Opioids: I have been off pramipexole... - Restless Legs Syn...

Restless Legs Syndrome

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Opioids

Yakester
Yakester

I have been off pramipexole for close to two weeks. Then my (new) neurologist started me on carbadopa levodopa which caused extreme anxiety so only took for 4 days. I’m totally miserable. I am wondering what opioids are used and how much. I’m trying to gather information for doctors. Also, does switching the opioids every so often help make them work better as first line med?

9 Replies
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Yakester,

I have taken all the drugs to obtain relief for RLS and wind up with augmentation eventually. As last resort my neurologist put my on Oxycodone 5mg. I take my first dose around 7 or 8 PM and then I usually wake up from the RLS around 12:30-1AM. It takes about 1 to 2 hours to kick in so I do lose quite a bit of sleep but this seems to be the best solution to my issues. I wear a Fitbit tracker and my hours of sleep range anywhere from 4 to 7 hours per night.

LotteM
LotteM in reply to Hoffie

Hi Hoffie, I wuickly switched to the extended release (ER) version of oxycodon. It relieves most of the morning/daytime hangover that the ‘normal’ oxycodon induced in me. And it suppresses the RLS symptoms rather well, although not entirely, but to very livable level. Idea?

Hoffie
Hoffie in reply to LotteM

I will ask my neurologist about it next visit. Thanks for the info

Try this website...there is a lot of good information

rlshelp.org/rlsrx.htm#Sedat...

Hello Yakester.

I am on a low dose of pramipexole, so my comment may not be wholly appropriate.

Methadone, of you can get it, is thought by several specialists to be the Rolls Royce of opioids for RLS.

As I will not increase my DA dose, I have methadone syrup as a back-up, and I take 5 to 10 mg when necessary. It is long-acting and causes no euphoria. The chances of addiction are very small at these doses. and for RLS patients is not an issue. It works within twenty minutes, and the relief is absolutely wonderful.

There are many up-to-date sleep experts who are now considering opioids as first-line treatments.

It is more than possible that, as pramipexole causes depression for you, the alpha-2-delta ligands will be even worse. And for many, the weight-gain is really problematic.

Yakester, if you have augmented on pramipexole ( and also ropinirole? and rotigotine/Neupro?) before, that you are bound to augment on carbodopa/levodopa. Because, actually, carb/levo has a much higher rate of augmentation than the (other) dopamine agonists. Your neurologist is clearly ignorant about RLS and its treatment. Carbo/levon only gets prescribed these days for incidental use, certainly not for daily use. And it has been like that for quite a few years.

Read this article sleepreviewmag.com/2015/02/.... The current practice is to prescibe alf2deltigands like gabapentin or pregabalin and/or a low dose opioid. Tramadol may work well, but runs the risks of tolerance and a low risk of augmentation as well. Oxycodon (low dose only in the evening) is thought to be quite safe in that way, although people on here have reported tolerance. Here you can find the key paper on te use of opioids for RLS: mayoclinicproceedings.org/a...

Read read read. Also the rls-uk.org website, the Johns Hopkins website ( including other pages than those of the following link, see menu on left side) hopkinsmedicine.org/neurolo... and the rls.org site are good starting points. On the latter site, quite a few pages are only available to members, but on the ‘open’ pages there is still a lot of good info.

And browse through this forum! There is a search function, and ‘augmentation’ and ‘dopamine agonist’ or ‘DA’ or the names of the meds are good key words.

Then have a fierce talk with your neurologist. If she/he doesn’t want to listen, leave! Your gp, if she/he is a good listener may be perfectly able to help you, provided you help supplying the information.

Work to do! Good luck and keep us posted. Oh, and well done for quickly stopping the carbo/levo.

rls_optimist
rls_optimist in reply to LotteM

Hi, Yakester. There are several wise replies here. Lotte's is very informative. Please, please read the mayoclinic link she provided, re: best practices for opioid use in RLS patients. Published just this year, it is fast becoming the bible for patients and doctors alike. It provides lots of evidence, and gives dosage ranges for RLS folks.

Two very effective opioids are extended-release oxycodone (OxyContin), and you can get it combined with Naloxone, which helps avoid the constipation problems. Methadone is perhaps the one most favored by most RLS experts (and the paper's authors), for several reasons. I find it very helpful, and for myself, it doesn't disturb (prevent) sleep as much as oxycodone (although I have not tried extended-release version). But as you can see from other postings, different opioids affect sleep in different ways, depending on the individual. Good luck!

The RLS pub that is linked to below is good. One of the authors is my dr. He feels confident that there is none I’d the tolerance or build up if dosage with low dose opiates that lead to addiction. I signed a pain contract, follow it strictly, and the only problem I have is that opiates keep me awake and I have to take sleeping meds to counteract it. But I’d rather lie awake in no leg distress than toss than wave my legs in the air all night.

I have had almost total remission of symptoms on 5mg Methadone and 50mg Trazodone. Thats all you need!

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