DAW and Gabapentin

[ParisianTN55]

Haven’t posted in awhile. I’ve tapered from 10 mg. Ropinorole down to 4 mg in 4 months. Had a telehealth appointment with a neurologist at Vanderbilt. He put me on 300 mg of gabapentin. I’ve been on it for 2 weeks. I know I should wait three weeks to expect it to kick in. After three weeks do I still need to taper a 1/4 mg every two weeks or can I go off the ropinorole? Not sure what to expect.

[ChrisColumbus]

You've done very well to get down from that crazy 10 mg of ropinirole, but 4 mg is still the maximum FDA approved dose for RLS. So you need to keep tapering.

As SueJohnson wrote in a Reply to you a couple of months ago "Gabapentin won't help until you are off ropinirole for several weeks". Joolsg wrote in the same chain: "I agree with SueJohnson. Also, 300mg gabapentin won't help. It's too low and doesn't work until after you're off Ropinirole."

You may need a low dose opioid to help: hopefully Sue/Jools will be along to advise

[SueJohnson]

Congratulations for getting down from 10 mg to 2 mg but you still need to keep tapering by 25 mg every 2 weeks. Don't go off it cold turkey. Gabapentin is not going to help you much while you are still on ropinirole and in fact won't help much until the withdrawal symptoms settle after you are off it.

[Joolsg]

Gabapentin won't make ANY difference sadly, and won't 'kick in' until you're completely off Ropinirole.Some experts add Gabapentin as you withdraw, and I'm really not sure why, as it doesn't stop the severe RLS or the withdrawal symptoms.

Gabapentin takes 3 to 4 weeks to start to cover RLS once you're off Ropinirole. It does allow your body to adjust to the side effects of Gabapentin.

The only meds that help to settle the severe RLS and the withdrawal symptoms are low dose opioids.

At each reduction, the nearer you get to zero Ropinirole, the worse the withdrawals.

You do NOT stop Ropinirole cold turkey. Ever. Continue tapering by 0.25mg every 2 weeks.

Look at Dr Winkelman talk about augmentation and how to get off these poisonous drugs. Video attached. Slowly, slowly, chipping away at the Ropinirole.

youtube.com/watch?v=h5Hyhmx...(Not working as expected?)

Codeine 30mg, tramadol 50mg or oxycodone 10mg taken for around 3 or 4 nights at each reduction can reduce the severity of withdrawal.

I only know of a handful of people on thos forum who have had a 'smooth' withdrawal.

Some have used Buprenorphine to make the switch, and they seem to avoid the brutal, hellish withdrawal.

But well done for getting this far. Keep going. The last 1mg is the toughest but, once off Ropinirole, your RLS will be far less severe.

[TheDoDahMan]

Smart money says to find a doc who will prescribe a low-dose opioid to pretty much completely ease the discomfort of weaning off the DAs. Finding that doctor may be easier said than done.

[AmazedAnt]

That's an insane amount of ropinirole for RLS! Congratulations on getting down to your current dose. Compared to 10mg Ropinirole, 300mg gabapentin is like a drop in a bucket... If the side effects from gabapentin are reasonable - everyone seems to respond differently - you would very likely need to titrate up your dose. Being a little older, the medical community likes to be careful with gabapentin, so maybe that's why you're on that low of a dose.

I'd recommend sharing the Mayo algorithm / recommendations for treatment with your provider. Also you could consider other treatments in case the required dosage of gabapentin is too much for you. I'm presently getting good results from Quviviq, and may try Belsomra. They can be pricey depending on your health insurance but there are assistance programs available to help.

My prior sleep specialist (Gaurav Patel, Penn Medecine) told his secretary to tell me to quit "ALL RLS meds" immediately about six months ago! I had gotten nauseous and vomited once from the ropinirole... He had prescribed the ropinirole, apparently forgot that I was also taking gabapentin for RLS at the time as well. I called back to double check and was told the same thing - fortunately I knew that quitting high dose gabapentin can cause seizures, so I called my primary care physician and he recommended I continue or at least very gradually reduce.

That said , after 2 nights of zero sleep and bouncing off the walls, I began using kratom before bed - which has worked well for me. If your provider is hesitant or ignores your difficulties and distress, you could tell them that you're going to take Kratom unless / until they can help you find a sufficient remedy.

Doing that, and finding a new sleep specialist is what I have done in order to be taken seriously... Part of me wished that Dr Patel would suddenly come down with severe RLS so that he would realize how horrible it can be and so that he could take better care of that group of patients!

[ParisianTN55 in reply to AmazedAnt]

Thanks for the info! I decided to wait on the gabapentin but I do have Tramadol that l use 1/2 tablet as needed.