Professor Chris Denton FRCP, Consultant Rheumatologist,
answers your questions
Chris Denton is a Professor in the Centre for Rheumatology at the Royal Free Hospital in London and runs the Scleroderma Clinic. He also has a major research programme that spans both clinical and laboratory trials related to scleroderma. He is a medical advisor to the RSA and very grateful to the questions that he is challenged with in our newsletters (Hot News).
Do doctors know the cause of Raynaud’s?
Raynaud’s phenomenon results from excessive spasm of the blood vessels in the extremities (e.g. fingers, toes, ears etc.). This spasm is triggered by cold or emotional stress, which can be a normal response. It causes symptoms in up to 1 in 10 people, so is very common, but usually not associated with any other disease (primary Raynaud’s phenomenon). It probably is caused by complex alterations in the balance of chemicals that narrow blood vessels and those that widen or relax the muscle in the blood vessel wall. Other mechanisms may include an increased sensitivity of nerve endings in the blood vessel wall or damage to the small vessels.
Have any complimentary therapies proved to be successful for Raynaud’s?
In a condition which can be brought on by emotional stress, as well as the cold, many people have tried self-hypnosis, biofeedback techniques and acupuncture with some success. Unfortunately there have been very few clinical trials but they do seem to show that although initially the patients claim some improvement, after about a year many patients stop the treatment because they feel no benefit or it takes up too much time.
Do you inevitably develop scleroderma if you have severe Raynaud’s?
The answer is very definitely no. There have been a number of studies which have been undertaken where people have followed up the severity of Raynaud’s in terms of things like the frequency of attacks etc. What does appear to put people at risk are firstly some of the nail capillary changes and also if people have abnormal antibodies. They will have some abnormal proteins in the blood which can sometimes be present for some years and do seem to predict what is going to happen. The key thing is that Raynaud’s can be mild or it can be severe but even amongst those with severe Raynaud’s in terms of the number of attacks only a very small minority will go on to develop scleroderma.
Is there any evidence of reduced or different menopause problems for primary Raynaud’s sufferers, for example, do they suffer less from hot flushes?
The answer is probably no. If you have Raynaud’s you become very cold. The menopause can be variable. Some women can have a lot of hot flushes whilst others just have a few. I therefore don’t think that you can correlate having Raynaud’s with the number of hot flushes. It is very much an individual thing. The menopause can be very distressing. If you are having a lot of menopausal problems it is very important to actually ask someone who is used to dealing with that problem and ask them for their advice and help but it is unlikely that it is directly related to the Raynaud’s.
I have CREST and over the past few weeks I have experienced a strange sensation over my chin going towards my cheek. It feels almost creepy and numb for a short time. Is this anything to be concerned about?
This is an unusual symptom, but one possible link with lcSSc (CREST) is that the nerves sometimes become involved in scleroderma causing numbness or altered sensation in areas of the face or in the mouth or tongue. Sometimes this is painful (neuralgia) in other cases there is numbness. This symptom should be discussed with your doctor. For these problems some medications that reduce nerve irritability can be effective such as gabapentin or pregabalin amongst others.
I have Raynaud’s and my hands swell up – am I developing scleroderma?
Most people with Raynaud’s do not have scleroderma - and swelling of the hands can be normal in Raynaud’s that occurs in otherwise healthy people (primary Raynaud’s). However you should discuss this with your doctor as you may require tests to look at the blood vessels around the finger (nailfold capillaroscopy) and blood tests for autoantibodies. If these tests are normal you are very unlikely to have scleroderma.
I have the systemic form of scleroderma and am breathless but my doctor says all the tests are normal - should I worry?
Breathlessness is common in scleroderma and can reflect serious problems in the heart or lungs, or a low blood count (anaemia). However, if heart and lung tests are satisfactory it may simply result from deconditioning of the muscles. If your symptoms are stable you should have echocardiography and lung function tests performed at least once a year to make sure no serious problems have arisen.
My wife suffers from angiosarcoma on her scalp and we wondered if there was any connection with her Raynaud's as both are concerned with small blood vessels in the skin.
I am not aware of any direct connection between these two medical conditions, but interestingly there are some reports in the medical literature of angiosarcoma of the liver associating with Raynaud’s phenomenon in patients exposed to the chemical vinyl chloride. The fact that both conditions involve small blood vessels is probably just coincidence.
My daughter and I have recently been on a walking holiday during which the weather was cold and miserable. A strange thing happened on our return to base on the last day. My daughter who is 42 said her hands were numb and tingling and they had changed colour. She went to the doctor who suggested that Raynaud's could be the problem. Can Raynaud's come on suddenly like that?
Raynaud’s phenomenon occurs when the blood vessels supplying your extremities narrow in response to cold or emotional stress. It leads to colour changes with blanching (white) of the fingers and later blue discolouration and after an attack the fingers can become red. Loss of sensation or altered sensation occurs as the nerves in the hands have insufficient blood supply. These changes reverse when the attack passes. The most common age to develop these symptoms is as a teenage or young adult. However, it can occur at any age. Sometimes there have been mild symptoms for several years and only when you get especially cold or have exercised in cold conditions does the Raynaud’s become obvious. If these attacks persist or if there are any other symptoms then your daughter should see her doctor as Raynaud’s can be the first symptom of an underlying condition such as a connective tissue disease.
