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MEETING TO FORMALISE THE RLS/EKBOM ASSOCIATION
A meeting was held on 30 August in London. Minutes of this meeting will
appear here as soon as they are available. This
page has details of the relevant documentation for the meeting.
Cabergoline and other drugs that were reported as giving symptoms of valve problems with the heart
Margaret's heart rending account
Sue's detailed account of her car accidents and restless legs.
Eileen Gill the co-ordinator of the Ekbom Support Group, the woman who single handedly created this support group, is to pass on the reigns to...........In Newsletter 53 Eileen Gill tells us how she formed the Ekbom Support group (ESG) and of her sadness at passing it on but tells of the immediate arrangements to keep ESG functioning and her hopes for the future.
How to contact us - new arrangements for email, telephone etc,
The whole newsletter for October - N/L 53
Restless legs syndrome patients may need drug rotation.
Synexus are holding new trials to test a medication that may ease the symptoms associated with restless legs syndrome. (Updated 16/8/07)
The RLS clinic at Blackheath will be resumed by Professor Chaudhuri from January 11th 2007.
Ekbom Support Group in the news
From the 20th. Anniversary Meeting of the APSS. (Associated Professional Sleep
Societies) June17-22, 2006. Salt Lake City, Utah.
At the meeting, all aspects of sleep disorders were discussed, including RLS.
The basic science and clinical characteristics of RLS were the subjects of many poster
presentations and lectures. An international group presented the results of the first
population-based pediatric RLS survey, having collected data from over 10,000 families.
The criteria for RLS was used and met in 1.9% of 8-11 year- olds and in 2% of 12-17 year-olds.
Two different APSS poster representations explored the value of using a single screening question to identify possible RLS patients. Those with affirmative responses then answered more detailed questions to determine whether they met the International RLS Study Group diagnostic criteria. A single screening question can eliminate people without RLS rapidly.
A high level of sensitivity was found with the question, " When you try to relax in the evening or sleep at night, do you ever have unpleasant restless feelings that can be relieved by walking or movement?"
This extract was presented by Professor H. Shapiro and colleagues.
Postage rates causing us problems.
We
have been receiving mail labeled "This item has been
underpaid". Possibly some of these items were posted before the new rules came in, but please, before you put any more items in the post for The Ekbom Support Group, make sure the stamp is correct. Check
out the Royal Mail postage here,
or use this page which describes the new size
formats introduced by the Royal Mail.
We have no memberships fees and cannot afford to pay surcharges on our post and
so we may have to return under-paid mail. As we would not like to ignore any requests for information to RLS sufferers, please check
the size of your envelopes before posting. Thank you.
List of Consultants to Ekbom Support group
Appointments for a Restless Legs Clinic (in UK)
Tony had to cut short holidays - He now takes ....
Sharon finds co-codamol gives her complete relief.
Book Page: "Restless Legs Syndrome"
Cabergoline and other drugs that were reported as giving valve problems with the heart.
In determining what advice to make to enquirers about heart valve issues that arose about a
year ago (more information is
detailed here) we asked Professor Chaudhuri for his advice and he wrote:
"Cabergoline is a long established Ergot related dopamine agonist and has been widely used for
Parkinson's disease and RLS worldwide and still continues to be used in some countries. There has been some evidence in recent years that use of
cabergoline like other ergot related agonist
(such as pergolide) may cause stiffening and thickening of heart valves causing flow
murmurs and
very occasionally heart failure. For this reason cabergoline is no longer the first line drug for use in
PD although it remains a very effective drug and many patients with PD continue to use this. if a
patient needs to continue using cabergoline then they would need 6 monthly echocardiography (an
ultrasound test of the heart) and certainly, Cabergoline is not a killer drug. A study from Prof Chaudhuri's group published in the journal of neural transmission reported very few patients
developing heart problems on cabergoline".
(the ESG webmaster notes that he understands that PD as used above means Parkinson's Disease).
To discover Professor Chaudhuri's association with Parkinson's disease go
here.
A partial quote from that page: "The International Parkinson's disease Non Motor group's lead clinician, Dr Ray Chaudhuri, from the
Movement Disorders Unit at King's College Hospital, London, said: ...... "
Restless legs syndrome patients may need drug rotation.
Periodic medication changes may be necessary to keep RLS symptoms in
check. Physicians in New York have documented the details of two patients who, in less than a year, required escalating doses of medication in order to control the condition. At some point, the drugs also started to make things worse, indicating the medication class should be switched.
"One cannot simply prescribe a single medication for RLS and expect long-term success. Patients
with this condition often require careful clinical monitoring and frequent medication adjustments." wrote the authors.
Story: amednews.com
Synexus are holding new trials to test a medication that may ease the symptoms associated with restless legs syndrome.
Restless Legs Syndrome (sometimes known as Ekbom's syndrome) is a distressing condition that affects approximately 1 in 10 people. Sufferers may feel down and anxious and also suffer from periods of disturbed sleep. You may suffer from this syndrome if you experience any of the following symptoms:
An urge to move your legs, usually accompanied by uncomfortable and unpleasant sensations such as burning and pain.
The urge to move your legs becomes worse during periods of rest, and may be particularly bad in the evenings or night-time.
Your symptoms are improved by movements such as walking or stretching.
Synexus Limited is running a clinical trial to test a medication that may ease the symptoms associated with restless legs syndrome.
If you are aged between 18 and 80 and would like to find out more please contact Synexus.
Further details of Synexus are here. Locations of the test centers ( Manchester, Reading and Chorley) involved with this study are here. A FAQ about clinical trials is here.
And you can get more information using this web based email form.
Synexus is a commercial company operating with doctors and nurses outside (of) the NHS. All reasonable out of pocket expenses will be reimbursed once you are accepted onto the study.
Additional information recently supplied:
You may remember speaking to me last year with regards to our RLS studies. I see on your
website that you still have details of Synexus and RLS studies that we have running so thank you
for that. I just wondered if you would be able to add a few areas to the article, as we now have
several more areas in the UK that are taking part and so we would be able to reach a larger
patient population.
The areas are Midlands, Merseyside and Scotland. The contact details for these centers
are as
follows:
Midlands- 0121 414 0303
Merseyside- 0151 920 1555
Scotland- 0141 951 5360
There is already Chorley, Manchester and Reading on your site and these contact numbers are:
Chorley- 01772 819600
Manchester- 0161 608 7790
Reading- 0118 987 4088
Sarah Matthewman, Marketing and Clinical Relations Assistant, Synexus Clinical Research PLC,
24 Eaton Avenue, Matrix Park, Buckshaw Village, Chorley, Lancashire, PR7 7NA.
Telephone: +44 (0)1772 819628
Email: Sarah.Matthewman
synexus.com
Ekbom Support Group in the news
Details are here in this Sunday Times report:
".... cure for 'restless legs' was an unlicensed drug".
To counter this report I think it is worth pointing out that the aim of the Ekbom Support Group has always been to " make the condition more widely known to the medical profession and the families of sufferers" (this is an extract from our web site welcome page) so it is hardly surprising if we mention the fact that dopamine agonists (used for the treatment of Parkinson's disease) in many instances work when used for restless legs. See here (under Drugs) for our mention in the treatment pages of this web site. Neither is it surprising when the pharmaceutical companies mount the necessary trials to enable their medications to be used (prescription approved) for the treatment of restless legs. Moreover we also know how many have contacted us to declare with delight that their restless legs condition is recognised and that help is available.
Of course it is right that some members of the medical profession should wage war on bogus medical conditions that they believe are manufactured from thin air by pharmaceutical companies to help enhance sales of their medicines. (This article was among the first to take this line). But we know that restless legs is a terrible affliction and not made up for us by the pharmaceutical giants.
We should
also point out that Dr. Chaudhuri and his colleagues, Professor Per Odin and Professor C.Warren Olanow, who together edited the
book "Restless Legs Syndrome", published in 2002 , reported that Ropinirole and
Pramipexole are considered to be the first-line treatment for RLS, because they
have less side effects and decreased risk of augmentation. This was four years
before they or other formulations were licensed for restless legs. So we could not be accused of favouritism
of one drug company over another and certainly not for any honoraria. After all,
anyone who has found relief from RLS with drugs or otherwise is free to advertise
it on this website and our
Forum - as they do so.
Moreover this page
from RLS:UK has been on the web for considerable time and it includes the
following which is a quoted extract:
When a member asks which drug we consider is best,
we advise them to consult their GP, especially if they are on other medication.
But if they ask us which drugs we use we let them know but still tell them to
consult their GP as what may suit one person may not suit another.
This contribution appeared on our forum and I thought that our co-ordinator (Eileen Gill) might like to see here how much support she has.
On another point
completely, I have read the article in The Times and as
one affected severely by RLS I would like to say that I am grateful for Adartrel and
GSK for developing it. It is working for
me so far and I am grateful for any respite I can get. Thank you Eileen for your support too.
Why is there so much resistance from various circles to any support for RLS. I had never heard of
it until I went to the doctors and stated my symptoms so I could not have jumped on any
bandwagon. Every time I read these articles my heart sinks.
(This whole item was contributed by the ESG web master)
Updated
16/8/07