When will end?: A week ago I moved from... - Restless Legs Syn...

Restless Legs Syndrome

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When will end?

Theonlypetied profile image
4 Replies

A week ago I moved from 150 to 200mg of Pregabalin. I thought I could have expected a marked improvement in the PLMD. Nope, still off the charts. Tonight I move up to 250mg. Bloody hope things change soon or I’m going to seriously injure myself or my wife. The other night she thought I was doing some exercises one of my legs was flinging so far up in the air. And I was asleep! Please tell me this will end soon????😭

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Theonlypetied
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Joolsg profile image
Joolsg

Sadly, it can take months for the RLS and PLMD to settle after withdrawal from Pramipexole. You have only just stopped Pramipexole. Withdrawal lasts a minimum of 3 weeks.200mg is the average dose of pregabalin. You may need more.

Also, ensure your serum ferritin is above 100, preferably 200.

You may also find pregabalin doesn't work for you. Dr Buchfuhrer and Berkowski believe this is because the dopamine agonists cause permanent damage.

If the PLMD doesn't settle after you increase to 300 or even 450, you may need to speak to your doctor again and ask them to prescribe a low dose opioid, as per the Mayo algorithm.

Theonlypetied profile image
Theonlypetied in reply toJoolsg

Thank you. I’m in Codeine anyway.

Joolsg profile image
Joolsg in reply toTheonlypetied

Codeine is the least effective opioid. You may need a stronger option, like oxycodone or morphine or Buprenorphine. I wasted 5 years on pregabalin and Oxycontin getting no more than 4 hours sleep a night. My neurologist told me that was the best I could expect..Sadly, I believed him.

I wish I hadn't!

For refractory cases, Buprenorphine and methadone work very well but the UK medical Profession can be very reluctant to prescribe them.

Tecumsehmoe profile image
Tecumsehmoe

150 mg of Pregabilin combined with 0.5 mg of Clonazepam served me well for years -- maybe more than a decade. They're now not much better than a bar of soap however.

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