Appreciate some guidance : Hello After... - Restless Legs Syn...

Restless Legs Syndrome

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Appreciate some guidance

Bikerguy1 profile image
7 Replies

Hello After MANY years, I am finally fully off pramipexole ...(Been nearly 2 months now). I find that the nasty augmentation symptoms that would start up early afternoon and go through the night have gradually subsided to the point where I can actually sit still and read a book or watch TV in the evening!

I'm currently taking 375mg of pregabalin spread between 7pm and 10pm. This is the only meds I take for rls.

The problem I have is I am still restless during the night and am getting very poor sleep quality! I wake up very tired and my smart watch always records zero sleep...I know it works because it records when my wife tries it). She also can't sleep with me because of all the restless movements. I'm just so tired of being tired! Some days I just have to go back to bed after just getting up.(Iron was recently checked and in normal ranges)

I have a doctor appointment soon and was wondering if buprenorphine (or other opioid) might help me get back to a normal?

How does one transition from 375mg pregabalin to an opioid like buprenorphine??

Any suggestions are appreciated!

Bobby

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7 Replies
Joolsg profile image
Joolsg

You start the Buprenorphine pills and if they work, great.You can then slowly reduce pregabalin. As you've only been taking pregabalin for 2 months, you can reduce by 25mg every 3 or 4 days.

I reduced pregabalin extremely slowly, over 6 to 9 months to ensure I didn't get any withdrawals.

Bikerguy1 profile image
Bikerguy1 in reply to Joolsg

Thank-you!!

Claire_lc profile image
Claire_lc

Hi Bobby, first of all well done for getting yourself of Pramipexole. The worst is over!

I was in the same position as you 18 months ago, taking only pregabalin for the RLS, which remained stubbornly awful at night, even though like you the symptoms were less during the afternoon and evening. I spent well over a year like that, seemingly making no progress at all, and the pregabalin only taking the edge off the RLS.

Where do you live? The answer to that very much affects your chances of being prescribed Buprenorphine. In the US, it seems to vary according to state; in the UK according to NHS area.

There’s a growing body of information on the forum about how to maximise your chances of getting a prescription, but even then people are repeatedly coming up against brick walls.

I can’t tell you how hard I worked to secure a regular prescription, but it’s been worth the effort. A tiny dose has completely resolved my symptoms. Let us know where you are and hopefully somebody here will be able to guide you.

Good luck!

Bikerguy1 profile image
Bikerguy1 in reply to Claire_lc

Thanks for your reply and valuable information!I live in Ontario Canada near Toronto.

Thanks!

WendyBea profile image
WendyBea in reply to Bikerguy1

Hi, I’m also in Ontario. I’m slowly reducing Pramipexole and have added Gabapentin instead, but what really saves me is Codeine 30. I have a prescription for 4 per day, 2 in early afternoon, and 2 at bedtime. I hope this helps. Huge congrats for getting of Pramipexole!

RiversW profile image
RiversW

Bikerguy,

Though it's very difficult to restrain myself, I won't go into a long winded account of my escape from dopamine agonist prison. If you are interested you can read my old post.

I will just say that I started buprenorphine about 4 month ago and not only was it very helpful to me during the withdrawal process but I have be relatively free of RLS since. For me it has been a godsend. I am still working on ridding myself of some side effects from the buprenorphine but for the most part I am very happy with the results.

Good luck! You will get there too.

SueJohnson profile image
SueJohnson

My normal advice is by 25 mg every 2 weeks. It's possible you can reduce more quickly but if you start getting other symptoms then slow it down.

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