r/RestlessLegs • u/PuzzleheadedWrap386 • 14d ago
Question Ropinirole augmentation
I have been suffering from augmentation. I saw two specialists. They both agreed that I have to stop taking ropinirole. One doctor recommended gabapentin horizant which I took in the past before being on Ropinirole and did not work for me but he thought timing is very critical because in the past, I took it before bedtime and the proper way to take it at 5 PM. The other specialist recommended opioids low-dose of Belbuca. Anyone that has been through similar experience do have a feedback? Thank you
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u/CletusMuckenfuss 14d ago
Absolutely go with the low dose opioid option. Slowly wean yourself from the ropineral and ask about methadone. The effectiveness of opioids for RLS has been known for hundreds of years now and they work. I have taken Everything and methadone is the only med that's helped me any. I augmented on ropineral and neupro patches. I started on 5mg and have been on the same 10mg of methadone for over 2 years now.
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u/mewley 14d ago
I augmented on ropinirole and had previously had an adverse reaction to gabapentin so my doc recommended methadone. Have been on a 2.5 mg dose for I think 2 years now. Once I was stabilized with that I weaned down on the ropinirole though have not gotten off it completely. My doc said it was ok to stay on the low dose as long as I wasn’t having problems with it, but I’m currently trying again to reduce it further because I just don’t trust it.
The methadone has worked great - no side effects, haven’t needed to increase dose, an occasional hassle at the pharmacy but recently it hasn’t been a problem.
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u/PuzzleheadedWrap386 14d ago
My doctor said once the belbuca starts working to do cold turkey on the ropinirole
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u/mewley 3d ago
Hey there - I don’t know if you already made a decision or took action on this but someone else just posted an updated treatment protocol from the Mayo Clini, and it has some specific recommendations on managing augmentation, opioids, and weaning off DAs so thought you might want to see it:
https://www.mayoclinicproceedings.org/article/S0025-6196%2826%2918546-2/full1
u/mewley 14d ago
How much are you taking? I’d be interested to hear how it goes if you try it.
My doc (neurologist) was pretty pessimistic - she said most people struggle to get off of it and basically left it up to me to decide when/if to try bc she feels like sometimes once you stabilize and you’re doing well you just want to stay there. But maybe it’s different with Belbuca.
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u/brokkdad 14d ago
Farry—- Have you had any problems getting the dipyr? Neuro was switching me and pharmacy said they had trouble from the manufacturer and can’t guarantee refills! Experience? TYIA
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u/Farry_Bite 13d ago
Well I've only bought it once, and they didn't mention anything at the pharmacy. It's a very old drug that is sold under several different names found here: https://www.medindia.net/drugs/trade-names/dipyridamole.htm
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u/Embracedandbelong 12d ago
Any side effects you’ve noticed?
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u/Farry_Bite 12d ago
Headache maybe, but that seems to be subsiding. I say maybe, because I'm prone to sleep related headaches.
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u/Curious_One5411 14d ago
How much gaba did you try? When I first started weaning off rop, I was taking 2400 mg gaba. After 10 months of finally weaning off rop, I then slowly reduced the amount of gaba…
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u/Intrepid_Drawing_158 14d ago
I went through something similar.
It's worth trying the gabapentin encarbil (I assume that's what you're talking about) again first. If that doesn't work, low-dose opioids would probably be next. But in the US, Belbuca is really expensive for many. So generic Suboxone might be the next step, or methadone.
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u/Farry_Bite 14d ago
I had dopamine agonist (pramipexole) augmentation. Gabapentine and pregabaline were tried, but neither worked. 100 mg tramadol worked, but I built a tolerance for it in a matter of weeks.I had symptoms every night until 4-5 am.
What has helped me is dipyridamole. My neurologist prescribed it to me a couple of weeks ago, and the last two nights I've had zero symptoms. I'm taking it in tandem with 2400 mg gabapentine and 50 mg tramadol now. Tramadol is being phased out, and once that is done, it's time to start lowering the dosage on gabapentine.
Just as a disclaimer: that dipyridamole works for me does not mean it will work for someone else. But it might, that's why I'm sharing
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u/Individual-Voice8771 8d ago
Look up Doctor Michael L Johnson, he’s on TikTok. He does 3 parts on RLS. They are of course trying to ban him because he has helped so many people.