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NEWSLETTER 54 APRIL  2008                                           

42, Nursery Road,

Rainham,

Gillingham,

Kent.

ME8 0BE

Dear Friends,

  Allow me to introduce myself, my name is Beverley Finn. In October I was approached by Prof. Chaudhuri and Eileen Gill, the founder and co-ordinator of Ekbom Support Group (ESG), as to whether I would consider taking on the role following the retirement of Eileen. I was happy and honoured to do so.

  As you can imagine there have been many changes made since Eileen retired and the possible delay of the April Newsletter was inevitable as Prof. Chaudhuri is now very busy being involved in many more lectures and meetings now that he has attained his Professorship. So, for this Newsletter it will be a joint effort. Prof. Chaudhuri will have his input with his medical expertise and myself, talking about how we are hoping the ESG will continue to grow and expand in the future.

  As we start a new journey together let us lift our hopes up high for a new medication that may rid us of this emotional and physically draining condition. For some of us the drugs available are adequate to relieve our symptoms of RLS. At the same time some of us have it so severe that the drugs we take only slightly dull the effects of RLS. We still need research and results in order for us all to be rid of this condition. Saying that, can we now imagine life without the drugs we do have available to us?

RLS still continues to be unrecognised by a large proportion of the medical profession. What do we have to do to make these doctors realise that we are in pain and are sleep and rest deprived. When will they realise how this affects our lives, our relationships and our work?

  My life has taken on a new purpose since becoming the coordinator for the Ekbom Support Group. No sooner had I taken on the role of running the group than I was invited to go to Brussels to join representatives of a number of European countries who are looking to form  a  European Alliance Group for Restless Legs Syndrome. We are in the process of forming the group and intend to take our case to the European Parliament to get this condition more recognised and to encourage more research. In order for me to carry on my role of representing the UK branch for RLS I now intend forming a small steering group to help me run the ESG. Eileen ran this for 20 years solely by herself, and she does deserve recognition for that, but in order for ESG to move on we must now become a registered charity so that we may have the benefits that the European countries have. These benefits would include being able to accept any monetary help from Pharmaceutical companies perhaps without the worry of possible repercussions. We have our first meeting in May in London and I will keep you posted on progress in the next newsletter. I have chosen five people beside myself who I know from our membership who have the same interest in seeing the ESG  move forwards. Eileen has given me her blessing on this and I shall keep her informed on every detail as we progress. I still work very closely with Eileen who has been my constant source of support with her wealth of knowledge gained over many years. I would also like to mention Paul, our webmaster, who works very hard for us all on keeping our website running smoothly and keeping it up to date.

  For many years I myself have suffered with this condition and have the passion and drive to help all new and existing members. In the past I have been invited by Prof. Chaudhuri to give presentations at meetings and have been invited by pharmaceutical companies to give presentations on what life is like living with RLS. I have also been involved in the making of medical training videos for this condition.

There is a new product to be licensed later this year, but I will leave Prof. Chaudhuri to write about the details of this.

  Finally I have had a telephone line installed at my home for help and advice. This line will only operate on MONDAY and THURSDAY MORNINGS between 9am and 11am. Please adhere to these times as there are insufficient available funds to cover the cost of calling people back who leave a message. Should you need to leave a message please DO NOT use a mobile telephone as we cannot cover the cost.

 And the telephone number is 01634  260483

I would also like to thank you for the kind donations and stamps we receive.

It may be necessary to draw your attention to the next Newsletter. Please send me a new self-seal A4 SAE and put your reference number in the TOP LEFT HAND corner and the number of the newsletter you want in the BOTTOM LEFT HAND corner, tucking in the flap so that it does not get stuck down in the post. All enquiries must be accompanied by a SAE and overseas members should send 3 international reply coupons instead of stamps.

I will say goodbye for now and leave Prof. Chaudhuri to cover his part of this Newsletter.

With Best Wishes

Professor Ray Chaudhuri’s Column:   Hello, for those of you who do not know me, I am a neurologist at Kings College and Lewisham Hospitals and founded the academic research and educational group called RLS:UK in 2001 with the remarkable Eileen Gill. It was very sad when she stood down from her ceaseless, tireless and unflinchingly unselfish role as the co-ordinator for the ESG but I am delighted that we have found Beverley to take up this essential and crucial task. RLS remains poorly portrayed, often trivialised and often mis-diagnosed and mis-treated in the UK and as such Beverley will play a crucial role bridging the information gap between yourselves and the medical community in particular.  

  The newsletter format, as you have noticed has changed a bit. It will have a column from Beverley as well as me to bridge information and science. As the cause of RLS remains unclear there are hundreds of information sites in the internet, there are hundreds of individual accounts of “cure”, there are many many claims to remedies. I am afraid, many of these claims and information are unfounded, non-scientific and at times could be dangerous to health. I will therefore, aim to provide a scientific account of the “news” related to RLS. Feedback from you will be very important too.  

  So what is exciting and new in the world of RLS? There have many scientific meetings in 2007-2008 which dealt with RLS and the associated disorder of PLM (periodic leg movement: a condition when the leg jerks either as you are about to doze of or when you are asleep). The most exciting discovery is that there appears to be more pointers towards a genetic basis to this condition with the independent discovery of three genes that may be related to RLS. It must be emphasised however, that as yet there are NO specific genetic tests that are available for RLS. These discoveries suggest potential genes that may be responsible for development of RLS in some and much work is needed in future.  Firstly Winkelmann and colleagues described a gene called MEIS1 (on chromosome 2) associated with RLS and this gene tends to be involved in development of limbs. Thereafter, Stefansson and colleagues described another gene called BTBD9 (on chromosome 6). Finally, Winkelmann and colleagues also described another gene involved in the action of an enzyme nNOS. Potential implications of these discoveries are huge and in future this may open up new ways of identifying and treating RLS.

 From the treatment point of view, in the last years, two drugs were licensed specifically for treatment of RLS and these are pramipexole and ropinirole (marketed specifically for RLS as Adartrel). Both are useful  but not all patients respond to these. In future we expect that Rotigotine, a skin patch that works by being applied once a day would also be licensed for RLS. Like the other two, this is also a dopamine agonist drug and also is used primarily in Parkinson’s disease. IT IS WORTH NOTING HOWEVER, THAT USING THESE DRUGS IN RLS DOES NOT MEAN THAT THERE IS ANY RISK OF DEVELOPING PARKINSON’S DISEASE. 

  It is always worth having your iron levels  checked in particular a test called “ferritin” level which is a protein that binds iron in the blood. Low ferrtin levels need to be treated with iron tablets and may help symptoms of RLS. 

  There have been some concerns related to the use of dopamine agonists particularly older ones such as cabergoline. Cabergoline is an excellent dopamine agonist and clinical data suggest that it has a huge effect in alleviating symptoms of RLS but in some cases (in Parkinson’s disease) the use of this drug has been associated with thickening of heart valves (valvular fibrosis). It must be emphasised that this is rare and not everybody on cabergoline has this and that for many cabergoline is an effective treatment that needs to be continued although the doctor should monitor the status of heart valve regularly (six monthly or yearly by using ultrasound (echocardiography). Also in a small minority of patients taking dopamine agonist a pattern of behavior resembling addiction may emerge. This may be in the form of excessive shopping, gambling, sexual activity etc. This is rarely a problem but if you or your partner feels this is worrisome then it is best to discuss it  with your doctor.   Once again this is a rare problem.

  In some cases RLS may need treatment with non dopamine drugs and commonly used ones are gabapentin and pain killers such as tramadol. Magnesium may help some people. In some additional medication for sleep may also be required. Clinical trials are under way addressing new formulations of these drugs as we speak.

And that is all I have for you this time. Summer is almost here and the nights will be shorter. I hope the symptoms of RLS are less or shorter for you too.

Ray Chaudhuri