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Restless Legs Syndrome

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pramipexole shortage

Grumpdad profile image
17 Replies

I have taken pramipexole for RLS over 15 years. Before that I took Ropinirole, which lost its effectiveness. There is hardly any 0.18 mg (180 mcg) left in any Leeds pharmacies . I got just half my prescribed amount today. Without it I shall never sleep again, but be a writhing mess. One reads in the papers about wonderful new (and no doubt very expensive) treatments for a range of diseases. Why can they not continue relatively inexpensive and proven life-changing treatments such as Pramipexole. I just hope it has not been discontinued.

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Grumpdad
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17 Replies
Joolsg profile image
Joolsg

I'm so sorry to hear about this. It's unacceptable. Sadly, since Brexit there have been huge shortages of ALL meds.Stopping Pramipexole can be extremely dangerous so, if you can't find your supply, ask your GP to prescribe either Ropinirole or Rotigitone ( Neupro patch). Otherwise you'll go straight into unbearable withdrawal.

It may be serendipitous as you clearly failed Ropinirole and are very likely to experience augmentation ( severe worsening of RLS caused by dopamine agonists). Have a look at the description of Augmentation on RLS UK website. In that case, you could take advantage of the shortage & consider a slow reduction of Pramipexole and a switch to pregabalin.

Also ask for updated bloods to ensure serum ferritin is above 100, preferably 200 as that can resolve a majority of RLS.

SueJohnson profile image
SueJohnson

To expand on what Joolsg said Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. And improving your ferritin is one of the ways to help avoid augmentation.When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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 some advice.

ChrisColumbus profile image
ChrisColumbus

I don't know enough about the supply chain in UK pharmaceutical businesses, but there are several sources for every size of pramipexole tablet and I'm surprised that they are all out of stock at the same time. bnf.nice.org.uk/drugs/prami...

ChrisColumbus profile image
ChrisColumbus in reply to ChrisColumbus

There are a couple of databases for health professionals where they can check shortages. Hopefully your GPs practice manager is a subscriber to one of these and could check availability for you

Madlegs1 profile image
Madlegs1

Similarities situation here in Ireland for Oxycontin 10.Don't know about Pramipexol.

There are sites that inform about shortages and their duration.

Look up on NHS website.

Snidz profile image
Snidz

I'm in the same position up here in Cumbria. I take 0.18 and 0.35 at different times of day. Apparently there is no shortage of the 0.35s so my GP has been prescribing more of the 0.35s which I break in half thus giving me near enough the 0.18.

Dotmowatee profile image
Dotmowatee

No shortage of the 0.088 mg of Pramipexole in Plymouth.

RLSofManyYears profile image
RLSofManyYears

I got the last Pramipexole where I stay and that is 4 pharmacies. They all said their suppliers had none. Fortunately I'm weaning off it as my consultant has put me on Melatonin to see how that works.

grassgree profile image
grassgree in reply to RLSofManyYears

Melatonin is known to make RLS symptoms worse.

RLSofManyYears profile image
RLSofManyYears in reply to grassgree

Well so far it has really improved my sleep!

grassgree profile image
grassgree in reply to RLSofManyYears

No reason to stop then! Just be aware.

Mitch011067 profile image
Mitch011067

I had this a couple of months ago - was in a right panic - switched from my local town pharmacy to a big Boots in London - no issues at all

Enable profile image
Enable

I have been on pramipexole 0.18 for about 8 years. I got it last week tho I had to go back twice because of no stock. I'm worrying now in case it's not resolved.

tagaxel profile image
tagaxel

You should let your doctor know that even at low doses and abrupt withdrawal from Mirapex/pramipexole can cause DAWS (dopamine agonist withdrawal syndrome). It can be as difficult to get off pramipexole as heroin or cocaine. I am tapering from pramipexole because, like all dopamine agonists, it causes augmentation – it not only stops working on the RLS but it makes it worse. The best thing would be to start tapering now and switch over to Horizant to control your RLS.

Millersman profile image
Millersman

It’s just as bad in the South. I had a terrible job getting my last prescription filled in Dorset. I’ve got another prescription request in now and I’ll be chasing that to see what the current situation is.

Nikon- profile image
Nikon-

I too have just been told by my pharmacist that there is a shortage of this medication and they can only provide part of my prescription 🥴

SueJohnson profile image
SueJohnson

Let me start over on the conversion. .18 pramipexole = 1 mg ropinirole.

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