Switching from Ropinrole to eg Gabapentin

[Boldgirl45]

Hi everyone, I’m wondering if someone can advise about going from dopamine agonists - specifically Ropinrole - to the gabapentin type of medication ? My mum is suffering terrible drowsiness (as well as many other symptoms) and I think it’s time to try to do this.

it’s not the first time I’ve asked about my mum, but she seems so frail that I have been scared to do anything about it.

My question is: does anyone have experience of super slowly tapering down on this drug, whilst taking the other one and waiting for it to work ? Is it possible to be on both (ie could she still be taking a small amount of the Ropinrole so she wouldn’t have to taper down to nothing (as coming off the last bit sounds like hell on earth and I can’t see my mum being able to do that)?

Thanks all!

[Madlegs1]

It is ok to take the two at same time, but the Gabapentin wil not help cope with the withdrawal symptoms.

Taper down as slowly as possible and by as small amounts as she can tolerate. Check if the Rop can be cut into smaller pieces.

Sue Johnson talks about using a jewellery scale.

Gabapentin takes about 3 weeks to start being useful, so she could save it till the finishing of the taper down.

She may well need opioids such as codeine or tramadol to help her in those last stages .

Meanwhile, read any of Sue Johnson's replies to many similar queries on this site setting out strategies for managing RLS in general. Iron, triggers and food diary.

Good luck.

[Boldgirl45 in reply to Madlegs1]

Thanks so much 😊

[SueJohnson]

To come off ropinirole, the normal advice is to reduce by .25 mg every 2 weeks or so. She will have increased symptoms. She may need to reduce more slowly or with a smaller amount. She can get a pill cutter to cut them in half. Or she can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. I have also heard of some people having a compounding pharmacist taking the tablet and rendering it into a liquid so she can take small amounts. Then she should reduce by that amount every 2 weeks. She should wait until the increased symptoms from each reduction has settled before going to the next one. She will suffer but doing it in the smaller amounts should make it a lot less. Using a low dose opioid temporarily to help out with the symptoms especially as she nears the end will help. Some have used kratom or cannabis temporarily to help.

I would advise pregabalin rather than gabapentin since she won't have to split the doses but can take it all at one time. The beginning dose is usually 75 mg pregabalin. She should start it 3 weeks before she is off ropinirole although it won't be fully effective until she is off it for several weeks which is why I would advise her to come fully off it although some people do stay on a low dose although that may just lead to augmentation or eventually damaging her dopamine receptors so pregabalin won't work at all. After that she should increase it by 25 mg every couple of days until she finds the dose that works for Her. She should take it 1-2 hours before bedtime. Most of the side effects of pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If she takes calcium she shouldn't take it within 2 hours . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin." Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer her doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as hers obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[Boldgirl45 in reply to SueJohnson]

I really appreciate this Sue!

[DCM556]

Yes, you can be on both. Whatever the dose, talk to your Dr. first. Just DO NOT stop taking it. I ran out during the time of tapering off. The symptoms worsened, kicking violently, had to stand up while being exhausted needing sleep. This lasted around a week. Now the light headedness, sick feelings are gone. I recently found out that sleeping on my stomach, which I never did before, I fall asleep, with very little RLS, quickly. I am now only on Gabapentin and Tramadol. Just before bed I take one "last dose of the day" and a Tramadol. Sleeping like a baby, feeling better. Getting off Ropinirole was the best thing I have done. Good luck. Check a different sleeping position if possible. It may or may not help.

[Boldgirl45 in reply to DCM556]

Thanks very much !

[Boldgirl45]

just to be clear then, the gabapentin type drugs don’t actually work until you are fully off ropinrole ?

[SueJohnson in reply to Boldgirl45]

They may help but some but not completely until you are off ropinirole and your symptoms have settled.

[Boldgirl45 in reply to SueJohnson]

Thanks Sue!