Hi, I've posted a few times about my trials of getting off the Neupro patch. It took almost 3 years and at the end of 2024 I was finally off of it. Around the end of November, I started on pregabalin 25 mg, then up to 100 mg but had already been on and still am, on methadone for 10 years. At present I'm on 20 mg. When I was first off of Neupro I had very good results, actually had 5 days/nights with no RLS but it didn't last. It's been increasingly getting worse. Now, I rarely ever have a night without multiple RLS attacks. The initial side effects of pregabalin have never worn off (in over 3 months time) and now I'm developing a ravenous appetite so I've put on weight pretty quickly and I'm afraid it'll just get worse. I need to be off pregabalin. It was suggested I try gabapentin but I've been on it in the past with little result. There HAS to be something else out there? I've been on approximately 18 different meds in the past 25 years with the only ones that worked being DAs and of course, that was temporary. I'm lost and discouraged, I need my life back. I can barely function on pregabalin. I'm sleepy all the time, cannot think straight, cannot focus on or remember anything. I really need to get off this drug. I don't think these side effects are going to go away any time soon. My Mayo Clinic neurologist has run out of ideas. Any other suggestions? You guys have been more help and support than any place else I've been. So thank you!
Discouraged: Hi, I've posted a few... - Restless Legs Syn...
Discouraged
This is an insidious disease.I suggest you try Buprenorphine.
You can make a straight overnight swap from methadone to Buprenorphine.
It's similar to methadone ( it has a long half life). Mayo algorithm sets out average effective dose.
Reduce pregabalin very slowly to avoid withdrawal symptoms.
Thank you. My neurologist had suggested Suboxone. Is it similar? I've never heard of it.
Yes. It's Buprenorphine with naloxone added.The naloxone can help prevent constipation and nausea.
Average dose in UK is between 0.4 and 0.8mg because we have smaller pills.
In the USA- the pills are higher strength and difficult to cut- so the average dose is higher.
I hope it helps you.
Thank you!
"Effective pregabalin doses are usually in the range of 150 to 450 mg daily." Mayo Algorithm.
But if you can't tolerate pregabalin and you found gabapentin ineffective (but were you taking enough - "Most RLS patients require 1200 to 1800 mg of gabapentin daily, but doses up to 3600 mg daily can be used" also from Mayo Algorithm). And did you try for at least 4 weeks after coming off rotigotine (Neupro) or pramipexole (Mirapex)?...
... But gabapentinoids can be ineffective after augmenting on a dopamine agonist, so a low dose opioid may be the answer: as Jools says try swapping to buprenorphine instead of methadone, and reduce pregabalin by 25mg every 2 weeks.
Thank you, it's been so long since I was on gabapentin that I do not remember the dosage but it was nothing like you'd mentioned. It may have been as low as 400 mg. My neurologist had suggested Suboxone but in reading up on this drug, I'd have to be off pregabalin first.
You don't have to be off pregabalin unless you have breathing issues and the same thing would be true on methadone so you obviously don't.
You're right!
As Jools references, Table 4 from Mayo Algorithm showing starting and effective doses of recommended opioids for RLS: mayoclinicproceedings.org/a...
To come off pregabalin you need to do so very slowly to avoid withdrawal effects. Reduce by 25 mg every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.
You say gabapentin didn't work. Did you take it before you were on any DA?
I've been on DAs forever so I was probably on Mirapex when I tried the pregabalin.
I had my prescription to pregabalin changed to 25 mg so I can now start to come off it.
I use suboxone sublingual films (I'm also in the US). Typical dosage is 2mg buprenorphine with .5mg naloxone. The strips are easy to cut with a razor, so it's much easier to get smaller doses. (I use .4mg - so 1/5 of a 2mg strip.)
Thank you for the advice!
It is always good to start low, such as with a dose Twitcher suggests. But given that you are/were on 20mg methadone, you may need a bit more. I assume the sublingual strips work as fast (20-30min) as the sublingual pills we use in the EU countries. If so, you can start low, and add if needed.
I take methadone and I don't want to go any higher and don't have a doctor willing to switch to Suboxone and I do sometimes have breakthrough RLS in the night. I have developed multiple strategies. First, are you drinking enough water, you probably need more than the average amount and even if you have to get up in the night to go to the bathroom, it is worth it. I also take electrolytes if I have been exercising that day. Also, I have jigsaw puzzles I do in the night and that will ofter distract me and get me back to sleepiness while the meds kick in. I have a small massager that I use if I wake up with RLS and that helps. I also have acupuncture cups that I put on my legs for a while before bed. I also massage my legs with MSM cream before I go to bed. If all else fails, I turn over and sleep on my stomach. I also take baclofen which helps me sleep although some say it makes it worse. I take 200 mg. of magnesium, 25 mg of iron bisgylcinate with Vt. C before bed but 2 hours away from the magnesium (this may be the most important thing), two Seriphos tabs and Health Booster (a vitamin K supplement). All for these things are worth a try. I would try the iron bisglycinate and the pulse massager first. You may be able to work around the RLS attacks with some of these strategies.
Thank you violetta. That's a lot of suggestions! I KNOW I don't drink enough water, but still get up a couple times every night. I do take a lot of magnesium....1600 mg almost every night (mostly for constipation). I've been on baclofen before but it didn't seem to help. I've been on iron for 2 years. I'm not sure what a pulse massager is but can check into that. I sometimes have RLS so severely that I can't stand still at all, in fact even while pacing around the room it can drop me to the floor by jerking my leg out from under me. Once, I had RLS for 5 hours straight and was walking the entire time. It just would NOT stop. I'm not sure my neurologist believed me because "it should have stopped while I was on my feet". I have a really bad back so sleeping on my stomach is not an option. I'm not sure what acupuncture cups are but I had acupuncture a few years back and it did nothing for the RLS. Anyway, you've given me a lot of possibilities!
need help from someone with similar experiences with pregabalin tapering 
Weaning off Neupro Patch
Coming off Neupro patch
Switching from three meds to one (Pregabalin, clonazepam, and ropinerole) - I hope! I hate ropinerole! I need help. 
Finally some relief!
