medicalxpress.com/news/2024...
Another study on the genetics of RLS. However, there are no new drug developments, so rather disappointing.
The study says the research will now help to 'prevent' RLS. How??? No new meds are mentioned.
I'm very disappointed. Again.
I read somewhere by Dr Early that the gene had to be prevented when getting pregnant something about a protein attaching itself to the fetus and stopping it. ?
Im sure you are Jules . You must get so frustrated as we all do . Thank you so much for everything you do
I received a link to the paper today (see below) but haven’t read it yet, just a quick look. It seems a follow-up from a 2017 study on genome-wide gene-association study. A Nature publication is very very prestigious, but the first look / quick read didn’t make that clear. More tomorrow.
nature.com/articles/s41588-...
That is a much more detailed paper than ths abridged version I was sent!Interesting that they have listed the drugs that can possibly be 'repurposed'.
Quite a few mono clonal antibody meds AND cladribine, which I'm actually taking now for MS. It's a chemo drug used for hairy cell anaemia.
I also found it interesting that RLS is linked to type 2 diabetes, but wonder if that's due to sleep deprivation, which is a known risk factor! Chicken and egg.....
I'll look Forward to your views Lotte.
It was briefly mentioned on Channel 5 news last night.Doctor basically said what Jools has posted but at least we made the news again.Keep up the good work.
Thanks for sharing.
I'd love to be on one of these 'trials' & am on the research lists but never seem to get asked or picked - maybe should contact direct the research faculties & express my interest - whatcha think 🤔
Thanks for sending the link Joolsg & thanks for the research you do on our behalf
hi Joolsg, thanks for the post, yet another that follows the trend of, What came FIRST, The CHICKEN or the EGG.
Some great news on my front. I’m coming to the end of my second week using 7 day 5 microgram/h transdermal patches. Week 1 absolutely no change in my RLS or sleep pattern. Put week 2 patch on last Friday. All hell was let loose, strong gripping abdominal pains, (apologies but only way to describe it ) followed by explosive diarrhoea for 24 hours, well that kept me awake, not RLS as that had disappeared and as soon as the other trouble had cleared up I had the best uninterrupted nights sleep I can remember. I put the changing of the patch down to the tummy trouble as it coincided with the hit of the new patch, but I suppose it could have been a 24 hour bug. We were away at our Sons at the time and no one else was affected. Anyway still getting excellent sleep no appreciable RLS apart from waking me up in the morning which I can cope with.
Doctor Christopher Murphy who provided me with the initial prescription at Salford Royal Hospital has been an absolute star. It took just 4 days from my initial Private consultation for him to transfer me onto his NHS list, meet him at Salford and collect the prescription. When I think about the time I wasted in the past and the time others are wasting makes my blood boil.
Dr Murphy wrote a very clear forceful and detailed letter to my GP Surgery stating that all his other patients are taking Buprenorphine and being supported by their GPs in the prescribing of Buprenorphine. Guess what, yes you have it., and you can think of all the naughty words you know and they won’t be anywhere near as bad as mine, THEY REFUSED. 🤯🤬 Oh yes all very apologetic with excuses such as, we are not qualified to administer Buprenorphine that is for my Consultant to do, they are sure I will understand, WELL I Bloody Well DONT. I wrote to Doctor Murphy attaching a copy of my surgeries reply and hand delivered it to his private clinic last night. I will attach my final 7 day patch tomorrow evening 7 June. I’m sure we will get around it, oh, my surgery did say that they would issue an emergency prescription to tide me over if need be.
I feel like changing my name to Guy Faulks and putting a barrel of gunpowder in the cellar of my surgery, and blowing it up, Obviously when it’s unoccupied and not like the Houses of Parliament, anyway just a pipe dream as they don’t have any cellars. I hope that statement isn’t construed as an act of terrorism, we are all friends together here and sworn to absolute secrecy 🤣🤣
HipHop1972
It is unbelievable, cruel and barbaric. GPs need to change.I really hope this is the start of a new chapter in your RLS journey.
Watch for the loss of efficacy on the patch. If that happens, you can change to a new patch earlier OR ask for sub lingual pills.
So many people are having to travel to collect a prescription. If the specialist has recommended it, the GP should follow up and prescribe it. It's utter madness.
Thanks Joolsg for reply, so far no tail off in efficiency and no side effects. I hope I didn’t go over the top with my post. But onwards and upwards we all go through such a lot to circumvent rules made be idiots who can’t see beyond their own inadequacy.
HipHop1972 🤗
yes, disappointing.❤️🩹
Interview with University of Cambridge’s Steven Bell, one of the co-authors on the study:thenakedscientists.com/arti...
Chris, here’s an article describing Lamotrigine mode of action, which is one of two drugs mentioned in Jools article ncbi.nlm.nih.gov/pmc/articl...
“Additionally, LTG has been found to have neuroprotective effects, potentially through the inhibition of glutamate release and the enhancement of GABAergic neurotransmission.”
Can we figure out how to do this on our own?
You've no doubt already seen this which was also posted online in March '23:
ncbi.nlm.nih.gov/pmc/articl...
No, but I have now. Amantidine - I would be so willing to be a lab rat and try that one, but I’m dangerous.
Like I’ve said a 1000x before, what you do is what I like best…magnesium…so far at least
Here’s somewhere to get started for the adventurous among us:
tacanow.org/family-resource...
I know we’re not talking about autism here, but if we wait for an RLS nmda inhibitor to be written about and trialed we’ll be waiting a very long time
Help needed with an RLS study in Newcastle Upon Tyne
Sleep studies and RLS
