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Rainham,
Gillingham,
Kent.
ME8 0BE
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.
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
