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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CHECK UP 1. - Raynaud's Disease
RADIO 4
THURSDAY 24/02/05 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
ROB MOOTS
PRODUCER:
HELEN SELBY
NOT CHECKED AS BROADCAST
MYERS
Hello and it's very good to be back and just in time to tell you that February is Raynaud's Awareness Month. Well if you have Raynaud's you'll almost certainly be aware of the way that it makes your fingers feel - cold, numb, white, maybe turning blue or even purple and then bright red - it can be very painful. You might have an attack like that everyday, especially in weather like this, or maybe you only ever get the symptoms occasionally when you're upset or stressed. Some workmen get the symptoms when they use power tools like mechanical diggers, and then it's called vibration white finger.
Well whatever triggers it for you Raynaud's is a condition in which the blood supply to the fingers shuts down and though it's not dangerous it can be disabling, at least temporarily, if, for example, your hands are so numb that you drop things. So how do you prevent an attack, what medical treatments are available and should you be worried that it might be a sign of underlying disease? There is in fact an association with scleroderma - just one example.
Well call us now with your questions - 08700 100 444. You can e-mail checkup@bbc.co.uk and put your questions today to Professor Rob Moots. Rob is consultant rheumatologist at University Hospital, Aintree in Liverpool, he's flown down today, and he's the medical advisor to the Raynaud's and Scleroderma Association.
We've had many calls, we'll go straightaway to the first one - Rachael Wilson has phoned, she's in Brixton and has - well - symptoms of Raynaud's? Tell me about it.
WILSON
Right, well I'm 48 and I've suffered from Raynaud's for several years but I find that it's increasing over the years, increasing - getting worse - and especially so this year. It manifests itself and my fingers are typically really, really swollen, sometimes to double the size, and my toes also. They're sort of perpetually, throughout the winter, dark blue unless I'm really warm and then they go red. And also I've got very painful chilblain like sores on the fingers and toes and I find that it's obviously restricting my walking because I find shoes uncomfortable and also manipulating my fingers - I'm finding this increasingly difficult.
MYERS
So it's fairly obvious you'd like whatever advice you can get today from the Professor.
WILSON
Yes please.
MYERS
Okay well right over now to Professor Moots. So what would you say, what's - I mean is it a classic Raynaud's - is that what we're talking about here?
MOOTS
Well hello Rachael, I'm sorry to hear about the problems that you're getting with your hands and your feet. What you describe certainly would fit with Raynaud's. This is a disease that's caused by the blood supply to the hands and feet becoming interrupted and it usually gets triggered by a change in temperature - usually when people get cold but sometimes if they get a shock or if they're very worried about something. Could I ask you how old were you when it started?
WILSON
Probably about early 40s. I've always had pretty bad circulation but probably early 40s, I'd say.
MOOTS
And you feel that things have been getting worse?
WILSON
Oh definitely so, yes, and it happens now that it's not just when I go out in the cold, it's throughout the winter they remain like this, I can almost sort of guarantee it'll start in November time. And it also happens in the summer if I get cold as well.
MOOTS
Well that really does sound very much like Raynaud's, particularly because it tends to be triggered by changes of temperature. Have you spoken to your GP about it at all?
WILSON
Well most GPs tend to be a little bit dismissive, they've just said you know wear warm clothes, gloves, socks - which I do. And also they had suggested that at one time there might have been a heart tablet that actually people take for the heart that increases the blood flow but I was rather reluctant to go down that avenue.
MYERS
So Rob presumably that's not bad advice to wear warm clothes if you are susceptible to this but what about taking something more - I mean you're talking about heart tablets here - is there a role for medication in this condition?
MOOTS
Yes there certainly is Rachael a role for medication. Most people with Raynaud's don't need to take any drug treatments at all and doing exactly the things that you've done have been entirely right, sometimes people need heated gloves, rather than ordinary gloves, but that doesn't really suit everybody. And if that doesn't work and you've tried all the sensible things of keeping warm then in those situations taking drugs can help. And I think your GP has correctly suggested that some types of drugs used to reduce blood pressure - they work by opening up the arteries and opening up the arteries that get shut down is very helpful in Raynaud's. So it might be worth trying one of those to see whether it suits you.
WILSON
Right, because I've tried the natural remedies, because I prefer that sort of - go down that avenue - gingko and ginger - but you know just nothing seems to help, whether I wear gloves or not, it just doesn't seem to help at all.
MOOTS
But I think you've been very sensible because I fully agree that if we can avoid taking tablets that's obviously the best thing but having tried everything else it maybe that now's the time to try those for you.
MYERS
Okay we may move to another caller because they are stacking up, I have to tell you, and there'll be more information as we go through. And I think Linda Ward is waiting patiently in Northampton with a young daughter with symptoms of Raynaud's and wondering whether first to go to the GP. Linda, how young is your daughter?
WARD
My daughter is 13 and she's come to me a couple of times now saying oh look at my fingers and one of them has gone white. And I didn't really pay much attention, I thought it was chilblains, although I don't really know what that is, so do I need to take her to the doctor?
MOOTS
Well thank you for calling Linda. I've got I think good news for you that this type of problem, and it does sound very much like Raynaud's, is very, very common and there's about up to 10 million in the country that suffer from it, and it's very common particularly in teenage girls.
WARD
Oh right.
MOOTS
And if it starts off in a girl in her teens then the odds are - we can't guarantee it - that as she gets older, particularly in her 20s, it will actually settle down and go away. So I think that there's actually a very good outlook for her. But nevertheless I think it would be worth taking her to a GP, who can give her a quick check up and just make sure there isn't anything else going on.
MYERS
I mean we've said already that it happens because the blood flow to the fingertips and actually to the toes as well in some cases or even the ears closes down, but I mean are you able to say, Professor Moots, why that should be in certain people and why in fact particularly in women, because I think it's overwhelmingly women who seem to get Raynaud's condition?
MOOTS
Well that's the really important question and we're all actively trying to do the research to be able to answer it and the truth is we don't know the full answer. We know it's much more common in women than men and we know it tends to come in more often in teenagers. So because of all of that we think it could be linked to hormones and particularly around all the hormone changes that go on around puberty but exactly why it causes this disease in some people or this problem in some people rather than others we don't yet fully know.
MYERS
Is there research going on?
MOOTS
There's a lot of research. There are a few centres in the UK with a particular expertise and interest in this disease and there's a lot of active research both at trying to understand how the disease is caused but also how best to treat the disease.
MYERS
I mean you said to Linda, who's still listening, it's probably worth going to the GP to get it checked out but what actually realistically is the GP going to say and to do if, as you've already said, it's probably not necessary to go on medication, certainly not in the first instance and certainly not perhaps at 13 if you can possibly avoid it? So what's the point of going to the doctor?
MOOTS
What the doctor can do is give a general check up just to make sure there isn't anything linked, very occasionally - and it would be very, very unusual in your daughter's case Linda - it can be the first sign of another disease. The odds of that are about 1 in 500 against it, so it really is very, very tiny. The GP can actually give general advice about the disease and also put you in contact with other people that can help and give more advice and help if that's really useful. And there is a charity that deals with this called the Raynaud's and Scleroderma Association and they're very, very helpful in providing advice and tips about living with the disease and also advising about the different types of treatments if they're ever required.
MYERS
Okay, we've in fact had a lot of tips sent in by our listeners. Kathy Evans says gloves, socks, heated insoles and wheat bags - she's quite keen on wheat bags heated up in the microwave, pop those in the bed, pop them in your pocket, they serve as hand warmers. Sarah Cain says she would recommend the use of battery heated insoles, she also says that whisky is very warming but it's not good to drink it all day. I think Michael Morris joins us with some more tips. Michael, hello, what do you recommend?
MORRIS
Hello.
MYERS
Hello.
MORRIS
I'm really speaking partly from my own experience and partly because I used to be a general practitioner but retired some 13 years ago, so any medical ideas I have are probably out of date. I think one of the most important things that hasn't been mentioned so far is smoking. I suffered from Raynaud's myself, probably from my late teens, but I can't remember exactly when it happened, it was certainly not disabling at any time. But I did find that it improved considerably when sometime in my 40s I stopped smoking.
MYERS
So as a doctor you were - took your own good advice and stopped smoking. First, can we talk about that, is that well understood that smoking would make this condition worse or even trigger it in some people, let me ask this of the professor in front of me?
MOOTS
Well thank you Michael for making that point, I think you're absolutely right. Raynaud's is caused by the arteries shutting down and smoking, we know, damages arteries, so the combination of smoking and Raynaud's is a particularly nasty one. First of all it can trigger attacks, secondly, it can aggravate attacks and thirdly, it can lead to complications with a very, very poor supply of blood. So it's a very important point to make and I would strongly advise anybody that does have Raynaud's first of all to not to start smoking and if they do smoke to stop.
MYERS
Okay, any other things that are helping you in particular Michael?
MORRIS
No the other things have been mentioned by the other callers, which they're talking about keeping their hands warm and feet. I do have to say that the two or three people who've spoken before have had it far worse than I've - than I think I've ever seen it, certainly in myself. But certainly keeping your wrists warm I think is very important - mittens certainly helps, or has helped me because the circulation to the fingers and the hand is quite close to the skin round the wrist and so it's a possible loss of heat round the wrist, so you keep your wrist warm and then you're going to lose less heat and the blood getting to your fingers. I don't know what the Professor thinks about that.
MOOTS
I think that's very sensible advice, absolutely.
MYERS
Okay thank you very much indeed for that call Michael. Let's go to an e-mail from Terry, who says that as a sufferer he's put up with cold fingers and toes for years and as he writes this it's snowing heavily and that means for him two pairs of gloves and three pairs of socks. "Even so my digits are freezing. I've tried a couple of different pills, that was a few years back but they had nasty side effects." And so Terry's question is: "I wonder if there is improved medication now and perhaps alternative therapy that can help?" He says he's male, 50 and thanks.
MOOTS
Well I think that's an important point that you've brought up Terry. There have been a lot of advances in our understanding about how to treat this disease with drugs for the people that do need the drugs. And there's a whole range of different types of medication that can be helpful, some of them are anti-blood pressure tablets and others, strangely enough, were initially made as a type of antidepressant but what was found is that these drugs had a very powerful effect in relieving Raynaud's attacks. So there's a lot of variety of drugs available. And in some people who get the really worse type of Raynaud's there can be an opportunity to have a very brief spell having an infusion of a new drug in hospital and this drug needs to be infused over a period of three or four days but it has a lasting effect for a few months, but that tends to be just reserved for the worse possible types.
MYERS
And we've had the question raised, as we often do in talking about drug prescriptions, am I going to be on the drug for life, how will I know that my Raynaud's is still rampaging if I'm on drugs to sort of mask the symptoms and people don't like the side effects of drugs. I guess in particular they can get headaches and feel rather dizzy from some of these drugs which allow the blood to flow more freely but of course that can have that rather nasty effect.
MOOTS
Absolutely and I think what I always advise people is we should try a treatment and see if it works for an individual. If it does then they can carry on and usually the treatments are needed more for the really cold months in the winter and maybe not needed at all in the summer. And if that particular treatment doesn't work or causes a side effect there are alternatives and we can play around with things until we find something that suits somebody and doesn't give them the side effects.
MYERS
Okay thank you. Mike now in Worcester with fingers that go white and waxy - that doesn't sound very nice. Got a problem Mike then?
MIKE
Oh good afternoon to you. I'm 57 and I was diagnosed as having something wrong with my fingers when I was about 11 by the local GP, who just said live with it, it's not going to kill you, so I hope things have progressed since then. And what I was really looking at was is there any sort of different change of diet or exercise that can keep the blood flow going to the fingers?
MYERS
Yeah, diet and exercise, exercise is certainly good for getting the blood circulating - is that a sort of recommendation would you say Professor?
MOOTS
I think on the whole exercise is really good for everything really and being fit in that respect makes one feel much more healthy in general. Although really exercise doesn't play a major role in affecting the number of attacks of Raynaud's. What I think is particularly interesting Mike from your question, if I may just ask a little bit further, you mentioned that your hands and fingers are going waxy, is that something that's just new?
MIKE
Oh no, no it is - promise you won't laugh at this - there was a standard joke at school that say on the cross country run you do your run and you come back with white fingers like a wax model and you could stick pins in them and no blood would come out at all. But it never went to toes or anything like that. And now if I'm doing anything I start feeling cold it's a case of wrap up even more and previous speaker's comments about keeping your wrists and wearing mittens and things like that, just generally keeping your hands warm and get in the warm as soon as you can to stop it getting worse.
MOOTS
And that's sensible advice but what I think is important and in you this has been going on for a very long time, Raynaud's in a tiny proportion of patients can lead on to a much more serious disease called scleroderma, where - and that really means hard tight skin ...
MIKE
No I haven't got that.
MOOTS
Right, well that's good.
MIKE
No, it's absolutely no problems at all. I saw the GP a couple of days ago about something else and I'm okay, perfectly okay.
MYERS
Well that's good, I mean is that a general rule of thumb - if I can use that phrase in this context - that if you're used to it, it's been there for a long time, and isn't getting worse then okay you do what you can to keep it under control because it's not pleasant to have an attack but it's if you see something different or something that's new for you or perhaps has come on in middle age then perhaps you would like to see that person would you as a doctor?
MOOTS
Absolutely, I think that we can consider Raynaud's broadly into two types. There's the so-called primary type that usually comes on as a teenager and tends to be more of a nuisance than a problem and then the other so-called secondary type where it's really usually the first sign of a much more serious disease. And if we have somebody that develops Raynaud's as an adult, in their 20s or 30s or older, then I think it's always important to go and see your doctor for a check up because they can make sure whether or not you might have any risk factors for the more serious type of disease and if they think that's the case then they will refer you across to a rheumatologist who can check over in more detail and if necessary treat you.
MYERS
And that's interesting, just to bring in another e-mail, from Paul because he tells us that 23 years ago his wife was diagnosed with Raynaud's but sadly died through complications of scleroderma six months later. Now he's saying both his son and his daughter suffer from Raynaud's or probably suffer from Raynaud's - what advice would he give them. So really the question is, is there any inheritance - hereditary factor going on and can one condition - Raynaud's - lead on to scleroderma, which in this case sadly had a tragic outcome?
MOOTS
Yes I'm sorry to hear about the death of Paul's wife. Scleroderma, it tends not to run in families but Raynaud's can. So it's not a big surprise if there are other people in the family with the condition. It's very unlikely that they would progress and develop into the disease that your wife had. But if you are worried it would be very easy for your GP to do a simple blood test that can measure an antibody in your blood and if the antibody is not present in the blood - like it isn't in most people - then the odds of actually progressing on to scleroderma would be even less.
MYERS
So that would be really a very good reason to see a rheumatologist - a specialist - who can hopefully rule out that anything else is going on underneath the symptoms that you've got.
MOOTS
I think in most cases this could be done by a GP but I think if somebody in the family has had scleroderma, I think if it was me I'd like to double check with a second opinion.
MYERS
Okay and while we're on the subject of scleroderma, although it is relatively rare, Jean Baldock is on the line with a question about that - Jean?
BALDOCK
Oh hello yes.
MYERS
Hello.
BALDOCK
I wanted to ask whether you can tell me what treatment is offered to those suffering from scleroderma to slow down the process of this disease? Sorry?
MYERS
Does this involve you?
BALDOCK
No, not me but daughter.
MYERS
Okay, so what medications can help slow this down? Do you want to say just a little bit more about it because it's - you said it's hard skin, is that all it is?
MOOTS
Yes, it's a rare disease and as I say scleroderma is Greek for hard skin. And it tends to start off often affecting the skin, usually people have Raynaud's before they develop it, but the problem is not just the skin, although that can be a particularly nasty complication, people can also get disease in their lungs, the heart, the kidneys and the bowel, in fact it can affect almost any organ in the body and it can be particularly nasty.
MYERS
Okay, so medications then. Importance of picking it up and getting on with treating it?
MOOTS
Well I think the first thing is Jean that your daughter if she hasn't seen a rheumatologist ...
BALDOCK
Yes she has.
MOOTS
Good, well that's very important because this is a disease that must be looked after by a hospital specialist. A specialist will do it in combination and in partnership with the general practitioner but to make the diagnosis and to lead the treatment it's really a specialist. And at the moment unfortunately we don't have really any treatments that will be curing the disease, although very, very occasionally if we can catch it very, very early we can sometimes stop it. The way we treat people now is to really minimise the symptoms and cut down the impact of the disease on the important organs such as kidneys and heart and lungs.
MYERS
So does that help Jean?
BALDOCK
Yes. I was just wondering about research, I've heard that in the USA something to do with MSM, whatever that is, is it effective and in our country, the UK, nitric oxide to maintain flexibility in the connective tissues.
MYERS
Sounds as though you've done a lot of research on your own.
BALDOCK
Well no, not really, not really. My daughter tells me very little, that's why I'm hoping to speak now you see. She doesn't want to worry me but I'm worried anyway.
MOOTS
Well there is a very active research programme in the UK looking into first of all the cause and secondly the treatment for scleroderma. And I'm pleased to tell you that pretty well all of the treatments that are available around the world and those that are being studied in clinical trials around the world are actually available within trials at the specialist scleroderma centres in the UK. Now I'm not aware of the one that you mentioned from America ...
BALDOCK
MSM - that's a sulphur, vegetarian - you know - health shops.
MOOTS
Right, well that sounds very interesting. There are a lot of other studies involving new drugs, which are being developed either to treat scleroderma or initially invented to treat other diseases that's being studied for their effectiveness in scleroderma. And there's a lot of promise that these will produce new treatments that work even better. It's still a little bit early days to know whether they're working or not but very soon we should know about that and I think it's a very encouraging time at the moment.
MYERS
Okay, I hope that that's helpful and useful to you Jean. Thanks for that. Rob, just because we moved from Raynaud's to scleroderma, just point out for people again who may be wondering if one is leading to the other, what exactly is the association between these two conditions?
MOOTS
Well one doesn't cause the other. First of all Raynaud's - it's a common disease, more often than not it's milder rather than severe but there is a spectrum of it and there's up to 5-10 million people in the country that suffer from it. Scleroderma is a disease where most people with scleroderma will have Raynaud's but we're talking about only 10,000 people in the country. So in other words if you have Raynaud's the odds of getting scleroderma are really, really tiny and one does not cause the other.
MYERS
But if you've got scleroderma you will also have Raynaud's. Thank you very much. We'll go to Raymond Harris in Croydon with a question. Have got Raynaud's and wondering what else to try - what have you tried - lots of things?
HARRIS
Yeah well I mean I've tried gloves and Ginkgo Biloba I tried as well for a while to see if that helped but it didn't seem to have much of an effect. It was interesting listening to that chap earlier where he said his fingers were white and waxy because I've always described them when they go like tallow - they've got that sort of waxy look about them. And then as the warmth comes back they do tend to be sort of blue and puce and those sort of colours. I mean the only thing I do to warm them up is to put them in some warm water - but that's the wrong thing to do but it doesn't seem to affect me apart from bring them back to life as it were.
MYERS
Okay, well we're sort of ending where we began with just a few more tips, if you may offer us those please Rob. Simple everyday things you might be able to do to help yourself.
MOOTS
Wearing gloves and socks, keeping warm, stopping draughts - for most people that helps. For others there's a whole range of medicines that can be safe and helpful and it's worth speaking to your GP about that.
MYERS
Thank you very much, good advice. That's all I'm afraid though that we have time for today. Thanks for all your calls and your e-mails. Special thanks to my guest Professor Rob Moots. And if you did miss any of his expert advice you can of course listen to this programme again, go to Check Up by visiting our website bbc.co.uk follow the links. And if you prefer to speak to a real person about this then you can call our free and confidential helpline. The number there is 0800 044 044. And join me again if you will next week when we'll be welcoming your questions on a subject that's hard to ignore - chronic pain.
ENDS
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