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Restless Legs Syndrome

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No luck

Loopylegs profile image
10 Replies

Not looking good guys on getting the buprenorphine here in Ireland, my doctor prescribed it for me but the pharmacist just rang me to say that its not approved for rls treatment and needs to be approved by the Health service executive, which could take weeks and may not be approved, just wondering if anyone in ireland has been prescribed buprenorphine for rls?

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Loopylegs profile image
Loopylegs
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10 Replies
SueJohnson profile image
SueJohnson

I believe Jelbea does. You might want to message her.

Joolsg profile image
Joolsg in reply to SueJohnson

Jelbea is in N. Ireland, not Ireland. N.Ireland is part of the UK.Jelbea's pharmacy has also just refused Buprenorphine and will only allow Temgesic ( which makes ZERO.sense as it's the same active ingredient with a much shorter half life causing mini opioid withdrawals in the day).

Joolsg profile image
Joolsg

Aagh! Buprenorphine isn't licensed here in the UK either but if the GP prescribes it, the pharmacist fulfills the prescription. I have no idea how you work round this.Can the doctor prescribe 'off licence' and agree to monitor?

Loopylegs profile image
Loopylegs in reply to Joolsg

I won't know until next week now as doctors are off for the weekend, not looking good, my doctor already asked if I'd go on a neupro patch and I refused, I said I want nothing more to do with DAs, why is it so hopeless to get treated for rls in Ireland, anyone would think I just wanted to get high, its probably easier to get heroin on the street than it is to get buprenorphine legally, I just want to be able to sleep.

Joolsg profile image
Joolsg in reply to Loopylegs

It's infuriating!!!Same here in UK.

Buprenorphine has the LEAST risk of abuse or addiction of all opioids.

Its long half life makes it ideal for RLS.

I'm about to start a UK campaign to raise funding for Buprenorphine trials for RLS so it can be officially licensed.

I'm talking to a team next Wed who may be able to do the trials.

In my experience, the ONLY person who knows anything about RLS was a nurse I spoke to at my local addiction clinic. I wanted to see if they would prescribe methadone or Buprenorphine for RLS patients.

Do we have to become heroin addicts first to be treated effectively??

MADNESS.

It's a good job I haven't been drinking or I would be swearing on here.

Loopylegs profile image
Loopylegs in reply to Joolsg

I haven't drank for 3 months Joolsg because it drives my rls mad, but I'm on my 2nd glass of wine and I'll suffer the consequences later!

TheDoDahMan profile image
TheDoDahMan in reply to Joolsg

"I wanted to see if they would prescribe methadone or Buprenorphine for RLS patients." Bless you, Jools! Even here in the US, I've wondered the same thing. Did you get an answer?

Joolsg profile image
Joolsg in reply to TheDoDahMan

Sadly no- the addiction clinic requires a referral from GP usually and they only treat those addicted to street drugs. I did explain that 'addiction' to dopamine agonists was just as bad and the withdrawal a lot more brutal.But the nurse was the FIRST medic I've ever spoken to who knew all about RLS and how hellish it is. He explained it was the reason a lot of patients fail to get off heroin. The RLS caused by opioid withdrawals is too awful, and they go back on heroin. He also knew about dopamine agonists and augmentation so it was great to speak to a medic with knowledge for a change.

Pippins2 profile image
Pippins2 in reply to Joolsg

Good luck on Wednesday Joolsg and on behalf of every sufferer I want to say thankyou for the all the hard work and time you put in on behalf of all of us .You're amazing 👏 xPipps x

Joolsg profile image
Joolsg in reply to Pippins2

Aw Pipps, You were the one who got me off Ropinirole and helped me so much. I remember you telling me to 'pay it forward', so this is for you!Hopefully, if Buprenorphine is licensed, it will help all those who fail pregabalin & gabapentin because their dopamine receptors have been fried by DAs.

X

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