Turkey - Two studies on RLS & they st... - Restless Legs Syn...

Restless Legs Syndrome

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Turkey - Two studies on RLS & they still prescribe Dopamine agonists.

Joolsg profile image
14 Replies

Two new research studies on RLS from Turkey. One showing a link to Overactive Bladder, the other showing electrophysiological changes after administration of pramipexole in NEWLY diagnosed RLS patients.

Depressingly, another generation condemned to permanent damage/augmentation/ICD.

pubmed.ncbi.nlm.nih.gov/400...

pubmed.ncbi.nlm.nih.gov/400...

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Joolsg profile image
Joolsg
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14 Replies
Kakally profile image
Kakally

just terrifying and tragic and criminal…..

SueJohnson profile image
SueJohnson

The first reference in the article actually mentioned a study that said α2δ-ligands should be 1st line treatment and mentioned ICDs but of source was ignored.

Joolsg profile image
Joolsg in reply toSueJohnson

Yes. Sadly, Istanbul hospital tends to follow Germany where dopamine agonists are still first line treatment.Same here in the UK. DAs are still first line treatment.

We still have such a long way to go....

sangeet1 profile image
sangeet1

my bladder became even more over active, the same time as augmentation happened

HipHop1972 profile image
HipHop1972

Oh Joolsg, I don’t know how you stay sane with reports like that from countries that have access to all the up to date data on DAs and the results of prescribing to RLS sufferers, I realised that not everyone suffers the side effects but the majority will in time and then they will be truly stuffed

Kind regards HipHop1972

YoghurtLover2 profile image
YoghurtLover2

oh no … if it is permanent damage am I ever going to get rid of RLS?

purple-flowers profile image
purple-flowers

I have severe RLS. I have tried everything there is. At one time I was taking 8 .088 Pramipexole which took me six months to come off. I also have an overactive bladder. Do I understand from your comment that Pramipexole and an overactive bladder are linked?

Joolsg profile image
Joolsg in reply topurple-flowers

RLS and Overactive Bladder are linked.So whatever treats the RLS will treat the OAB.

However- there may be other causes.

purple-flowers profile image
purple-flowers

many thanks for your reply. I’m on long acting OxyContin for RLS which unfortunately does not help my OAB. Nothing I take helps it.

Joolsg profile image
Joolsg in reply topurple-flowers

It might not be linked to RLS. Lots of reasons for OAB. Usually spinal cord damage.

purple-flowers profile image
purple-flowers in reply toJoolsg

Oh how interesting! I had failed back surgery 25 years ago and my sciatic nerve was damaged.

karjbee profile image
karjbee

very interesting. I’m not newly diagnosed. But as I think about it around the time I switched to pramipexole I started having stress incontinence. I had a bulking procedure. Lasted a year had a second procedure after a year. Still an issue. I was thinking of surgery. But you never know I’ll wait until I’m off pramipexole see if it stops. Just fascinating and frightening what these drugs can do , yet for me it was a miracle in the beginning. Reminds me so much of thalidomide. .

Joolsg profile image
Joolsg in reply tokarjbee

The article actually is about RLS and OAB being linked and that Pramipexole treats both conditions.So if you took Pramipexole - it should help Overactive Bladder. But not stress incontinence which can be helped by pelvic floor exercises.

And don't let them use plastic mesh/slings to help stress incontinence. My friend ran the UK campaign to get it banned after it severed bladders/internal organs.

Find a good pelvic floor physio or buy a machine that helps weak pelvic floors.

karjbee profile image
karjbee

thanks. I’ve been on the fence about the mesh. My gyno really advises against it. Oh I see it was prescribed for OAB. Still interesting. Thank you for sharing them. You never know when something may shake loose.

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