospital (Hope Hospital) and Addenbrooke’s Hospital, Cambridge. A full list of active and completed grants, together with grant reports can be viewed on our website: www.raynauds.org.uk

Fundraising Page 11

‘COOL MILLION APPEAL’ REACHES £320,000

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 3

Welcome Dear Readers, Anne H Mawdsley MBE

A huge thank you to everyone who responded to our brief questionnaire which was enclosed with the last issue. You have no idea how just a few minutes of your time can make a difference. Your comments and concerns are taken onboard and this information will be passed onto healthcare professionals. The patient's voice is what it is all about - not what is in text books but what happens in real life, how this affects you and impacts on your daily quality of life.

Cool Million

UK Scleroderma Study Group

Text Giving

We are getting there but there is still a long way to go to reach our target of one million pounds by 2012. The total at the time of going to press is £320,000 This is entirely due to our members, their friends and relatives, voluntary organisations, charitable trusts and companies who have made donations or organised fund-raising activities. Thank you all so much for supporting this appeal. If you haven’t already approached your local voluntary organisations such as Lions Clubs, Rotary, Ladies Circle, Inner Wheel etc. then please think about doing so. We can help you to prepare a suitable letter if you wish.

In July and August I attended meetings organised by the UK Scleroderma Study Group. This group is made up of health professionals who are experts in the field and this year patient representatives were invited to participate. The aim of the working groups being to make recommendations for patient care and treatments for various aspects of scleroderma. These include treatments for primary and secondary Raynaud’s and digital ulcers and also gastrointestinal complications in scleroderma. I have found this to be an invaluable experience knowing that patients are being listened to. I feel that these discussions offer hope for the future.

You may be aware of how to donate to charity by text. This seems to be a good way of getting friends and relatives to make a donation. All one needs to do in order to donate to the RSA via a mobile phone is to text COOL22 followed by the amount that you want to donate and send it to 70070. For example, if you wanted to donate £5 you would text COOL22 £5 to 70070. The donor will receive a text message receipt and the chance to add Gift Aid if a UK tax payer.

Issues affecting us all We are watching closely the proposed changes to Disability Living Allowance (DLA) which the government are intending to replace with a Personal Independence Payment. The consultation ended on 1st August and we will update you on our website and in a future issue of Hot News. Other issues which we are involved in include commissioning for Rare Diseases, prescription charges and heating allowances, all of which could have a direct impact on people with Raynaud’s and scleroderma. Being on the Patient and Carer Network and the Joint Speciality Rheumatology Committee at the Royal College of Physicians in London, has provided me with an ideal opportunity to keep abreast of what is happening in the Health Service nationwide. I am also in a position to ask questions and offer opinions on behalf of our members to rheumatologists, who have expert knowledge and influence on matters of importance.

CEO & FOUNDER

Anne H Mawdsley MBE

PRESIDENT

Prof. Dame Carol Black DBE

TRUSTEES

Barry Hicks, Joanna Kaddish Kevin Lafferty, Beverley Myers, Jeremy Pearson

Annual Report & Accounts

The RSA’s Annual Report and Accounts for 2010 are now available. To request a copy please write to Head Office enclosing 3 first Your input class stamps to cover the cost of postage. You really can help to make a difference by Alternatively, they can be viewed on our returning the questionnaire which is on the website. reverse of the address label sheet which comes with your Hot News. This issue Meetings and Conference requests your experiences of how digital I very much enjoyed meeting so many of ulcers, calcinosis and lung problems affect our members at the Leeds, Newcastle and the lives of those with scleroderma. To date Cannock regional meetings. The Annual we have covered products, Raynaud's Tips Conference in Chester will provide another (see page 3) swallowing and bowel opportunity to put names to faces and as problems. As a result of your responses we people have said, it is good to be able to have put together leaflets on swallowing talk to others in a similar situation. A meeting will be held in Cardiff on the 19th and bowel problems. Having experienced many of these GI October. Many lifelong friendships are often problems myself I feel passionately that made through organisations such as ours much more needs to be done to improve and my life has been enriched by the lovely treatments and therefore offer a better people I have been fortunate enough to get to know over the years, either in person or quality of life for patients. on the telephone. If you would like a copy of these leaflets or the latest one on “Going into Hospital” please send an A5 SAE or two 2nd class stamps with your request and please do indicate which leaflets you are requesting.

Enjoy your summer!

Anne

PATRONS

MEDICAL ADVISORS

Sharron Davies MBE

Prof. J Belch; Sister S Brown

Roger Jefcoate CBE

Prof. C Denton; Prof. A L Herrick

Veronica, Lady Piercy

Dr. C Lovell; Dr. R Macdonald

Nick Ross

Prof. P Maddison; Prof. R Moots

David Wilkie MBE

Prof. D Scott; Prof. A Silman Dr. D Veale

HEAD OFFICE: 112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Website: www.raynauds.org.uk Charity Reg. No. 326306 DISCLAIMER: The Association does not accept responsibility for the information contained in the newsletter, either medical or the advertised products. Remember what suits one person does not necessarily suit another. If in doubt consult your doctor before trying any suggested remedies.

In w in t with Ela

I al can cus Tin

Inv I a apo con Jen

Ah lea tha sum con wh Sus

Par so go so Ma

It is ple and (wh wo eve Sus

Ma tele imp han red Yol

Blo min wh CC

Yog flex also An

I fin Kat

Acc you no Sus

to ood ake r to s to hat 70. £5 The eipt tax

for opy irst ge. our

y of and ual her as e to A 9th ten urs vely get or

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 4

Raynaud’s Top Tips for Coping with Raynaud’s In winter I keep gloves on several radiators in the house, so I don’t forget to go out without them and they’re lovely and warm. Elaine Benson, Merseyside I always buy a size larger in footwear so I can put a couple of insoles inside to cushion the feet when walking. Tina Sykes, Nottingham Invest in vests and wear layers of clothing I also find cardigans useful. Never apologise for having any medical condition! Jenny Miller, Co. Durham A hot bath in the morning helps me to at least start the day with warm hands. After that fingerless mittens and gloves in summer and winter. My doctor told me to contact him if a finger or fingers remain white for more than 30 minutes. Susan Love, France Park your car in the sun whenever possible so it is warm when you get in. When you go shopping, plan your route in advance so you spend less time outside. Margaret Bolton, Co. Down It is important to plan your day and allow plenty of time to do what you need to do and never rush. This helps to avoid stress (which can cause an attack). I know this works but it is difficult to put into practice, even though I am retired! Susan Checker, Midlothian Massaging my hands while I watch the television helps to ease stiffness and improves my circulation. Stress balls or hand exercisers are great and also help to reduce stress. Yolande Raven, Germany Blood sugar levels are very important. If mine get too low my hands tingle, turn white and go numb. C Chamberlain, Lancs Yoga has helped me to keep supple and flexible and has improved my circulation. I also keep active with a rambling club. Ann Atkinson, Dorset I find doing Tai Chi really helps. Katrin Bell, Herts Accept what you can’t do, take joy in what you can do, and your health problem will no longer rule your life. Susan Cameron, Glasgow

Honey at breakfast has helped me. Ginkgo Biloba (one a day with breakfast) also helps, along with plenty of exercise and wearing silver gloves, which I purchased from the RSA. M E Roberts, Flintshire If I feel toes or fingers getting cold I do a few star jumps and run on the spot to boost my circulation. Hilda Joy Jones, Oxfordshire Always walk on the sunny side of the road! Charlotte Fricker, Bedfordshire Every morning I make a hot drink with the juice of 1 fresh lemon and about 5cm of root ginger, grated and put in an infuser. This helps to keeps me warm. You also need a ‘thick skin’ to cope with people saying, “you can’t possibly be cold!” Janet Jackson, Norfolk

It has been suggested by consultants that it can help a GP if you take a photograph of your hands during a Raynaud’s attack as very often when you first explain your symptoms, it is in a warm doctor’s surgery. Some kitchen advice: get someone else to wash vegetables and salad if you can, and if not, wash them in warm water. Cutlery with plastic or wooden handles is a must, and a hot cooked potato in foil makes an excellent handwarmer! Debbie Pentland, Hampshire When shopping, try using a shoulder bag rather than one with handles, and make sure you have some extra layers to put on when walking in the freezer or fridge aisles. Margaret Schofield, Lincoln When I do have to write (and I find typing much easier), I use a fountain pen or roller ball pen. The ink flows more easily so you don’t have to grip them as tightly or press down as hard. Camille Cline-Cole, W. Midlands Whenever I have a cold drink, I put it in a wine glass so I don’t touch the cold glass. Helen Starling, Staffs I have tried everything for dry hands and nails, but the best by far has been cocoa butter with vitamin E, which is available in most pharmacies. S Chorley, Hampshire

Wear insulating gloves before going into the fridge or freezer. Alan Smith, Cheshire Overnight, keep your clothes, especially gloves and hat in an airing cupboard or somewhere warm so they are a nice temperature in the morning. Lesley Barnes, W. Sussex My doctor prescribed Glyceryl Trinitrate patches for my cold, numb and achy feet. I found these 24 hour patches very helpful for keeping my feet warm. M Harmes, Kent Use warm air hand dryers in public places to warm your hands when out shopping. Elaine Humbles, Ayrshire I have found using a wax bath very useful and since having it I have not had any finger ulcers. Pauline Goodchild, Sussex Increase in heating and water rates puts pressure on an OAP's income. To avoid this, I find a thermos flask filled each day with hot water useful for washing and warming my hands. This way, I don't need to keep running hot water. Mrs Medley, E. Sussex Always wear bed socks at night and wristwarmers in winter. Use a large money purse which is easier for extracting coins. In friendly shops ask the assistant or till operator to help. J Moore, Cornwall Hawthorn berries are thought to act as a tonic for the circulation. You can buy the berries from health food shops, or alternatively drink as a tincture diluted in water. Rachel Brown, Merseyside Wear a head scarf when going on a plane or places where there is air conditioning. Anna Thompson, Surrey

The above tips are a selection taken from those sent in to the RSA following the request in the last issue of Hot News. Many thanks to all who contributed. We hope that you find some tips which may help you to cope with Raynaud’s.

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 5

Doc Spot Your Questions Answered Professor Chris Denton

FRCP

Consultant Rheumatologist, Royal Free Hospital

I suffer from primary Raynaud’s which mainly affects the circulation in my fingers. Last July I was diagnosed with two serious blood disorders. Essential Thrombocythemia – increased blood platelets (659 last blood test) and Idiopathic Sideroblastic Anaemia (Haemoglobin level) – (8.6 last blood test). I am taking medicines to try and regulate the situation including daily aspirin, hydroxycarbamide and pyridoxine. My Raynaud’s symptoms have been worse over the last few months. It has been suggested by my GP and pharmacist that I should report my condition to the Association and to ask whether there might be any inter-relation between my blood disorders and Raynaud’s. There is a well established relationship between platelet disorders and vasospastic conditions such as Raynaud’s or related disorders such as erythromelalgia. Platelets contain many substances that affect blood vessel constriction and this can lead to Raynaud’s. One such substance is serotonin. In addition platelets are important in forming blood clots and this can obstruct small blood vessels and worsen Raynaud’s. Sometimes treatments that reduce platelet stickiness can be helpful, such as aspirin but this needs to be discussed with your haematologist. There is no clear relationship between anaemia and Raynaud’s. I received 5 days iloprost last month. I had a Trigeminal Neuralgia attack on the right of my head last week and then yesterday my left thumb went completely numb then very red and swollen then black with a bruise. Today the bruise is in a ring around my thumb but I have blood supply to the tip. My left hand is pretty cold and tingly. I feel generally unwell. I have had severe Raynauds for 31 years and Erythromelalgia for 5 years and Arthritis in fingers and toes, back and neck. I had an MRI which showed tonsillar ectopia of 5mm. The latter symptom has been largely ignored by the medics. I would like to know how much if any of my symptoms

are related. My GP has not been much help except to refer me to ENT. Any advice would be appreciated and also a renewal form for my membership as I feel isolated with all that seems to be happening to me. If Raynaud’s is associated with scleroderma or another connective tissue disease (i.e. secondary Raynaud’s) then these conditions can be associated with neuralgia and so the iloprost may not be relevant. Although iloprost opens up blood vessels and reduces platelet stickiness (see previous question), that might increase the risk of bruising as you describe. It is important to remember that iloprost remains in the blood stream for only a matter of hours at most and so long term persistent side effects are not really a problem. If the symptoms worsen they will require further investigation and you should see your doctor. I have difficulty with my eyesight. My long distance is good but I have difficulty changing from short to long distance and vice versa. My doctor agreed that Raynaud's could be the cause. They have suggested a cataract operation but I do not want to have an operation unless really necessary. I wonder if you have heard of any previous cases of circulation in the extremities affecting the eyesight in this way? Raynaud’s phenomenon (RP) describes increased sensitivity of small blood vessels to cold but unless it was associated with a connective tissue disease such as lupus (SLE), dermatomyositis (DM) or Sjögren's syndrome it is unlikely to contribute to any visual difficulties related to changing from short to long distance. Can Raynaud's cause horizontal ridges on toenails? There is no specific association between RP and ridges but severe RP can make nails grow poorly due to poor blood supply to nail bed and also can increase frequency of nail infections.

My left foot is permanently swollen. The GP says that this is because the blood vessels have been damaged over the years with chilblains. Is this part of Raynaud’s? Blood vessel damage can lead to swelling due to leakage of increased amounts of fluid into the tissues but there are many causes. Sometimes drugs that help Raynaud’s such as nifedipine can lead to swollen legs but it is important to exclude other problems such as arthritis or obstruction to the veins in the legs. This is especially the case if only one foot is swollen as it is more likely that there is a local cause. Your doctor can advise if you need any further investigations. I have just been diagnosed with Raynaud's in my feet, making it difficult to walk any distance. I am due to go on holiday shortly and have heard that flying causes more risks. Is there any advice about this? Flying long haul, for more than 4 hours, has been associated with an increase risk of blood clots on the legs. So you should drink plenty of water, try and keep moving your ankles and feet during the flight and you may wish to consider wearing flight socks. There is no specific problem related to Raynaud’s in flight other than keeping as warm as possible - it can get quite cold with the plane’s air conditioning. I have suffered from Raynaud’s since the age of 5 and am currently pregnant for the third time. My first child was born at term but I suffered pre-eclampsia and a placental abruption and my second daughter was born 12 weeks early due to placental problems. I have read that Aspirin may help prevent these issues and have been told to start this by my consultant. I wondered whether any information is available. Raynaud's is much more common in women than men and this may partly reflect hormonal effects. In pregnancy Raynaud's usually improves from the first few weeks but often worsens again 3 to 4 months after delivery. Although aspirin has not been shown to improve Raynaud's it is usually recommended in pregnancy in cases where there are risks of poor placental blood flow. I would certainly recommend following the advice of your obstetric doctors.

I h the nee wh loc Dia me ant cre onl dis dih giv my If s eas

Vul num to a is con scle be con are scl scl spe oth

Are trea with bee

Co wh pro ant num is and app of w col scle effe be

I h ma pro can also fati

Ca occ and for CR

The ood the of

ing of any elp d to ude or s is is sa you

ud's any rtly ore

urs, risk uld ing and ght em han get air

the the erm a ond e to hat and my any

in rtly ncy irst o4 irin ove in sks uld ice

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 6

Doc Spot Doc Spot Continued.... I have been diagnosed with vestibulitis of the vulva area. The intense irritation and the need to visit the toilet frequently means that when going out I have to make sure of the location of public toilets. I also have Diabetes 2 which is controlled by medication. I have been prescribed various antibiotics and creams including Gynest cream but to no avail. At the moment the only relief I can get from this extreme discomfort is to take paracetamol or dihydrocodeine tablets. These however only give me temporary relief. Is it possible that my scleroderma is a cause of my complaint? If so is there any treatment that I can take to ease my symptoms? Vulval pain can occur in association with a number of medical conditions. It may be due to an irritability of the nerves and sometimes is part of a more generalised neuralgia condition. It certainly can be due to scleroderma but other causes should also be excluded especially any local medical condition or inflammation. In addition there are some related condition such as lichen sclerosis that may occur more often in scleroderma. Sometimes advice from a specialist pain team can be helpful once other causes have been excluded. Are you aware of colchicine being used to treat calcinosis and inflammation associated with scleroderma? I have heard that it has been used to treat gout. Colchicine occasionally is used in calcinosis when there is a prominent inflammatory process. Likewise methotrexate and other antirheumatic drugs are helpful in a small number of cases. However most calcinosis is not associated with major inflammation and so these approaches are not appropriate. In gout there is direct activation of white blood cells that can be blocked by colchicine but this is not a feature of scleroderma. Colchicine has potential side effects including diarrhoea and so needs to be used carefully. I have suffered from CREST syndrome for many years with the usual associated problems. Could you please tell me if you can get calcium deposits in the brain and also if the crest would make me feel very fatigued. Calcification under the skin (calcinosis) occurs in some patients with scleroderma and is especially associated with the limited form of the disease, sometimes called CREST. It is not usually present in the

internal organs and especially not in the brain. It appears to occur mostly at sites of pressure or injury and inflammation such as the fingertips, elbows or around large joints. Unfortunately the cause is not known and treatment is difficult. More research is definitely needed. Fatigue is a common feature of many rheumatic diseases and may reflect muscle weakness, anaemia or inflammation but can also occur without any other explanation. Exercise programmes can be helpful and some patients find medications such as hydroxychloroquine (plaquinol) beneficial but it is another difficult but not life-threatening aspect of scleroderma like calcinosis that requires better understanding to improve treatment. In 2007 I had 3 months of continuous diarrhoea with little warning. Colonoscopy and biopsies were taken - Congo red stain test revealed collagenous colitis. I was told to treat this with Budesonide capsules if it recurred - just once so far and recovered with Budesonide. Also told to avoid taking NSAIDs combined with a proton pump inhibitor. The trouble is that my rheumatoid arthritis (RA) is steadily worse without antiinflammatories. I now take Co-codamol to help the RA - constipation not too bad. I always have Budesonide standing by, just in case and use Ranitidine instead of Omeprazole. I wonder, is collagenous colitis a thickening of the gut due to scleroderma? Do NSAIDs help to cause the problem? Collagenous colitis is a very specific type of inflammation of the large bowel that is associated with a number of diseases. Like scleroderma there is increase in collagen deposition, perhaps in response to inflammation, but it is in specific sites in the lining of the bowel that are distinct from those seen in scleroderma. Although there are a few reports in the medical literature of the two conditions occurring together this seems to be uncommon. What is the difference between methotrexate and mycophenolate mofetil and how do they work in scleroderma? Methotrexate (MTX) and mycophenolate mofetil (MMF) are drugs that suppress the immune system and appear to be beneficial in scleroderma to improve skin disease and lung fibrosis. It is possible that other aspects of the condition are also helped and both drugs are amongst the standard treatments for cases of scleroderma that are severe or progressive. Apart from scleroderma, both of these agents are also in use for other diseases such as arthritis (MTX) or to

prevent organ transplant rejection (MMF). They work by blocking the metabolic activity of white blood cells. The goal is to reduce the immune system overactivity that is a feature of scleroderma. They are powerful drugs that have side effects and require careful monitoring, including blood tests, but are considered safe. It is not clear which drug is better and studies are ongoing to try and find this out, including a large European study termed ESOS (European Scleroderma Observational Study). I have problems with incontinence and an SNS implant has been suggested. Is this likely to work in scleroderma patients and if so how long does it take to have an effect after the implant? Incontinence is unfortunately a common symptom of scleroderma and results from the effect of nerve damage and fibrosis on the muscle at the lower end of the bowel. It can be aggravated by damage from childbirth or other related medical conditions such as a prolapse. The sacral nerve stimulator (SNS) is a medical device that passes a small electric current into the muscle that normally maintains a “good seal” at the lower bowel (anus) and can help to treat incontinence. Before having this procedure it is important to assess the bowel carefully, treat other aspects of scleroderma such as diarrhoea and usually a temporary stimulator is tested first to assess benefit. Later a permanent device may be considered if the temporary SNS was helpful.

Have you had an SNS? SNS stands for sacral neuro stimulator, which is a small computer connected by wires to the sacral nerve and implanted into the patient’s buttock. The aim is to stimulate the nerves and muscles to work more effectively to help people who have incontinence problems. Due to the fact that we are all different and have differing symptoms, it doesn’t work for everyone so what we would like to investigate is why it works in some cases and not others. Some members have indicated that they have had an implant and we intend to follow this up, so if you have experience of this procedure, I would very much like to hear from you. The implanted computer has 160 programmes so there may just be one which works best for us. Anne

If you have a question you would like Professor Chris Denton to answer, please send to Head Office 5

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 7

Scleroderma Scleroderma - Systemic Sclerosis (SSc) Scleroderma, although uncommon, is the most deadly of the connective tissue diseases. It is often a disabling and disfiguring condition. Management can be maximised and prognosis improved by early diagnosis and referral to a specialist centre. Although there is still no cure for SSc, there are treatments available that aim to arrest the disease process, both in the skin and internal organs. Between 18 and 20 new cases per million of the population are diagnosed each year. There are an estimated 5-8,000 sufferers in the UK although the precise number is difficult to assess. Scleroderma is now much better understood. The most important distinction is between localised and systemic forms of the disease. Both types are heterogeneous, and systemic forms in particular require expert assessment to determine the subset, stage and pattern of complications, together with the presence of features of any other autoimmune rheumatic disease (overlap syndrome). Children may also develop the disease and this requires special attention. Early referral is critical because childhood localised SSc can be associated with growth defects.

Scleroderma Subsets The major sub-types of Systemic Sclerosis are based on the extent of skin involvement and are called Diffuse Cutaneous SSc (dcSSc) and Limited Cutaneous SSc (lcSSc) - previously called CREST. These two types have different disease progression and organ involvement. Both types of patients need to be under specialist care and should be referred as quickly as possible.

Diffuse Cutaneous SSc • Onset of skin changes (puffy or hidebound) within 1 year of onset of Raynaud’s • Presence of tendon friction rubs, arthritis and myalgia • Early and significant incidence of interstitial lung disease, oliguric renal failure, myocardial involvement and diffuse gastrointestinal disease • Antitopoisomerase-1 (Scl-70) antibodies (30% of patients) NB. Risk of renal failure in this group

Limited Cutaneous SSc • Raynaud’s Phenomenon long standing • Skin involvement limited to hands, face, feet, forearms and lower part of legs • A significant (10-15 years) late incidence of pulmonary arterial hypertension (PAH), skin calcifications, telangiectasia

and gastrointestinal involvement. Some lung fibrosis • A high incidence of ACA (70-80%) NB. Though the limited form is generally more benign, PAH is a considerable risk. In addition, around 20% of cases of SSc have features of another connective tissue disease and these cases are termed overlap syndromes. It is important to recognise these as the other features such as lupus, arthritis or myositis may require treatment and this may have to be modified compared with patients that do not have scleroderma. For example, high dose corticosteroid therapy should be avoided due to an increased risk of scleroderma renal crisis. NB. If the patient has rapidly changing skin or digital ulcers, refer on an URGENT basis.

There are ongoing trials of newer drugs that may be more specific for scleroderma and that might offer potential for treating fibrosis

Treatment Current approaches to disease modifying therapy include cyclophosphamide, mycophenolate mofetil and methotrexate, as these agents are believed to benefit skin involvement and other aspects of the disease. Such treatments are generally considered for diffuse cutaneous SSc that is active, within the first 3 years from onset. There are ongoing trials of newer drugs that may be more specific for scleroderma and that might offer potential for treating fibrosis. Other priorities include treating inflammation and vascular aspects such as Raynaud’s phenomenon and its complications such as digital ulcers. Bosentan may be considered in patients with severe digital ulcer disease and has been shown to reduce new digital ulcer formation. Another major focus of management is on organ based complications such as kidney, lung, gut and heart disease. It is well established that scleroderma renal crisis must be treated with ACE inhibitor drugs. Patient awareness of the risk of high blood pressure in scleroderma is also critical to help early diagnosis and treatment. Lung complications of scleroderma, including pulmonary hypertension or interstitial fibrosis, are a major cause of mortality and morbidity. Lung fibrosis must be treated when it is severe or progressive and there is now confirmation from clinical trials of the

benefit of immunosuppression, although this may not be appropriate in all cases. Pulmonary hypertension is an important and treatable complication of scleroderma and has benefited from major advances in drug therapy, including the availability of several oral treatments that are of proven benefit. Regular screening with lung function tests and echocardiography is strongly recommended so that treatment can be started as soon as the diagnosis is made. Cardiac involvement in scleroderma remains a major challenge and is the focus of current research to improve detection and treatment. The gut is the most common organ involved. To improve motility in the oesophagus,domperidone (Motilium) should be tried. To treat acid reflux, ulceration and scarring of the oesophagus, the proton pump inhibitors, omeprazole (Losec) and lansoprazole (Zoton) are good. Additionally, a variety of antacids such as Gaviscon, Magnesium Trisilicate and Aludrox may be tried. These should not be taken at the same time as other drugs as they may impair absorption.

Long Term Management - A Major Focus Long-term management of the disease is now a major focus. Treatment by more integrated centres that can provide expert, holistic care, coupled with newer medicines, has led to improvements in quality of life for patients. Due to a focus on the management and treatment of scleroderma, not just life expectancy, but quality of life has improved for patients. The Raynaud’s & Scleroderma Association works tirelessly to help patients live their lives to the fullest extent possible. As well as focusing on routine screening of established scleroderma cases for complications that may need additional specific therapy, there is also a focus on earlier diagnosis. It is important to detect cases as early as possible and this includes appropriate testing of cases of Raynaud’s phenomenon that may be developing early scleroderma or a related connective tissue disease. This is an important area of ongoing research involving collaborations between European and UK scleroderma centres. The above text has been taken from the new Health Professional Booklet written by Prof Chris Denton. To request a copy please send 2 x 2nd class stamps to the RSA.

Scl tha stu the mo how pro

As dig deb the sho imp to fing inte the esp con con bec stra dev bre

‘R

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 8

Digital Ulcers Digital Ulcers in Scleroderma

ugh . ant ma s in of ven ung is ent s is ma cus ion

gan the um) ux, us, ole are ids ate uld her

e is ore ert, wer in

and life ved ma elp ent ine ma eed oa t to this of be ted an rch een

the ten opy the

Many people with scleroderma develop ulcers on their fingers and toes, so called 'digital' ulcers. A European study suggested that this was as many as 40%. In Salford, we have recently completed a study of finger ulcers funded Prof Ariane Herrick by the Raynaud's & Scleroderma Association and we found that of 148 people who participated in the study, 15 (10%) had at least one ulcer at the time of clinic attendance, and many more had had ulcers in the past. So however you look at it, this is a common problem in scleroderma. As many readers therefore already know, digital ulcers can be extremely painful and debilitating. Our recent study confirmed the findings of other researchers and showed that people with finger ulcers have impaired hand function. Finger ulcers tend to occur at two main places: (1) at the finger-tips and (2) over what are termed the interphalangeal joints (the small joints of the fingers). The ulcers over joints occur especially in people who have contractures of their fingers - a finger contracture means that the finger is bent because of scleroderma and cannot fully straighten. A pressure point therefore develops over the joint and the skin can break down to form an ulcer. Ulcers of the

toes are less common, but can also be a big problem. It is important to prevent toe ulcers happening in the first place by being very careful with the feet, for example not wearing shoes which might rub and cause an ulcer. A chiropodist (podiatrist) will be able to advise on footwear. The key point is that if you have an ulcer you should seek medical advice as soon as possible. This is so that effective treatment can be commenced without delay. There are several different aspects to the treatment of digital ulcers. Many ulcers are infected, and treating the infection will then help the ulcer to heal. Ulcers are very painful, so strong painkillers are often required. Local wound care by skilled nurses is also very important. A key part of treatment is to improve blood flow to the fingers (or toes) to maximise the chance of the ulcer healing quickly. The best way to do this is often to give intravenous (into a vein) infusions of a drug called iloprost. Iloprost works by widening the blood vessels and is usually very effective. However, because it is given intravenously it requires hospital admission. Sometimes surgery may be required, although this is only in the minority of cases. There may be a small collection of pus, or some damaged tissue, which needs to be removed by a procedure called 'debridement' which essentially means 'cleaning up' the ulcer. Very rarely more complex surgery is required.

Occasionally there may be an area of calcinosis underlying the ulcer - such ulcers are often very difficult to treat and surgery may be required to remove some of the calcinosis. It is important to emphasise again the importance of early treatment. Sometimes infection in digital ulcers can spread to involve the underlying bone (this is called osteomyelitis), and the earlier treatment is given, the less likely this is to happen. Osteomyelitis can be difficult to diagnose. If your doctor is not sure if the bone is infected he/she may arrange a magnetic resonance (MR) scan which can help to demonstrate bone infection. Although digital ulcers can be a very major problem and very difficult to treat, the good news is that new treatments are being researched. A drug called bosentan is now available to prevent new ulcers in people with scleroderma who have recurrent ulcers, although not all patients benefit. Increased collaboration between doctors with an interest in scleroderma, across many different countries, is providing an infrastructure to examine possible new treatments. Therefore we are reasonably confident that more effective treatments will become available over the next few years. Professor Ariane Herrick Consultant Rheumatologist Salford Royal NHS Trust See questionnaire on digital ulcers with this issue of Hot News

A request from the Royal Brompton for study volunteers ‘Raynaud’s phenomenon affecting the pulmonary blood vessels in scleroderma’ Pulmonary hypertension (raised blood pressure within the arteries of the lungs) affects many people with scleroderma and often requires specialised treatment to minimise the risk of worsening breathlessness and heart damage. In the same way that Raynaud’s phenomenon (spasm of the small arteries, particularly in response to cold temperatures) may affect the fingers and toes, it is suspected that spasm of the arteries within the lungs may also occur in response to cold temperatures. This ‘pulmonary vasospasm’ may result in increased breathlessness in cold weather. At the Royal Brompton Hospital, we have particular interest and expertise in scleroderma related lung disease and we are currently looking at new ways to diagnose pulmonary vasospasm. In the past, testing for pulmonary vasospasm has been difficult and unreliable, and since 2010 we have been using a specialised breathing test and CT scan to assess for pulmonary vasospasm. In this study, we are comparing healthy volunteers to volunteers with scleroderma who develop symptoms of breathlessness in cold temperatures. The study involves a single visit to the Royal

Brompton Hospital, where baseline breathing tests and a CT scan is performed. Volunteers will then be asked to breathe artificially generated cold air, and the breathing test and CT scan is then repeated to assess for changes. The study visit will take approximately 4 hours in total, with a break between testing. We are asking for volunteers with scleroderma who develop breathlessness in cold temperatures who may wish to take part in the study. If you would like further information, or would like to take part in the study and want to know if you are eligible, please contact the study co-ordinator Dr Greg Keir. Participants will have their travel costs covered. E-mail: G.keir@rbht.nhs.uk Phone number: 020 7352 8121 (Extension 4405 or extension 8018) The lead investigator for this study is Professor Athol Wells, and the study has received ethics approval from the South East London Research Ethics Committee (REC approval number 10/H0808/120).

the

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 9

News Regional Meetings Leeds

Newcastle

LOCAL CONTACTS Burton on Trent, Helen Nutland

01283 566333 Ext. 5032

Bristol, Margaret Goff

01454 310225

Cumbria, Ruth Randall

01229 835727

Eastleigh, Kathy Allen

02380 610678

Fife, Rose Bevan

Knaresborough, Tony Overend

Dr Francesco Del Galdo and Dr Maya Buch

Dr Maya Buch, Consultant Rheumatologist at Chapel Allerton Hospital and Dr Del Galdo, Senior Translational Research Fellow at St James’s University Hospital gave very informative presentations at our regional meeting in Leeds. It was good to meet so many members on the night.

Cannock

Smiling faces at the Cannock meeting!

This meeting was enjoyed by all and proved to be a very successful evening with members having an opportuntiy to hear Dr Tom Sheeran speak and answer questions from the delegates. We are most grateful to Dr Dr Tom Sheeran Sheeran, for giving up his time to join us at what would now appear to be an annual meeting!

Nurse Advice Lines A list of nurse advice lines has been published in every issue of Hot News. However, in this issue we ran out of space. Should you need any of the numbers and haven’t kept your previous newsletter, just give us a call. These advice lines are not a replacement for care by your GP but very often it helps to talk to a nurse who can listen and offer advice. They are not intended for use in an emergency.

01382 552272 01423 862551

Manchester, Gill Holden Professor Jaap van Laar and Dr John Allen

The meeting at the Freeman Hospital in July was well supported. Our thanks to Professor van Laar and Dr John Allen who were the speakers for the evening. Following his presentation, Professor van Laar launched his appeal for sponsorship for running in the Great North Run in October for the RSA. A tin was passed around and £70 started the ball rolling. We are most grateful to Professor van Laar for taking part and wish him well with his training. His website for donations is www.justgiving.com/Jaap-van-Laar and we hope that he will be well supported by our members.

Many thanks to everyone who generously provided raffle prizes for these meetings which raised a total of £210 towards the ‘Cool Million Appeal’

01942 877259

North East, Jessie Pickering

01388 527840

N. Ireland, Patience Bradley

02890 592370 Mobile: 07966 416553

North Wales, Kate Owen

01492 515834

Oxford, Melanie Bowen

01865 515067

Rickmansworth, Marilyn York

01923 286780

Shipley, W Yorks, Bev Myers

07903 448038

Suffolk & North Essex, Jacky March

01473 717206

Surrey, Fay Collings

01737 762005

Worcestershire, Shirley Lynch

01386 553392

Cardiff Meeting

Contacts Wanted

We are holding a regional meeting at the Premier Inn Cardiff North on Wednesday 19th October. Invitations will be sent out to members in the vicinity but all members are welcome to join us. Just let us know by contacting the RSA on 01270 872776 for further details.

Denise Kay from Skegness has both Raynaud’s and scleroderma and would like to hear from other people in her area. Please write or email Denise via Head Office and we will forward your correspondence.

Important Notice Flu Vaccine

The cold is more than a nuisance for sufferers of Raynaud’s and chilblains. Avicenna (who own Balmosa chilblain cream) have produced a survey to find out how our members are affected and cope with the conditions. The feedback will be collected with a short online feedback form. The survey will not collect any personal information so you would remain completely anonymous. The results will help improve understanding and research. If you feel the cold and would like to take part in this survey, visit: www.surveymonkey.com/s/feelingthecold

It is recommended that all people with chronic systemic diseases have the flu vaccine. If you have systemic sclerosis (not the localised forms of scleroderma), you should make sure that you receive an annual flu vaccination. Do check with your GP once the vaccines are available in the autumn.

I th rea rem to h of 1 in N ide Litt par go Ray ap but this trut By beg aci my ulc Du ah the ilop hos

Feeling the Cold?

“I sud an wa co wh like “I rec sen we ac ad yea “I s an Th ch of Th blo few rem gin

oth ike ea. fice e.

for ns. ain out ope be rm. nal tely ove the this

old

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 10

Members’ Stories Steph’s Story I think I was about six years old when I first realised something was wrong and I remember the GP giving me some tablets to help improve my circulation. At the age of 11, I was referred to the Queens Hospital in Nottingham and it was then that I was identified as having Raynaud's. Little was known about it although my parents had an awareness as they used to go swimming with someone who had it. Raynaud's was considered by many to be a psychological issue rather than physical but as time went on it was clear to me that this conclusion couldn't be further from the truth. By the age of 15 scleroderma was beginning to manifest itself in the form of acid reflux and by the time I had reached my twenties I was suffering from ulcerations and infections on my fingers. During my early 20s I lived and worked at a holiday park in Devon and it was whilst there that I underwent a treatment called iloprost, which involved five days in hospital. I didn't notice a great deal of

improvement and just seemed to get a lot of headaches. The Raynaud's and scleroderma have stayed relatively manageable with constant monitoring and regular treatment ever since. It's day to day life that constantly throws up challenges though. I tend to drive everywhere with the luxury of a heated car seat and the last two winters have been particularly hard to bear given the plummeting temperatures. When my daughter and husband are outside making snowmen I have to stay inside and watch. That's not fun! That said, summers can be often be more difficult as you really don't fit in when going out wrapped up and everyone else is dressed for the sun. I have a regular routine of treatments including iloprost once a year, a visit to a skin clinic once a month and I take drugs for my acid reflux. My lungs took a dip last November and it was suggested I lose a bit of weight, which seems to have worked.

I found out about the Raynaud's & Scleroderma Association (RSA) in the mid 80s and they have proved very helpful in providing advice and tips on how to mitigate the effects. They have Steph Chadwick recently launched their own page on the HealthUnlocked website and that is proving to be a very good forum for sharing experiences about these conditions. I am pleased that the medical profession are finally sitting up and taking note of these two closely related illnesses. Doctors are finally listening to what their patients are saying rather than just reading text books and the more dialogue that takes place the better it will be for everyone. Steph Chadwick, Nottingham

A Teacher’s Lesson Teacher Tom Waltham from Huddersfield has proved to be a real class act when it comes to dealing with his mild Raynaud's but he's keen for his Tom Waltham experience to be a lesson to others. “I was walking to college one day and suddenly noticed I couldn't feel my fingers and toes. It was a warm day so it clearly wasn't the weather and when I got to college I noticed my fingers had turned white. They then started tingling almost like pins and needles. “I immediately went to see my GP who recognised it as Primary Raynaud's and sent me for a couple of tests. Luckily there were no underlying conditions. It was just a case of circulation to my hands and feet,” added Tom who has been teaching for four years and hails originally from Hull. “I started to wear gloves around the house and still do to this day when I'm at work. The doctors put me on Adalat Retard, a channel blocker with the active ingredient of Nifedipine, but I blew up like a tomato! They then prescribed another channel blocker in Amlodipine which I took for a few years. I then carried on taking herbal remedies such as ginkgo biloba and ginger extract which I still take to this day

during the winter months. I combine this with wearing gloves and heating aids recommended by the Raynaud's & Scleroderma Association (RSA). “The RSA was very supportive and helpful and answered any questions I had about the condition. Knowing that there were other people out there experiencing the same symptoms was a great relief, especially as a teenager growing up. I have since discovered that Raynaud's is very common in teenagers. My GP seemed to recognise the condition but looking back in hindsight I'm not too sure he knew all that much. I had another bout of Raynaud's when I was at university in Huddersfield and felt my GP there knew a lot more about it. They said it was highly likely that I'd grow out of it in my late twenties but was warned it could come back with a vengeance in later life. For a condition that affects so many millions of people in the UK you would have thought there would be more knowledge about Raynaud's,” added Tom who currently teaches at a primary school in Dewsbury. Experiencing Raynaud's during his university years did have some impact on his academic studies as Tom confirmed: “I seemed to be affected a couple of times a week with painful cold hands lasting around 20 minutes. The attacks stopped me being able to type at a computer. Playing the violin or piano as part of my studies proved near impossible during an

attack. “People often used to ask why I wore gloves indoors and I simply had to explain that I had Raynaud's. “I was lucky in the sense that I dealt with the issue quickly and was diagnosed almost immediately. The medical advice I received combined with the medications and the input of the RSA put me in a perfect position to cope with what could have been a debilitating condition,” concluded Tom. If there's ever a lesson to be learnt from dealing effectively with Raynaud's then Tom is the perfect teacher! This article was adapted from Tom’s story which was published in the Huddersfield Daily Examiner

Writing Competition The RSA is running another writing competition. All you need to do is write a short story about your experience of living with Raynaud’s and/or scleroderma. Ideally, we would like an uplifting story but realise that this is not always possible. Entries should be no more than 750 words. Send your entry and contact details by 3rd October 2011 to fiona@raynauds.org.uk or post to Head Office.

Tom

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 11

News RSA Trustees

Salford Royal Stand

Portsmouth Event

The RSA trustees pictured left to right: Mr Barry Hicks, Mr Kevin Lafferty, Mrs Beverley Myers, Mrs Joanna Kaddish and Professor Jeremy Pearson

Hannah Thomason, Fiona Trotter and Karen Littley from the RSA, (pictured left to right), manned a stand at the ‘Keeping Active & Healthy with Scleroderma’ event at Salford Royal Hospital, Scleroderma Day.

RSA member Alison Wright, (pictured left) volunteered to man a stand for the RSA at the Connective Tissue Diseases event in Portsmouth which was organised by the Queen Alexandra Hospital.

We are delighted to welcome Beverley Myers who has recently joined the board of trustees. Prior to becoming a trustee, Beverley had been a member of the RSA since being diagnosed with scleroderma 18 months ago. As a chartered marketer and former Business Link Associate Advisor, she brings with her a myriad of skills that has helped the Association to formalise a business plan, develop a marketing strategy and provide regular support for the team at Alsager. Anne would like to express her thanks to the trustees who freely give their time to support the RSA.

Case Studies Please! Case studies play a vital role in creating awareness of Raynaud’s and scleroderma and the work of the RSA. If you could help by speaking to a journalist on the phone about your Raynaud’s and/or scleroderma, please call 01270 872776 or email fiona@raynauds.org.uk

Bria the tog wh An don and for

A Good Experience I thought that I would let you know that I have been in the Royal Free for 5 days, because my finger started getting bad again. It was the best experience I’ve had after all the times I have been there. Staying in the Premier Inn close to the hospital was great. I could go out and get fresh air, walk round the shops, and more importantly I had a good nights sleep, although it was a bit lonely in the evenings. This was all covered under the NHS! Kathy Allen

Health Benefits of Blended Juice Polyphenols are found in foods as diverse as red wine, dark chocolate and green tea. Their beneficial effect on health is well known, with a diet rich in polyphenols correlating with a reduced risk of cardiovascular disease. This is because polyphenols increase the release of vasodilators (compounds that dilate blood vessels), such as nitric oxide, from endothelial cells that line the interior surface of blood vessels. 'Abnormality of this function is observed in most types of cardiovascular disease, such as hypertension, atherosclerosis and diabetes,' says Valérie Schini-Kerth, who led the team of scientists at the University of Strasbourg. Wishing to promote a healthier option than alcohol or chocolate, the team worked with the Eckes-Granini Group of Neider-Olm, a fruit drink producer in Germany, to develop and test a variety of different fruit juice blends. Different fruits contain different polyphenols, which are often

bitter tasting. For example, grapes contain a large amount of procyanidins and anthocyanins that give berries their dark red colour. The blends were tested for taste and their effect on the vasodilation of pig arteries in vitro. The team found that the most effective blend with the least bitter flavour consisted of a base of grape juice (63%), blended with apple, blueberry, strawberry, lingonberry, acerola and aronia. This blend did not have the highest overall polyphenol level, but the team saw that this particular fruit combination caused a greater increase in vasodilation than other blends. Schini-Kerth advises: 'Most of the juices you can buy in a supermarket have a very low level of biological activity. Buying fruit juices that provide something extra is an important message for consumers.' Cristina Andrés-Lacueva, an expert in polyphenol bioactivity at the University of Barcelona, Spain, points out that the polyphenol profile of each blend was not

tested so it could differ from that of the component fruits. The benefit to the cardiovascular system of a regular intake of such a fruit juice over a long period of time remains to be determined, says Schini-Kerth. Taken from the Royal Society of Chemistry (RSC) website, May 2011

Annual Draw This year’s Draw tickets are being sent out during August to members who did not opt out of receiving them. However, if you receive tickets which you are unable to sell please return them to us, with your name as that will save us postage in sending out unwanted tickets in the future. If you are willing to sell tickets but do not receive them by the end of August please let us know. Alternatively, if you would like more books there are plenty available!

a e il

use mes go hts S!

the

m of er a be

nt id er, re s, us ed to by w. re

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 12

Fundraising Double Celebration

Manchester 10k

Irish Fundraiser

Brian and Georgina Dawson celebrated their Golden Wedding Anniversary together with Eileen and George Roberts who had reached their Platinum Anniversary. Both couples requested donations to the RSA in lieu of presents and we were delighted to receive a cheque for £250.

Pictured above Susan Meadowcroft, Laura Meadowcroft and Katrine Rigby. Laura ran the BUPA Manchester 10k raising £300 for the RSA. Her mum, Susan Meadowcroft has scleroderma, which is why Laura wanted to help by fundraising for our charity.

From left to right: Rebecca Sherrard, John Minish, Patience Bradley, Amanda Ford, Matthew Minish and Alannah Minish. Alannah and Rebecca organised a charity dinner dance at Portadown Golf Club in memory of their mother, raising almost £2,000 for the RSA. We are most appreciative for their efforts on our behalf.

London Marathon

50th Birthday

Alsager Rotary

Mark Harney, took part in the London Marathon and raised £150. He managed to complete the event in 3 hours 26 minutes. Well done and thanks Mark.

Ladies Night Member Beryl Toye (pictured left) and her daughter Caroline Caccamo, organised a charity Ladies Night at Sandbach Rugby Club raising a huge £1,000 for the ‘Cool Million Appeal’. Well done and thank you!

Afternoon Tea Party Sally Avery raised £300 for the RSA by holding an afternoon tea party. Pictured left are some of her delicious scones!

Anne Sullivan raised over £300 towards the ‘Cool Million Appeal’ in leiu of gifts to celebrate her 50th birthday. Many Anne.

thanks

If you would like to receive a fundraising pack, which gives advice on how to organise a fundraising event and inspiring ideas. Please call 01270 872776 or email Hannah Thomason: hannah@raynauds.org.uk

Identity Tags We tag our pets to keep them safe, we tag our luggage in case it goes missing, so why shouldn’t people be tagged in case of emergencies? ! Identity tags carry vital information that may be needed in an emergency. They come on a neck chain, engraved with your ID and medical information and are inexpensive. If you have a medical condition you never know when these details may be required. Below is a company we have tried and tested For further information visit: www.countyengraving.co.uk

Tom Beamon, President of the Rotary Club of Alsager presented Anne Mawdsley with a cheque for £100 towards the ‘Cool Million’.

Donated Items Available We have been given a few items which may be of use to some of our members. They are free but we are requesting the cost of postage and maybe a small donation. Just give us a ring if you want further details of the items listed below: 1 pair Battery heated socks, large size 1 pair Bewell battery heated gloves, women's size 1 pair Thinsulate battery heated gloves, women's size 1 Electrially heated Cozee comfort footwarmer 1 pair Thermal activewear silk ladies long johns (size 16-18)

Publication costs for this issue of Hot News are jointly supported by Pfizer Ltd and GSK. Pfizer Ltd and GSK have no editorial input or review of the content of this newsletter and the opinions expressed are the opinions of the RSA and/or the individual authors and may not necessarily reflect the opinions of Pfizer Ltd. or GSK.

48933 RSA HOT NEWS Vol3_Vol1-09.qxd 16/08/2011 10:45 Page 1

Christmas Cards Stocking & Roof Top Twin Pack Pack of 10 cards (5 stocking and 5 roof top design) as illustrated.

Size 228mm x 86mm Price £3.50 per pack (plus 75p p&p)

Penguin Twin Pack Pack of 10 cards (5 of each penguin design) as illustrated Size 121mm x 121mm Price £3 per pack (plus 75p p&p) Pack of 10 cards as illustrated Size 228mm x 86mm Price £3.50 per pack (plus 75p p&p) The wording inside the cards is: Warmest Wishes for Christmas and the New Year

Pedal Exerciser

Green Help

This pedal exerciser is ideal to use from the comfort of your chair to improve the circulation, strength and

fitness in the legs. It is ideal for those who are convalescing to help build up strength and movement and is also suitable for those with balance issues who might not be able to stand in order to exercise. “I have scleroderma, which limits the amount of exercise I can do. I sent for a pedal exerciser with the intention of using it regularly to improve the muscle power in my legs. It has proved to be very effective and especially so as I recently developed phlebitis in my left leg. One of the recommended treatments for phlebitis is exercise so the pedal exerciser is the perfect solution!” AHM For details visit www.enjoy-able.co.uk or call 01923 282430

Turtle Doves are wrist warmers and fingerless gloves rolled into one. They’re designed to be worn on the wrist all day helping to keep your wrists and hands warm. Made from recycled jumpers, they are environmentally friendly and not only do they look and feel great but they are practical too. Every pair of Turtle Doves is unique; they come in all the colours of the rainbow. For further details or to place an order visit: www.turtle-doves.com or call 01743 344702.

Healthunlocked This free online resource is a way of bringing the RSA community together to help people who are suffering personally, or supporting someone who is. To register visit: http://raynauds.healthunlocked.com/ and on the top right hand side you will see the word "join". If you have any queries about healthunlocked call: 01270 872776 or email: fiona@raynauds.org.uk

Follow Us Keep up to date with the latest news from the RSA by following us on Facebook and Twitter. For details see our website

Warm That Sole Warm That Sole is a beautifully warming, soothing, antibacterial and antiseptic blend of essential oils. These oils were blended to treat all the symptoms accompanying poor peripheral circulation. These include chilblains, cold painful hands and feet and Raynaud's. People using Warm That Sole report rapid relief of some of these symptoms. Warm That Sole is suitable for use by most people except during pregnancy and breastfeeding, those suffering from epilepsy, and children under five. Cancer patients are required to seek permission from their oncologist before using the oils. Most oncologists readily agree to their use. For further information call 01625 869 966 or buy online at www.footessentials.co.uk

PUBLISHED BY: RAYNAUD’S & SCLERODERMA ASSOCIATION

Charity Reg. No. 326306

112 Crewe Road, Alsager, Cheshire ST7 2JA Tel: 01270 872776 Fax: 01270 883556 Email: info@raynauds.org.uk Website: www.raynauds.org.uk EDITOR: Anne H Mawdsley MBE Raynaud's & Scleroderma Association © Copyright 2011. All Rights Reserved.

Wo occ size Thi Syn sav To

Th Ho ex wis To inv ph an We if y us

The pre foll awa Un A ele pat -D Roy inte exp det yea Voo Roy inte