Hi, I'd written 2-3 months ago about trying to get off the Neupro patch. I'm also on 20 mg methadone. Thanks for all the helpful suggestions! I've been off of Neupro for about 6 weeks after being on it for nearly 10 years at 4 mg. I'm on pregabalin (100 mg) and I think it helped? Don't really know. It does cause me some bad side effects though, I can barely get out of bed in the morning, I have brain fog, lack of balance and coordination (basically I'm a zombie) until about 1-2:00 in the afternoon. I can't live this way! I have no life because I can't drive when I'm that way, all I want to do is sleep, can't think very well, can't even walk a straight line. I really need to get off pregablin but don't what to use in it's place. I'm still having RLS a lot at night so the lack of sleep doesn't help. Like I said, this has been been happening for 6 weeks. My family doctor has no ideas, he doesn't know anything about RLS, my Mayo Clinic neurologist doesn't seem to have much for me either. (I'm in the US) I don't know where to go from here. I had heard that augmentation can last awhile (and for some, it never goes away!?!) Any suggestions?
Off Neupro but now what? : Hi, I'd... - Restless Legs Syn...
Off Neupro but now what?
You can increase the methadone. According to the Mayo Algorithm the usual effective dose is 5 to 20 mg.
You can try switching to gabapentin from pregabalin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
Multiply the pregabalin amount by 6 to get the correct dose which would be 600 mg. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
If you have the same side effects then you need to slowly come off it to avoid side effects. Reduce by 100 to 200 mg gabapentin or 25 mg pregabalin 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.
I've been on gabapentin in the past. It didn't do much for me. As for pregabalin, I could never handle 600 mg (I'd be pretty much comatose), I can barely think straight in the mornings after taking 100 mg at bedtime. I'm on 20mg of methadone now but have been on 25 mg in the past. I couldn't handle that. I had depression and anxiety on it so I cut back.
Oops - I missed that you were already on 20 mg of methadone. One possibility is to switch to buprenorphine.
The 600 mg was for gabapentin, not pregabalin.
If gabapentin didn't do much for you in the past it may have been because you were on a DA at the time or it could be because you didn't take enough or in divided doses.
If you think 100 mg pregabalin "might help" which is only the equivalent of 600 mg gabapentin, just imagine what 1200 to 1500 mg of gabapentin might do. 600 mg is just barely above the starting dose.
Discuss it with Dr. St Louis. He's the expert.
I'm sorry, I mistook pregabalin for gabapentin. Yes, I was on a DA at the time. It seems I've ALWAYS been on a DA. Dr. St Louis, I believe had mentioned buprenorphine at one time but I assume I'll have to get off pregabalin first. So many awful drugs! I wish I was the same as 25+ years ago! No drugs!
You don't have to get off pregabalin first.
It's still VERY early days. You've only been off a very high dose of Rotigitone for 6 weeks. And experts advise taking at least 6 months to get off such a high dose. You did it very quickly.
Withdrawals last months for most RLS patients.
Hopefully the methadone 20mg and 100mg pregabalin will start to cover the RLS in a few weeks/months.
Ensure you get serum ferritin above 200ųg/L. That can help settle RLS.
The pregabalin side effects take around 2 months to settle. The dizziness should stop soon. Only take pregabalin at night- not during the day.
Thanks, but not a happy thought. I absolutely have no life right now. I rarely even leave home because between the pregabalin and lack of sleep, everyone would think I was drunk.😜 And I rarely drive for the same reason.....and I live 20 miles from town.
It will get better. It took me years to find the right solution after Ropinirole.I had an iron infusion- it made no difference. I was on 150mg pregabalin and 25mg Oxycontin.
I still had severe RLS every evening and would be woken twice a night.
But I pushed for Buprenorphine and it worked the first night at really low dose.
You'll get used to pregabalin in around 4 weeks. The dizziness/brain fog will settle.
And your dopamine receptors will calm down.
The methadone should then start to work.
Stay strong. The hellish part is over.
Wishing you strength.
Hi again, thanks for the encouragement but I've actually been on pregabalin for over 2 months although started at 25 mg then jumped to 100 without realizing that my prescription had changed (long story). That was about 6 weeks ago. I wonder if it's doing anything for the RLS because at that time I was having some really good days/nights. Now however, it seems to be getting worse. I'll have 1 good night, then 5 bad ones. Same with the daytime, some days I can get a nap, most I don't. I wish the worse part was over but it doesn't seem like it.
Who is your Mayo Clinic neurologist?
I have Dr. St Louis and I really like him. Back in 2015 I had Dr. Silber, he's the one who put me on Neupro to get off Mirapex (I've learned since then that you never go back on a dopamine agonist if you've successfully gotten off one but that's what he did.
That was because in 2015 they believed in dopamine agonists and that one was less likely to augment on Neupro. He would treat you differently today.
Dr Silber is Director of the Quality Care Center which is one of only 13 in the country and he is also one of the authors of the Mayo Updated Algorithm on RLS - the bible on treating RLS. Dr St Louis is a member of the Quality Control Center so you are in excellent hands.
I've been off ropinirole for a little over a year. I took methadone while tapering which was a useless analgesic for me and caused insomnia. Then I was tapered off the methadone and gradually went on oxycodone. I'm limited to 4- 5mg tabs per day. It isn't adequate for RLS and chronic pain. I genuinely feel that my body is still withdrawing from ropinirole. I've tried to research long-term effects of being on/off of it. I had a similar experience as you with gabapentin and pregabalin. I'm trying to get by with the allotted oxycodone, Tylenol, a muscle relaxant and occ. Naprosyn. I'm trying to convince the "pain people" to try switching me to buprenorphine, I have an appt with the clinical pharmacist on 4-30-25! Really? I'm trying to find alternatives to them as they treat me like a junkie. I think they totally lack knowledge of RLS combined with other chronic pain. I get iron infusions when ferritin levels call for it. I think we have some things in common. Good luck.
Thank you for your reply. I know what you mean about being treated like a junkie. I have one clinic here that refuses to treat me because I'm on methadone and they won't touch it. They also have absolutely no knowledge of RLS. I'm lucky that the primary I see here is, maybe, a bit of an old hippie? He has no problem with methadone, very laid back about it and works well with my Mayo neurologist. Trouble is, he's getting up there in years... almost my age! : ) and I'm sure he'll be retiring soon. I hope he can find a good replacement for me by then. I hope your situation improves soon! Doctors were sure good at getting us into these predicaments but not so good at getting us out!
Hi CowgirlArtist, I had the same side effects from pregabalin and eventually switched to Gabapentin. I feel much better on Gabapentin and I lost the extra weight gain as well. Maybe try the switch? Best wishes for a solution.
Thank you Purpleyam. I might have to try Gabapentin again (it's been years). I'm not sure if the pregabalin is doing anything, Sometimes I have bad RLS, sometime not. I don't really know if pregabalin is the reason. I have put on some weight but winter does that to me, too. With methadone, I have NO appetite and pregabalin helped with that (not necessarily in a good way). Thank you for your suggestion.
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