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hot news Issue No. 115

Raynaud’s Awareness Month 1st-28th February 2011

Volume 1 2011

In this issue...

February is Raynaud’s Awareness Month in which we aim to concentrate on highlighting Raynaud’s and the work of the RSA. We know that there are approximately 10 million people in the UK who have the condition, be it mildly or more severely, when it becomes a big problem, is extremely painful and interferes with one’s daily life. Then of course there are the people who have scleroderma, which falls into the category of secondary Raynaud’s, of which there are approximately 8,000 people in the UK.

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Press releases have been sent out and awareness packs distributed to libraries, hospitals and medical centres.

If you could put up a poster, organise a fundraising event or help in any way to highlight this campaign please contact the RSA on 01270 872776.

Prof Denton - Doc Spot Pages 4 & 5

Cool Million We’re getting there!

The appeal has now reached over £200,000 thanks to your generosity. This is an exciting project which we hope all our members will become involved in. There is still a long way to go to reach our million, but with your support we are confident that we will achieve our aim.

Here I Come!!

Rotary Club Support Page 11

It is so vitally important to find answers to the many unanswered questions, for example quite simply “What causes Raynaud’s?”, “Why is there no cure for bowel problems in scleroderma?”, “What can be done about calcinosis?”...etc.

Remember that we would welcome your ideas as to how you would like to see the Cool Million spent.

Thank you for your support

Scottish Half Marathon Page 11

New Research Grants At the last meeting of the Trustees the following research grants were awarded totalling £217,494: Royal Free Hospital - Professor Chris Denton – Interstitial Lung Disease and Pulmonary Hypertension in Scleroderma.

Salford Royal (Hope Hospital) - Dr Ariane Herrick – Nailfold Capillaroscopy – Validation of its use as a Clinical and Research Tool.

Our present commitment to existing research projects is £1,061,143

Percy Takes A Walk!

Page 11

Raynaud’s Awareness Month - February 2011

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Welcome Dear Readers, If the weather over the past few months didn’t test folks with Raynaud’s, I don’t know what will! I wonder if people who suffered from the cold temperatures could imagine what it was like for those of us who have Raynaud’s. I trust that you all managed to keep reasonably warm and are starting to think about Spring. It can’t come soon enough. I very much hope that everyone will find something of interest in this edition of Hot News. Remember that we are Anne H Mawdsley MBE

always pleased to receive any contributions and comments on our newsletters.

Cool Million My sincere thanks to everyone who sent Christmas cards or made a donation towards the Cool Million Appeal over the Christmas period.

Cool Million Competition This is a new feature in Hot News. On page 6 of this issue, you will find details of an opportunity to send us your feedback on two different topics and win a HotRox. These are very effective, electrically powered handwarmers which we have found to be excellent. However, comments from members on this and any other items which you have purchased from us would be really helpful to ensure that all products are useful.

Raising Funds If you work for a company or know of any local voluntary organisations in your vicinity who you think may be able to support our Cool Million Appeal, we can supply a letter or leaflets for you to use. We can also offer support if you can organise an event yourself or with a group of friends.

Selling publicity items At members’ request, in addition to the RSA pin badges, we now have a new stock of Percy badges which we can send out on sale or return (20 maximum per request).

We also have printed pens and many other items. Just give Karen a call or check our online shop www.raynauds.org.uk/shop.

Percy’s Travels

to be featured in Hot News. Everyone who membership database system, which will sends in a photo will receive a free gift. be of immense value to us, saving a great deal of staff time. It will be much more What a badge can do! efficient and user friendly.

I was travelling back by train from a meeting in London in December, wearing Membership renewal my RSA badge when a lady came into the My sincere thanks to everyone who has carriage, looked at the badge and said paid their renewal fees for 2011. This has “Hello. I’m one of your members”. She was been a great help to our administration. We Maureen Matthews from Stockport. It was realise that over the Christmas period it great to meet a member I hadn’t met before would not have been high on your list of and we chatted for the whole journey. A priorities. However, there are still some chance encounter through wearing the members who haven’t as yet renewed and RSA badge! we would be most grateful if you could do so as soon as possible. If in any doubt just give Leaflets and posters us a call and we can check your Please help us to advertise the work of the membership status. A form is on the reverse RSA through posters and leaflets at of the carrier sheet. hospitals, health centres, libraries etc.

Always check when you go for your Postage hospital appointment to see if any of our With postal costs due to rise once again, posters are on display. We have three could I please request that when you write different posters, Raynaud’s, Scleroderma to us requiring an answer, that you enclose and Cool Million ones. We can send them an SAE. The cheapest and most effective to you or to the hospital department. way to communicate if you have internet access is by email. We can get an answer Supporting our work to you very much quicker than by post.

There are many ways in which you can help to support the RSA. It isn’t just monetary Case Studies donations but maybe you have expertise in One powerful way of spreading the word is an area where you could offer professional by case studies. We realise that not advice. We were delighted to be offered the everyone wants to ‘tell their story’ but if you expertise of one of our members, Bev could it really would be appreciated. My Myers from Bradford, who is assisting the thanks to members who have submitted trustees in formulating our business plan. their story for this issue of Hot News.

Bev runs her own company and her experience has been invaluable.

Exciting times ahead!

Make sure that you have your Percy beanie with you when you go on holiday or Thanks to funding received, we are in the anywhere exciting and send us your photos process of having a brand new

CHIEF EXECUTIVE & FOUNDER Anne H Mawdsley MBE PRESIDENT Prof. Dame Carol Black DBE TRUSTEES Barry Hicks, Joanna Kaddish Kevin Lafferty, Jeremy Pearson

PATRONS Sharron Davies MBE Roger Jefcoate CBE Veronica, Lady Piercy Nick Ross David Wilkie MBE

All the very best for 2011

Anne MEDICAL ADVISORS Prof. J Belch; Sister S Brown Prof. C Denton; Dr. A L Herrick Dr. C Lovell; Dr. R MacDonald Prof. P Maddison; Prof. R Moots 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.

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News & Views A Chance Encounter We then started discussing bowel problems - something which we both experience on a regular basis - not a great topic on holiday but good to be able to talk to someone who really understands.

One of the benefits of being part of an organisation such as the RSA is having the opportunity to talk to someone who has similar problems.

However, the overriding factor in having scleroderma is that we are all different, we cope in different ways, we have different symptoms and so making comparisons is not easy.

Life will never be the same as before so we learn to cope with a large burden of problems that change from time to time. To the outside world we say 'I’m fine' but let's be realistic, we're not always fine and therefore it is important that we have a close friend or a relative who we can be honest with and who can understand our feelings. Positive thinking is great but not always easy, especially when you are feeling low.

No matter what you do or where you go Raynaud's and scleroderma goes with you. It is easier at home where everything is familiar but on holiday when one's routine is changed, the challenges begin. This year, my husband and I decided for the first time to go away for Christmas and the New Year, which brings me to the point of this article written on that holiday.

It was purely by chance, when talking to people at our annual conference last September, that I discovered a new member, Iris, who had booked to go on the same holiday over Christmas! We knew very little about each other, except that we both had limited cutaneous systemic sclerosis (CREST). And so it was, that over Christmas my husband and I met up with Iris and her husband Ron, and we began comparing notes, starting with our hands.

Iris has all her fingers intact but they are very puffy and, as she said, 'look like sausages'!

Her nails don't grow and are very dry but I was envious that at least she had decent nails. My fingers are mostly thin and bent, certainly on my right hand where they are curled into the palm, making gripping anything almost impossible. My nails are distorted, curled over and I have several nails growing on top of each other.

Strangely, although we both have the same condition, Iris doesn't have the problem of calcinosis which causes very painful ulcers on my fingers which seem to last forever and she doesn’t get swelling in her wrists for which I wear a splint at night. We talked about the various medications we have tried and those currently being taken. As we chatted, I began to feel grateful that at least I had a diagnosis (Raynaud's in 1975

I speak to many people on the telephone at the office on this subject and it really is a problem and one that I hope will feature in our 'Cool Million' research programme.

Anne and Iris with their Percy mascots!

and scleroderma in 1984), whereas Iris had spent over 35 years seeing many doctors who all dismissed her symptoms as not being important. One doctor eventually told her that she had Raynaud's. However, over the years she has had lung problems, breathlessness on walking uphill or any incline and a persistent cough.

Swallowing and bowel problems developed but still none of the doctors she saw had looked at the broader picture and come up with a diagnosis of scleroderma.

When first diagnosed with Raynaud’s, Iris had our leaflets, read them and put them away but as her symptoms developed she got out the leaflets again and contacted the RSA and ordered my book ‘Scleroderma The Inside Story’, which she read from cover to cover. She couldn't believe that so many of her symptoms were described in such detail.

Iris then joined the RSA and went back to her GP to request a referral to a rheumatologist. She and her husband then came to our annual conference and as a result she got a referral to the Royal Free where limited scleroderma was diagnosed.

We discovered that we both get problems with eating and swallowing. Quite simply, we both know when we have to stop eating, even if it means just leaving a spoonful. Iris doesn't have exactly the same problem as me, she can feel the blockage but it eventually clears, whereas in my case, I get a pain in my chest and I know that whatever is causing the blockage has to come back up in order to resolve the situation. This is can be very embarrassing.

Iris gets very breathless and even laughing can make her cough. However, she manages to walk, avoiding uphill and inclines and doesn't need to use a wheelchair. Never in a million years did I think that I would allow myself to be pushed around in a wheelchair but needs must. At home I manage except for days out, whereas on holiday I have to succumb or we would be very confined to what we could do or where we can go. Fortunately my husband is fit and healthy and doesn't mind pushing! There are two main reasons why I needed to use a wheelchair on this holiday: for two years I have had a very painful, ulcerated toe that needs dressing every day. I can't put weight properly on this foot and wearing shoes is uncomfortable. Secondly, walking and bowel problems don't go together! I had major bowel surgery in June of last year and am awaiting another procedure. One bonus of using a wheelchair is that I don't get breathless but a disadvantage is not being in control, especially at pedestrian crossings! My husband does his best but can't seem to understand that a red light doesn't mean wheelchairs have priority and therefore I have spent many a time holding my breath while being propelled into oncoming traffic!

Iris and I both took Percy with us, hence the photo, and Iris even managed to find another two people on holiday who had Raynaud's - fortunately I had all the RSA details with me!

Well, that's life! There are not many people who go through life without any illness but it is how you cope with it that is important.

I think the reason I wrote this article is that instead of working full time at the office all week I had a break and time to think and reflect. Meeting Iris and Ron was great - I guess these things are meant to be and if it hadn't been for a chance encounter at the conference, we may never have got talking. They are a lovely couple, we all got on well and Iris and I appreciated being able to share our experiences.

Anne Mawdsley

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Doc Spot Your Questions Answered Professor Chris Denton

FRCP

swings can occur due to medication or other medical conditions and so if the situation becomes more severe you should discuss with your doctor.

Consultant Rheumatologist, Royal Free Hospital

For the second year running my wife has had digital ulcers and last year she had several. She has had Floxapen (Flucloxacillin) antibiotic and has nearly finished them but we are a bit worried about infection as they still look bad. At the start we applied hydrocolloid gel and it was fine but we found out that they are better if uncovered. The rheumatologist thinks that the underlying cause is scleroderma and he has ordered blood tests, a CT scan of the thorax, imaging of the intestine and stomach and he had a concern about a respiratory noise he heard. She had a chest X ray and blood tests. She is to have a lung function test and he wants to monitor her more frequently. She suffers no loss of breath and is otherwise fine.

It is very important to confirm a diagnosis of scleroderma and this can usually be done by a specialist assessment and tests including autoantibody examination and capillaroscopy. There is a growing awareness of the importance of prompt diagnosis because all patients with scleroderma should have regular tests of heart, lung and kidney function so that any complications are detected and treated at the first opportunity. Usually heart and lung tests are repeated on an annual basis.

Although absence of breathlessness is good, it does not exclude complications and tests such as echocardiogram, lung function or CT scanning, which are much more sensitive.

My wife has been given amlodipine and this has worked miracles, as her Raynaud's attacks have now become very rare.

Unfortunately, she did not start amlodipine before the onset of the cold weather and I think the digital ulcers she has are a result of starting the medication a bit late.

There are many drugs that help Raynaud’s phenomenon and can help to treat or prevent digital ulcers in scleroderma.

Calcium channel blockers such as amlodipine are often used and other drugs such as angiotensin receptor blockers (e.g. losartan) or serotonin blockers (e.g. fluoxetine) may be prescribed. Sometimes combinations of different drugs are used.

In the most severe cases other treatments

04

such as bosentan, sildenafil (Viagra) or prostacyclin may be considered. It is very encouraging that you have found a drug that helps as it can take a while to settle on the best treatment.

Are there any antibiotics which could be applied to the ulcers as cream, to avoid taking them as medication?

In general I recommend trying to avoid topical (local) application of antibiotics (ointments and creams) to ulcers in scleroderma because the infection is usually deeper in the tissues and so antibiotics given by mouth or injection are usually more effective. In fact it is important to take a higher dose and longer courses than for simple infections if you have Raynaud’s, as the poor blood supply that causes ulcers to form and become infected also reduce the level of antibiotic that reaches the ulcer. In addition, preservatives and other components of antibiotic ointments and creams can sometimes slow ulcer healing.

I have recently been diagnosed with Raynaud's. I know that stress can contribute but I am normally a calm, level headed person but I am finding that when I get cold my temper becomes really short and I get aggressive. Could this be a side effect or just anger due to the fact that I resent my condition? If you could let me know if there is a link between mood swings and Raynaud's I would be most grateful.

It is well recognised that emotional stress can aggravate or trigger attacks of Raynaud’s phenomenon. This is because Raynaud’s occurs when the body sends the message that blood needs to be diverted away from the extremities and towards other organs. Specifically, it is directed to muscles as part of the “flight or fight” basic response that has developed over many years of evolution. The suggestion that cold may trigger mood change is an interesting one but there is no direct evidence for this. I suspect that it is an indirect link due to the very real challenge of coping with Raynaud’s. Mood

I was diagnosed with Raynaud’s 63 years ago when I was 8 years old. I have experienced all the Raynaud’s symptoms over the years, but in my mid fifties I began to get an achy pain in my left shoulder area, which travels down my arm. On a bad day the pain can last for 6-8 hours.

Two GPs have assured me that it’s not a heart problem or any kind of rheumatism and I had a nuclear perfusion test for angina last year, which was negative. As this pain occurs the moment I get stressed, I’m wondering whether there is some connection with Raynaud’s, regarding blood vessel constriction.

Any chest pain is potentially serious and it is sensible to consult your doctor and have the appropriate tests performed. A nuclear perfusion scan is an excellent way of assessing any serious problems with blood supply to the heart that could signal coronary artery disease. I am glad that the test was normal. There are other ways that Raynaud’s can be associated with chest pain if the Raynaud’s is occurring due to a related disease such as scleroderma.

There can be inflammation in the muscles or joints of the chest wall or inflammation of the gullet (oesophagitis). These conditions can be diagnosed by appropriate tests.

The point that you make about a direct association between Raynaud’s and chest pain is intriguing. There are reports of Raynaud’s causing poor blood supply to internal organs and some researchers have suggested that it could cause transient symptoms such as chest pain.

This is an area that deserves further study but there is no evidence that such a mechanism contributes to serious heart disease.

I frequently have blood vessels rupturing in both of my hands (mainly fingers) which sometimes cause bad swelling and pain.

Blood vessels can become fragile in connective tissue diseases that are associated with Raynaud’s. In addition, some treatments for connective tissue disease such as steroids (e.g. prednisolone) can make blood vessels prone to spontaneous damage and bruising in the skin. However, this is also something that can happen in healthy people as they age and is not usually of major significance.

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Doc Spot Doc Spot Continued....

I am not diabetic but have numbness and loss of sensation in both feet and have now noticed what appear like small, round, bony extrusions on my feet and forehead.

If Raynaud’s is due to underlying scleroderma then hard chalk like material can be extruded through the skin, usually at sites of pressure or minor trauma such as the fingers or elbows. This complication is termed calcinosis and can be diagnosed with a simple X-Ray. The calcinosis appears dense due to the calcium it contains. Treatment is difficult but local surgical removal and treatment with some antibiotics has been reported to be helpful.

I would be most grateful if you could throw any light on any of these problems, as my GP has been unable to give me any answers. I have had a bowel problem since my junior school days, which has slowly become worse in the last few years.

Scleroderma is very commonly associated with bowel abnormalities. The commonest problems are constipation or episodes of diarrhoea. Typically there may be alternation between these two problems and that can make treatment especially difficult. Sometimes in later disease there can be problems with maintaining a good seal at the bottom and this is a particularly distressing symptom. Any underlying bowel problem, such as constipation or irritable bowel syndrome, could become more severe if scleroderma develops.

I have been diagnosed as having CREST but I don’t have any signs of calcinosis. Is this likely to develop in the future and if so is there any way of preventing it from happening?

The term CREST refers most appropriately to a subset of patients that have limited systemic sclerosis in which chalky lumps of calcified material, termed calcinosis, develop. This usually occurs on the fingers or sites of minor trauma and can be very troublesome causing pain, infection and skin ulceration. Only around half of patients with limited systemic sclerosis have calcinosis and so it may not occur but typically becomes more frequent after some years of the condition. Unfortunately, there is no proven treatment or prevention and more research into calcinosis is very much needed.

I have been told that Vitamin K could help my Raynaud’s. Is this true or are there any other vitamins or health foods that may improve my circulation?

A number of vitamins and supplements have been reported to help Raynaud's including antioxidant vitamins such as Vitamin C and Vitamin E. Other supplements such as fish oils, ginkgo biloba and others have also shown some beneficial effects. Responses are quite individual and so it is worth trying several different supplements or vitamins in succession to identify what may suit you best. There are some reports of Vitamin K supplements helping Raynaud's but no clear evidence of benefit and we do not recommend this to our patients.

My three-year-old son has Raynaud’s but his six-year-old brother is fine. I have been told that it is quite rare in young children. Is he likely to grow out of it as he gets older?

Raynaud's is uncommon in children and should be investigated to see if there is any associated condition. If this is primary Raynaud's then it may improve as your son gets older and he will certainly be better able to deal with the symptoms.

Medication for Raynaud's is generally avoided in young children but if required as he gets older this will also potentially improve the problem.

I try to keep my hands warm at all times but it doesn’t seem to stop ulcers from forming at the end of my fingers. Why is this?

When ulcers occur on the finger tips in Raynaud's, this usually means that there is an associated condition such as scleroderma. In this case there may be fixed narrowing of blood vessels as part of the disease. These blood vessels cannot open up even when the hands are warm. In addition, it is important to keep your whole body warm as Raynaud's is often triggered when the body feels cold and is trying to conserve heat by closing blood vessels in the extremities, so wearing lots of layers is very important.

I saw my GP because my fingers were changing colour and getting very painful in the cold weather we had in December. It hasn’t been as bad as this in previous winters. He said I had Raynaud’s, did some blood tests and prescribed nifedipine. He said he was going to refer me to a rheumatologist at my local hospital for further tests. What would these tests be and why do I need to have them?

Colour changes and finger pain precipitated by the cold may be due to Raynaud's. Although this is a very common condition and is not usually associated with any other disease, it can be a sign of the development of disorders such as

scleroderma or lupus and so it is sensible to be reviewed by a rheumatologist, who can organise blood tests (especially antinuclear antibody tests) and sometimes blood vessel tests, such as capillaroscopy (looking at blood vessels around the base of the finger nail). If these tests are normal then primary Raynaud's is the most likely diagnosis and nifedipine may be very helpful. If not there are other treatments available and you can discuss these with your doctor.

I have scleroderma. Why does my food sometimes get stuck when I eat?

Swallowing difficulties are reported by almost all patients with the systemic forms of scleroderma. Many patients with scleroderma develop problems with swallowing food due to the altered contraction of the oesophagus (gullet) that occurs in most cases of the disease. This leads to poor contraction and acid reflux with heartburn. Drugs that suppress acid production in the stomach, such as omeprazole or related agents, can be very helpful. Spasm of the muscle in the gullet may also occur and that can make food stick. Occasionally more severe permanent scarring can develop, called a stricture, and this may require a stretching (dilatation) procedure to be performed.

I have been told that one shouldn’t take alcohol if you have scleroderma (chocolate and coffee have also been mentioned!).

However, I do find that a little whisky in hot water can bring my fingers back to life when frozen. Is this acceptable?

Although too much whisky might certainly aggravate some aspects of scleroderma, such as oesophagitis (see above), and have other adverse effects, a little taken in moderation, as you describe, should not be a problem and alcohol makes blood vessels in the skin open up (hence you get flushed cheeks after drinking) and so it may well help some symptoms of Raynaud's.

My teeth are constantly breaking off and I wonder whether there is anything I could do to prevent this happening or strengthen the teeth I have left.

The teeth often cause problems in scleroderma due to the tendency for a dry mouth and for the gums to recede. Good oral hygiene and routine dental care is very important to reduce problems.

Unfortunately, problems such as reduced mouth opening can make this a challenge for your dentist.

If you have a question you would like Professor Chris Denton to answer, please send to Head Office 05

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News LOCAL CONTACTS Eastleigh, Kathy Allen

02380 610678 Cumbria, Ruth Randall

01229 835727

Cool Million Competition Your chance to win a HotRox Feedback on products and swallowing problems

Manchester, Gill Holden

01942 877259 North East, Jessie Pickering

01388 527840 Fife, Rose Bevan

01382 552272 Worcestershire, Shirley Lynch

01386 553392 Burton on Trent, Helen Nutland

01283 566333 Ext. 5032 Bristol, Margaret Goff

01454 310225 N. Ireland, Patience Bradley

02890 592370 Mobile: 07966 416553 North Wales, Kate Owen

01492 515834 Shipley, W Yorks, Bev Myers

07903 448038 Knaresborough, Tony Overend

01423 862551 Suffolk & North Essex, Jacky March

01473 717206 Rickmansworth, Marilyn York

01923 286780

Contacts Wanted Mrs Dawson from Kent has Raynaud's and would like to hear from others with the condition in her area.

Please write to or email Mrs Dawson via Head Office and we will forward on your correspondence.

The HotRox was advertised in the last issue of Hot News and is proving to be an excellent heating aid. The HotRox (£29.99 + p & p) allows you to have heat within 15 secs. It can be turned on and off and lasts up to 6 hours on a single charge, or for longer if you use it on half heat. The product can be recharged from either the mains or a computer USB and is rechargeable up to 500 times. A car charger is now available so that the HotRox can be charged in a car (£6.99 plus £2.50 p & p).

Product Feedback Since the RSA now offers a wide range of products through our online shop in addition to our Mail Order leaflet, we would really like to have feedback on any of the products we sell or recommend.

The Royal Free, London, is holding the annual Scleroderma Family Day on Saturday 14th May 2011. For more details about the event contact Pamela Yeomans on 01273 672686 or email: pamela.yeomans@scleroderma-royalfree.org.uk

If so we would like to hear from you, as we are trying to build up a picture of how this problem affects people. Hopefully this will make it easier to treat.

Below is one example but you may have different symptoms: It can happen at any time when eating. A pain develops in the chest, around the breastbone. which is the signal to stop eating. Hiccups sometimes follow and then the sudden urge to retch. You don't feel sick but know that you need to get to the toilet quickly as clear liquid builds up in the mouth. On reaching the toilet it pumps out - mostly saliva in big bubbles but sometimes also followed by food or drink.

The strange thing is that we are advised to drink water but that just seems to sit on the 'blockage' and is the first to come back. Some days are fine and although only eating small meals, there is no way of knowing whether this temporary 'blockage' is going to happen. It is embarrassing in company and really frustrating when you are enjoying a meal and have to leave the table. The whole process can bring tears to your eyes and you only know it is better when the pain goes away and you are back to normal.

If you have any comments or suggestions on either of the above, email info@raynauds.org.uk or write to us. Only by sharing our experiences can we endeavour to help the researchers in finding better treatments.

Please put HotRox Competition in the subject box if replying by email. All respondents will be entered into a draw - closing date 8/4/2011 (for current paid up members). There is a form on the reverse of the carrier sheet if you haven’t yet renewed. There will be two HotRox prizes, one for each topic.

Write your name, address and membership number on a piece of paper, together with the name of the product and your comments or use the form on the back of the carrier sheet and send to: Alternatively email the information together with your comments to info@raynauds.org.uk

Percy Pics - Free Gift!

Don’t forget to send us your Percy Pics to receive a free gift.

Percy pin badges now available £1.00

Promoting Percy is also helping to promote the Cool Million Appeal

Publication costs for this issue of Hot News supported by Pfizer Ltd Pfizer Ltd 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.

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Scleroderma Day Royal Free Hospital

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46542 RSA HotNews_Vol1-09.qxd 24/01/2011 08:26 Page 8

Research Research Reports from the Royal Free on RSA funded grants Role of connective tissue growth factor in Scleroderma Objective of the project: We have shown through previous RSA funding that a key growth factor protein called connective tissue growth factor (CTGF) is over expressed in scleroderma.

The aim of this study is to investigate: • What controls CTGF expression in fibroblasts?

• How does CTGF cause scarring and fibrosis?

• Does CTGF cause other cells to become fibroblasts and contribute to scarring?

• Can we use small molecule pharmacological inhibitors to block CTGF action?

Our long term aim is to identify new targets for the design of a new generation of drugs that are effective at preventing further scarring and fibrosis in patients with scleroderma.

Second Year Report: Scleroderma is a complex disorder of uncertain cause, characterised by progressive vascular and interstitial fibrosis. Our previous work has shown that the soluble growth factor connective tissue growth factor (CTGF/CCN2) is an important component of the fibrotic process being over-produced especially in the skin and lung. We have recently shown that we can inhibit CTGF expression by fibroblasts by blocking the angiotensin pathway (ANGII; angiotensin receptor II), or by activating specific signalling pathways using receptor antagonists and agonists. We have also carried out experiments using small molecule pharmacological inhibitors specific for CTGF. These inhibitors not only suppressed CTGF production, but they also modulated the expression of other scarring proteins including fibronectin, alpha smooth muscle actin and a group of several novel proteins.

These proteins are thought to play an important role in the transition of epithelial cells into fibroblasts.

These studies suggest that CTGF, in addition to having a role on fibroblasts, may also control the function of epithelial cells, although the mechanism of regulation is unclear. Fibroblast-epithelial cell interactions are believed to be important, not only during normal tissue repair but also during fibrosis. We have found that the epidermis of scleroderma skin exhibits abnormalities, taking on an

activated phenotype similar to that observed during the normal wound healing response. Common features of the activated scleroderma phenotype include elevation in the level of tissue reactive oxygen species. These chemicals are known to activate cell signalling pathways such as the ERK map kinase pathway.

Interestingly, this pathway is also activated

by CTGF. Recently, we have also demonstrated the potential mechanism by which we can bring about a reduction in CTGF and ERK signalling as well as other fibrotic markers, in scleroderma skin fibroblasts, by specific inhibitor drugs which reduce reactive oxygen species.

Our data show that CTGF may be an important regulator of novel proteins which mediate the transition of an epithelial to fibroblast cell type. Increasing the number of pro-fibrotic, collagen producing cells may be an important aspect of the scarring and fibrotic process, while targeting parts of this mechanism with pharmacological inhibitors may be a potential therapeutic treatment.

David Abraham Pathogenesis and Clinical Manifestations

Progress so far There has been been progress over the last 12 months in the following areas: 1. Genome Wide Association study (GWAS) in SSc 2. Candidate gene analysis in SSc 3. Gene expression profiling in SSc and IPF - Common or unique genetic variations The Future Although this work is still at a relatively early stage, it is already producing exciting results and the last 12 months has been a very productive time. By defining the key genes and proteins that are altered in scleroderma lung disease we will be able to better understand the factors that determine whether lung fibrosis progresses or remains stable. We will also better understand the likely pathways to blocking fibrosis and the links with other aspects of the disease. Our novel GWAS approach, using a small, highly clinically and biochemically defined group of

These findings open up a whole new era in our study of the genetics of scleroderma and the identification of disease-related genes.

of Pulmonary Fibrosis in Scleroderma Objective of programme The objective of this research is to identify and characterise the role of patient genetics in scleroderma (SSc), and to determine how different genetic factors impact upon the susceptibility of someone developing SSc, the rate of progression and organ involvement. In the long-term we aim to utilise our understanding of genetics to improve patient management and outcome. Our main aims are to: • Identify the genetic polymorphisms associated with risk of developing pulmonary fibrosis in SSc patients • Determine how these genetic variations influence disease susceptibility, progression and outcome • Assess whether differences are biomarkers for SSc

these useful

genetic clinical

• Investigate genetic targets as candidates for novel approaches to therapy This work will provide critical insights into the mechanisms of lung fibrosis, and hopefully permit early identification of cases most likely to progress before major lung fibrosis has developed. This will provide real potential for improving the quality of health care and effective treatments for SSc.

patients, has been shown to be a valid and powerful strategy, as it has confirmed previous GWAS studies with larger cohorts. More importantly, we had identified 20 new and novel genetic areas of association, most of which have not been previously implicated in SSc. Moreover, our “candidate gene approach”, based on our increasing understanding of the clinical condition and disease pathogenesis is equally valuable and complementary, providing an additional and more extensive assessment of the genetic areas/genes which were highlighted on the gene expression studies, with a potential explanation for the observed expression differences.

Interestingly several of the genes highlighted in the profiling studies do not appear on the GWAS maybe due to incomplete coverage of the genome provided by the current GWAS platforms, or more complex genetic associations not identified by GWAS technology.

Therefore we believe that our three themed approach to study the genetics of SSc is valid, robust and will eventually provide not only strong biologic markers for diagnosis and prognosis of the disease, but also useful and effective therapeutic candidates.

Christopher Denton, Athol Wells, David Abraham, Elizabeth Renzoni, Carmen Fonseca, Panagiotis Pantelidis November 2010

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Case Studies Writing Competition Winner one of irritations. I am short of breath, I can only eat very small amounts at a time and have to avoid bread and potatoes (they stick in the gullet), I am forever putting drops in my eyes and sucking saliva stimulating tablets and I have painful areas of my hands and feet where calcium breaks through the skin. I have to go to the hospital for my dentistry as private dentists cannot get into my mouth as it will no longer open wide enough.

My first intimation that I had a problem was back in 1979 when, as I was hurrying along Baker Street (I then worked in Harrow) on a cold London foggy day, my feet in my smart business shoes felt quite numb. Reaching the warm meeting room, I was surprised to find that with my shoes off under the desk nothing improved.

I sought no help with this although it happened whenever I was walking on cold pavements and at that time it did not affect my hands.

As I have been taking steroids for years my muscles are weak and walking is difficult.

However, I am determined not to let it get to me. At 86 years old, I still run the retirement fellowship (50 people), take an art club every Friday (in my own studio), attend another art class on a Monday, put on the local Feast Week art show every year and am president of Probus and social secretary for the church. In addition, I still garden (with some help now) and besides painting, I embroider, knit, do parchment craft and live alone unaided except for a cleaner who comes for 2 hours a week.

June Law

After retiring in 1984, I joined a bowling club.

I was a very fit 60 year old and ready to take on the world. That autumn season when the first mists came down, my hands turned almost black and were excruciatingly painful. This condition persisted whenever I was outdoors and it was cold.

My doctor informed me that I had Raynaud’s and prescribed the usual actions to take. I lived with this for many years and in fact bowled until I was 81 years old.

In 1995 (age 71) I had an operation for bowel cancer which was successful. The next year I approached my doctor as I had little red spots appearing on my face and in particular on the lips and he said that six months prior he would have said that it pointed to bowel cancer but there had been strides in discovering other avenues and he thought I had CREST. He then explained what it was and arranged for me to see a Consultant Rheumatologist, when his diagnosis was confirmed.

I have problems with my oesophagus, lungs and calcinosis and have tests for these every year. In addition, I also developed Sjögren’s Syndrome (no tears and no saliva). So, my condition is

My philosophy is that while I can walk, talk and stay upright, I shall not let Raynaud’s and scleroderma defeat me. When I read Hot News, I feel for those who are only just coming to terms with this aggravating disease. It may be a difficult time but smile and soldier on - there is little else to do!

If there is anyone in the Leicestershire area who has Raynaud’s and scleroderma or any variation of it and would like to talk, I would be pleased to meet you. Please contact me via the RSA. June Law, Leics

Runner-up Until five years ago I had never heard of scleroderma and even Raynaud's was a phenomenon that I had read about but just thought my cold hands and feet were a normal reaction to the cold!

Then, suffering from what I thought might be arthritis in my thumbs (my Gran had had rheumatoid arthritis), I went to the doctor.

“Well”, the consultant said “don't worry you have the less serious form of scleroderma called CREST”, and that was it!

No treatment or tests, just an annual check up. But also that year - I was diagnosed with breast cancer which, needless to say, wiped everything else from my mind.

The latter was a godsend as I was able to take early retirement and concentrate on my future. Some positive steps were taken to change my consultant, join a cancer support group and be open with my friends as to possible limitations to what I could and couldn't do.

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I am lucky in that my condition is mild and so far seems not to have progressed and I can live a normal life. I took my GP’s advice and live life to the edge of my limitations and my personal goal is then try to push out the boundaries when I can.

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Anona Morgan, Herts

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Anona Morgan

These events made me re-evaluate everything. I took time off work to deal with the cancer treatment and I did loads of research - really looking to see why all this had happened to me. Oh yes, and a few months later, redundancy came along.

There are days when my hands won't work; when the cold really gets to them and my digestion isn't what it should be but most of the time life is good and 'normal'. There are days when any little ailment or symptom obsesses me - is this the scleroderma or the cancer or just the normal ups and downs of life? But the brick wall that appeared five years ago when I couldn't think beyond the disease from day to day is now a low parapet that occasionally has an extra row of bricks that I have to climb over. And the great thing is that I can climb over it!

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People say that your priorities change when your health is compromised in any serious way. I don't think that mine have changed significantly - perhaps the difference is that I’m making the choices. I still rush around doing too much and always playing catch up but I love travelling, studying for a Master's degree, spending time with friends, theatre, even joining a gym and hopefully I'll soon be going skiing again - the first time in five years.

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46542 RSA HotNews_Vol1-09.qxd 24/01/2011 08:26 Page 10

Case Studies Emma When I started having problems with my hands I had a good idea of what was wrong with me because I had heard about Raynaud's and read articles in magazines. I saw my doctor who confirmed Raynaud's but the medication I was given resulted in bad side effects and I had to stop taking it. My condition was getting worse and was affecting my hands, feet and tongue. On really cold mornings the tip of my tongue would go numb and it would spread further back. It was an awful sensation and I remember thinking one morning “can I actually talk?”. I was struggling to undo the laces on my trainers and I had no idea how hot water was when I was running it if my hands were dead.

I attended the RSA Conference in 2009 - it was really helpful and everyone I spoke to advised me to get a proper diagnosis. I had to fight to get my blood tests and initially I was asked if I wanted to take the same drug as I'd already had but at a lower dose to try and avoid the side effects. I declined and as I did not want to mask my symptoms. I wanted to know what was wrong with me.

Following the blood tests I was diagnosed with limited scleroderma - CREST syndrome. I remember saying to my mum “trust me to get something weird!”

“Luckily for me I have a great consultant and I cannot fault the treatment and care I have received.”

I am taking medication to help my circulation and protect my kidneys and I have had lung function tests and heart scans. My consultant calls me Miss Fit because I am a fitness fanatic! He always says being fit is a good thing and can only help and I believe my fitness made the onset of my condition quite gradual.

Although I do feel I can do the things I want to do, I would not describe life as normal. Apart from the very hottest days of the summer I never have a “normal” day with my hands or a day when I don't think about them. I used to get white and red hands. They now tend to go white, blue and then red. I feel like a rainbow! My medication has made my attacks less severe so that I can still function with my hands but the temperature is starting to drop now and that causes the attacks to be more frequent and more severe.

Initially I found that it had to be quite cold for me to start having problems but I have noticed I have problems now even if the temperature is higher. I also find damp weather sets off attacks. I have described myself as a human barometer on more than one occasion - I can usually tell what the weather is like outside whilst I am in the house by what my hands are doing! I wonder if I should apply for a weather girl slot - it could be my calling!!

“Generally my attitude is to get on with the things I normally do but be sensible when I need to be.”

We had a really cold winter in 2009/2010 and sometimes I chose to stay in because I knew no matter how wrapped up I got I would still pay for it. I think I’m lucky in that most of the things I do are indoors - I have an office job and I spend a lot of time in the gym and training in martial arts. I think if I had been more of an outdoors person my life would have been affected much more.

It's really hard to describe the pain of a bad attack to someone who doesn't have the condition and the fact that the pins and needles that you often get when your hands are coming back to life can be a welcome feeling!

Thankfully organisations like the RSA provide a good support network for their members and support research to further understand and better treat both Raynaud's and scleroderma.

Fay Fay Collings cannot leave the house without taking warm clothes - even in summer. This is because she has Raynaud’s. The mother of four moved from Australia to England in 1968 and was diagnosed with the condition in 2001.

She said: “Having Raynaud's means that I have to take a pair of gloves and a cardigan everywhere with me. Even if it is July and 35 degrees! My fingers Fay Collings can go blue, then white and finally red. By the time they are frozen the pain kicks in. However, it hurts the most when they start to thaw out,” she added.

Mrs Collings from Surrey said: “Generally people just dismiss it as having ‘cold hands’. Everybody gets cold hands so they don’t think it could be a serious condition. However, it affects every day of my life. For instance, I could go to the supermarket and by the time I get to the counter my hands would be frozen and I would be dropping my items everywhere. Of course it can get you down but you just have to get on with life and have a positive attitude.”

Taken from the Surrey Mirror

Deirdre Aged 35, Deirdre Yager first became aware something was wrong in 1995 when she started having breathing problems. She had developed scarring in her lungs - caused by the production of collagen, which was reducing their capacity. However, doctors failed to pick up on these signs at the time and she was only properly diagnosed as having scleroderma three years later, at the Royal Free Hospital.

Deirdre Yager Describing the initial effects of her condition, she said: “At first I couldn’t walk up the road. I had to have oxygen in the house because I couldn’t breathe. I told friends it was like living on Everest. I also had a terrible time with cuts and sores on my hands to the point that I couldn’t do up my buttons.”

Now 50, Deirdre’s symptoms have stabilised since she was put on a rolling course of steroids. But with two children, aged 15 and seven, Ms Yager said, while she doesn’t over-do it because of her breathing, she is determined to continue living as normal a life as possible.

“I personally try not to let it stop me doing anything,” she said.

Taken from the Ham & High Newspaper

Case Studies Wanted Case studies play a vital role in helping to gain publicity. If you would be happy to speak to a journalist on the phone about your Raynaud’s and/or scleroderma, please call Fiona Trotter on 01270 872776 or email fiona@raynauds.org.uk. Often a paper is only interested if they are able to interview a local person.

Emma Major, Yorkshire

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News Goat Serum - a potential treatment?

Systemic sclerosis (scleroderma; SSc) is an autoimmune rheumatic disease that causes inflammation, vascular damage and fibrosis. Diffuse cutaneous systemic sclerosis typically is most active in the first 3 years from onset. The skin disease usually plateaus or improves over 1 to 2 years; however, drivers of the disease after the initial 3 years are less clear. Currently, potent immunosuppression is the mainstay of treatment for early disease but it is neither feasible nor beneficial in most cases to continue treatment for longer periods due to potential side effects. For this reason, other treatments are being studied on an ongoing basis. Recently it has been suggested that established late stage scleroderma might benefit from milder or more subtle forms of immunosuppression.

One potentially exciting new approach is to use a goat serum derived treatment called AIMSPRO. Goats are injected with a killed virus and they produce proteins in their blood to fight the virus. These proteins, purified from the goat serum, help boost the immune system, somewhat similar to immunoglobulin. They also contain anti-inflammatory properties. The trial is to assess the safety and benefit of this exciting treatment in patients with established diffuse scleroderma. It is used as an additional therapy to standard medical care in these patients. This medication has already been used in some chronic neurological disorders.

Further details of the scleroderma study, which is based at the Royal Free Hospital and has now completed recruitment, can be found on: http://www.clinicaltrials.gov/ct2/show/NCT 00769028?term=AIMSPRO&rank=2 Dr. Niamh Quillinan, Clinical Research Fellow, Royal Free Hospital

Raynaud’s & Botox You may have seen an article in the Sunday Mail relating to Botox for Raynaud's. The heading was 'Botox, the cure for cold hands'. Please don't build your hopes up as this is in the very early stages. The RSA's Doc Spot expert Professor Chris Denton, sent us this information in response to the article:

not responded to or cannot take other standard vasodilators (nifedipine etc.) or intravenous iloprost. It would be helpful to have a formal clinical trial but this is something for the future. The best trial would have to be placebo controlled and so there are significant practical issues to consider".

"The press have picked on something which is in such early stages that it isn't really helpful. There are other treatments which are much more effective.

Thelin

Most cases of Raynaud's are not so severe and can be treated with conventional strategies (vasodilators, lifestyle, stop smoking etc.). Other approaches - (iloprost, bosentan, viagra) are used in a minority of cases with severe complications. Botox is much more experimental and more research would be needed before true benefit is confirmed.

In any case with regards to botox treatment, this is something that has been around for a while, mainly in the USA. It is one of a long list of medical uses for botox including treating muscle spasm and other neurological diseases.

For Raynaud's the theory is that it may provide the benefit of a digital sympathectomy operation (that you may be more familiar with) but without surgery.

Botox is injected around the blood vessels of the base of the finger. It can be quite a painful procedure but patients have reported benefit and there are several small studies from USA. It is not a cure and part of the benefit may be from blocking pain nerves as well as reducing blood vessel spasm.

Plastic surgeons at the Royal Free have treated a number of Raynaud’s and scleroderma patients and some have reported benefit. At present this is only considered in selected cases that have

An Important Message It has been announced by Pfizer, that the drug Thelin, also called sitaxentan, is to be withdrawn from the market on the grounds of safety. Patients who presently take this drug should not be unduly concerned and must not stop their drug abruptly. They will be contacted by their specialist Pulmonary Hypertension team and transitioned to another therapy.

European Scleroderma Questionnaire

Jac and the in o £10 boo Ver bou priz req

We have been asked to highlight an anonymous scleroderma survey which is available to complete by visiting: http://www.surveymonkey.com/ s/sclerodermaUK This is a European study that aims to determine issues that are important to individuals living with scleroderma. It includes questions about symptoms that people with scleroderma might experience, as well as psychological, social, employment, and financial issues. It also asks about your ability to obtain appropriate healthcare. This is your opportunity to help focus research into areas that you identify as being important to you.

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Fundraising Annual Prize Draw Raises Over £10,000

Rotary Club of Yate and District

Charity Swim at Manor Sailing Club

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At the RSA regional meeting in Bath, John Goff presented Anne Mawdsley with a cheque for £1,000. This was donated on behalf of the Rotary Club of Yate and District following completion of John’s year as President of the Club. This was in addition to his other fundraising activities, which raised over £500 that year.

Jack Taverner, Choir Master of the Sandbach and Alsager “Can’t Sing” Choirs, popped into the office to pick out the winning raffle tickets in our Annual Draw, which has raised over £10,000. This money will be a tremendous boost towards the ‘Cool Million’ Appeal.

Very many thanks to all our members who bought and sold raffle tickets. For a list of prize winners please send an SAE with your request to the RSA.

Masonic Need Fund

Danny Reddings (pictured above) had planned to complete the Great North Swim in September but the event was cancelled due to blue-green algae. However, not to be put off, he managed to complete the 1 mile swim in open water at the Manor Sailing Club in Staffordshire with the aid of the Meynell Hunters Triathalon Club. Danny said: “It was a brilliant experience and I managed to complete the mile in 41 minutes”. Danny’s fundraising efforts raised nearly £1,500 for the RSA.

Scottish Half Marathon

Percy Takes a Walk!

Pictured left to right, Robert Cushen presenting Jacky Collins with a cheque for £100 from the Masonic Need Fund, Loyal Cambrian Lodge No 110 in Merthyr Tydfil.

Percy Boxes Raise over £28,600 Bridget Ferguson, one of our very first members and a staunch supporter of the RSA, took Percy on the Alderley Edge Bypass Walk, for which they were both sponsored to the tune of £300. Many thanks to you both!

Raising money online Easyfundraising.org.uk is a free online shopping directory which enables charities to raise funds simply by shopping online. Every time a purchase is made, the retailer will make a donation to the cause, which the buyer has nominated. It does not cost you to shop and raise funds this way so please visit www.easyfundraising.org.uk and nominate the RSA as your chosen charity.

To date over £28,600 has been raised for RSA research by members collecting their loose change in their Percy Boxes. Sincere thanks to everyone who has contributed in this way.

It all goes to show that pennies make pounds!

If you require a new box just let us know.

From left to right: Michelle Cook, Ronnie Cook, Janet Dickie and Kenny Macewan who raised £336 by taking part in the Great Scottish Half Marathon.

Party Time!

Skydive Ashleigh Owen, one of our younger members who has scleroderma, took part in a sponsored skydive raising £162. Thank you Ashleigh. You are very brave!

Fiona, Yun Wah, Alka and Sandra, enjoying themselves. Many thanks to Yun Wah Wan, for organising a party which raised £100 for the RSA.

Ebay Success - unwanted gifts?

Member Betty Birch from Cockermouth very kindly donated two Sasha Dolls to the RSA. We had our first attempt at selling on Ebay and were delighted to have received bids which totalled £900. If members have any unwanted items which we could sell on Ebay please let us know. Alternatively we are always appreciative of any raffle prizes for our annual draw or regional meetings!

The RSA has registered with Mission Fish - a way to support the RSA by buying and selling items on eBay. Visit www.ebay.co.uk and go to ‘Choose a Charity’ and select ‘Raynaud’s & Scleroderma Association’. It is a simple and effective way to fundraise.

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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, including 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

Diary Dates

NURSE ADVICE LINES Sally Reddecliffe & Adele Gallimore Royal Free 020 7472 6354 (For Pulmonary Hypertension Enquiries)

Specialist Nurses Royal Free 020

7830 2326

Sue Brown Bath

01225 428 823

Liz Wragg Manchester

0161 206 0192

Specialist Nurse Leeds 0113 Jan Lamb Liverpool

3923 035

0151 529 3034

Karen Walker Newcastle upon Tyne

0191 223 1503

Audrey Hamilton Belfast 02890

561 310

Paula White & Julie Ingall Portsmouth 02392 286 Jayne McDermott Sheffield 0114 Lucy Pigram Brompton

935

2711 627

0207 352 8121

(For Lung Enquiries)

Beep 7112

Steve McSwiggan Dundee 01382

633 957

(Only available Mon, Tues & Wed mornings)

Annual Conference - Chester 24th September 2011 Scleroderma Family Weekend 14th – 16th October 2011 Any families who are interested in joining us in Chester for this weekend, should let us know as soon as possible, as we need to confirm the booking with the hotel. This weekend, where we will be joined by Dr Gavin Cleary, Paediatric Consultant and his team from Alder Hey Children’s Hospital, Liverpool, is for families who have a child with scleroderma, aged 18 or under.

Regional Meetings We are in the process of organising several regional meetings. Further information will be in the next issue of Hot News and on our website www.raynauds.org.uk See list on left.

The nurse 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.

It should be emphasised that the nurses who run the advice lines also have very busy schedules and therefore on occasions you will get an answerphone to leave your details for the nurse to get back to you when available.

The advice lines are not intended for use in an emergency.

PUBLISHED BY: RAYNAUDʼS & SCLERODERMA ASSOCIATION

Charity Reg. No. 326306

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 EDITOR: Anne H Mawdsley MBE Raynaud's & Scleroderma Association © Copyright 2011. All Rights Reserved.

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