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Restless Legs Syndrome

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Neurologist appointment teaching hospital Sheffield

Moonwalker1967 profile image
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I saw professor Oliver Bandmann who advised that he's slowly running out of ideas, since Pregabalin and Gabapentin didn't work for me after augmentation. I got a prescription for Targinact 5mg/2.5mg from him.

I hope that my GP will prescribe this on repeat and that this will help me to get my life back. 🤞

What are your thoughts, please!

Thanks for taking the time to read this:)

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Moonwalker1967
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SueJohnson profile image
SueJohnson

I remember you said your appointment was a year out so you waited a long time for it. On the Targinact even though it is a long release form it still needs to be taken every 4 to 6 hours or you will have mini withdrawals so be sure you got enough to avoid this. He also gave you a starting dose. The usual effective dose is 10 to 30 mg according to the Mayo Clinic Updated Algorithm.

Dotmowatee profile image
Dotmowatee

I am on Targinact and am in Plymouth. The drug is licensed for restless legs in the Uk. I take one 5mg/ 2.5 naloxone tablet at midday and another at 9 pm . It works perfectly for me and no break through. Good luck.

Midnightblues profile image
Midnightblues in reply toDotmowatee

Hi, I live in Cornwall. I'm sure I asked you some time ago ( I can't find the thread) but did you see a Neurologist at Derriford and was it NHS or privately? I'm experiencing a lot of resistance here from GPs even though I had some success with an infusion they're pushing back against repeating it, and the Neurologist prescribed Clonazepam which seemed odd as I already have access to Diazepam and only take this when I'm absolutely desperate and sleep deprived after several nights. I've tried most other medications, including Ropinirole which I weaned myself from with great difficulty, and currently trying to wind down from Pregabalin. It's ineffective and as I have arthritis in my feet the weight gain is unacceptable. Plymouth would be so convenient. Many thanks, and apologies for bothering you with this again!

Dotmowatee profile image
Dotmowatee in reply toMidnightblues

No problem ! The neurologist in Plymouth was useless. I paid to see Robin Fackrell in Bath Circle hospital. I have put on weight with pramipexole which I hate and I don't sleep. I discovered that Targinact which is a long acting opioid is licensed for rls in the UK. It works for me. If your doctor won't prescribe it report him or her. Ask them to access Rls.org.uk. let me know what happens.

SueJohnson profile image
SueJohnson in reply toMidnightblues

I may have recommended this to you before but there is Doctor Wayne Thomas haematologist in Plymouth who will arrange an iron infusion.

bookish profile image
bookish

Hi, I know you said you were using magnesium, but what were your last vit B12 and folate test results and are you already gluten free? Cheers

Joolsg profile image
Joolsg

I am dismayed that a neurologist says he's 'running out of ideas'. That to me means he is not keeping up to date with RLS international news and treatments.Targinact is fine for some. But not at 5mg.

Targinact is Oxycontin with a small dose of naloxone to prevent constipation.

However- many on here report that it causes rebound RLS as the dose wears off. It is supposed to last 12 hours. It doesn't.

It lasts 4 to 6 hours and when it wears off- many patients get increased withdrawal RLS.

So show him the Mayo Clinic Algorithm and also the prescribing info. Targinact is supposed to be taken twice a day. So Dr Bandmann should be telling you to take 5mg twice a day.

I suspect 5mg will not help. If 2 x 5mg doesn't helo then ask for 4 x 5mg taken every 6 hours.

If that doesn't work- tell Dr Bandmann that methadone or Buprenorphine are highly effective. They have a long half life and therefore work very well for RLS.

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