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Restless Legs Syndrome

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Pramipexole supplies

Johnnycomelately99 profile image

Festive greetings to fellow sufferers……

I have been having difficulties in getting my Pramipexole prescription lately. Pharmacy2U say their suppliers have said that they are out of stock of this drug and I now find many local pharmacies are too! I have been using Lloyds Princess Risborough just recently but have now used up their stock.

I have been taking Pramipexole for 14 years ( 1 180 micrograms tablet per day). Recently I have been getting more episodes of spasms in my legs and increased restlessness but have resisted the temptation to increase my dosage for fear of augmentation.

Any suggestions as to where I go from here?

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Johnnycomelately99
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11 Replies
SueJohnson profile image
SueJohnson

It sounds like you are already suffering from augmentation. But you can't come off it if you don't have enough supply of it to properly wean off it. You could switch to ropinirole. The equivalent dose would be .75 mg. This would also put off augmentation for awhile.

Johnnycomelately99 profile image
Johnnycomelately99 in reply to SueJohnson

Thanks Sue

Joolsg profile image
Joolsg

That's really concerning. If Pramipexole is in short supply, thousands in the UK will be thrown into forced dopamine agonist withdrawal.Any withdrawal from Pramipexole should be done very, very slowly usually with the help of an opioid.

Ask your GP for a prescription for Ropinirole or Rotigitone patch in the meantime to cover any medication shortage.

It may be the universe telling you it's time to get off it, especially as you're showing signs of augmentation. After 14 years, it's inevitable your D1 receptors will eventually flare up from over stimulation.

Discuss a withdrawal plan with your GP. You normally need to reduce by half a 0.088 pill every 2 weeks. You will need to start replacement drugs 4 weeks before last dose of Pramipexole. Pregabalin is the usual replacement, starting at 75mg (50mg if over 65) and increasing to around 150-200mg.

Serum ferritin should be above 100, preferably 200 so ask for the full panel fasting bloods. Raising ferritin can help settle SOME cases of augmentation.

I hope you can sort it out, I remember suffering panic years ago when Ropinirole was in short supply.

Johnnycomelately99 profile image
Johnnycomelately99 in reply to Joolsg

Thank you for your response.

Joolsg profile image
Joolsg in reply to Johnnycomelately99

Just asked my pharmacist here in London & he confirmed he can't get Pramipexole either. It's a nationwide issue for ALL medicines. Gov very quiet.....

Shumbah profile image
Shumbah in reply to Joolsg

This might force doctors hands to prescribe opioids

Joolsg profile image
Joolsg in reply to Shumbah

It might but here in the UK, there is still the concern about 'addiction' and 'tolerance' and UK doctors are reluctant to accept trials,research and evidence from the USA that proves tolerance doesn't happen often and addiction is rare unless there's a history of abuse. I send links to the Massachussetts Opioid Study often but unless and until they do trials of various opioids for RLS, UK doctors will continue to put up barriers.

SueJohnson profile image
SueJohnson

To add to Joolsg suggesting you have your ferritin tested as she says when you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice.

David7 profile image
David7

Are you taking any other medicines with the pramipixol?You could add Gabapentin 1 hour before bedtime. Dosages range from 100mg. to 600 mg. as needed. Check with your doctor as this is first line treatment for RLS and will help nicely.

All the Best,

David

Moonwalker1967 profile image
Moonwalker1967

I still have some Pramipexole here for emergency. I could pass those onto someone I guess. I am living in the UK near Sheffield. Augmentation was a nightmare when I came off those.

Mitch011067 profile image
Mitch011067

that’s worrying - had this a couple of months ago - my local chemist couldn’t get it - was in a real panic - chemist near work in London fulfilled the prescription but now worried - given a post above that may now not be a solution.

Thanks for the heads up - going to contact GP

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