Ropinirole to gabapentin : Any good... - Restless Legs Syn...

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Ropinirole to gabapentin

danamias profile image
28 Replies

Any good news stories out there about moving from ropinirole to gabapentin?

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danamias
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28 Replies
Joolsg profile image
Joolsg

I presume you're augmenting on Ropinirole and need to switch?There are a few people on here who didn't suffer bad withdrawal but most have a really tough time.

Reduce 0.25mg every 2 to 3 weeks. You may need an opioid to deal with the withdrawals or medical cannabis.

Many people have successfully switched to gabapentin and the average dose is around 1500mg at night, taken in split doses because any dose above 600mg is not well absorbed. Dr Buchfuhrer recently advised splitting a 1500mg prescription by taking 300 6 hours before bedtime, 600mg 4 hours before bedtime and the final 600mg 2 hours before bedtime. See rlshelp.org/ letters, page 123.

Gabapentin didn't work for me after Ropinirole but there are several people doing really well on it.

danamias profile image
danamias in reply toJoolsg

Thanks. I wonder how I would make the transition. Currently on 4mg Ropinirol and 200mg of Gabapentin, all of which I take two hours before bed. Next steps??

Joolsg profile image
Joolsg in reply todanamias

Reduce by 0.25mg Ropinirole every 2 to 3 weeks. As you get near to 1mg the RLS will get much worse so ask for an opioid pain killer to take on bad nights.The gabapentin won't work fully until you're through Ropinirole withdrawal so start to increase gabapentin dose you're at 1mg Ropinirole. That way, you will be taking a full dose of gabapentin ( say 1200-1500mg) when you have finished Ropinirole.

Most people have bad withdrawal for 3 weeks after the last dose of Ropinirole and the gabapentin doesn't really help until much later. A few find that the gabapentin stops the withdrawal.

You won't know until you start the process .

danamias profile image
danamias in reply toJoolsg

Sounds bloody awful but here goes...

Joolsg profile image
Joolsg in reply todanamias

Fingers crossed you're one of the lucky few. It was hell on earth for me BUT, I'm glad I did it as once off the stuff you realise how much worse it was making your RLS.If you find the right meds afterwards, it will be fine.

Keep us updated.

danamias profile image
danamias in reply toJoolsg

Thanks and will do 👍

ookla profile image
ookla in reply toJoolsg

Jools - I hate to step on your (and Sue's) toes, but this is what Dr. B said: "... you may not absorb a significant amount of your second and third doses as they will likely compete for absorption with the earlier doses." It sounds to me like Dr. B is actually saying gabapentin doses should be spread out a bit more if you want to maximize the absorption. Maybe every 8 hours?

Joolsg profile image
Joolsg in reply toookla

Dr B says he agrees with the first plan which is the one I've set out above. So 300mg 6 hrs before bed, 600mg 4 hrs before and 600mg 2 hrs before bed.However, it is often trial and error with timing and some take their doses at different times. The point is anything above 600mg isn't well absorbed which is why Horizant ( US only) and pregabalin work better for most.

SueJohnson profile image
SueJohnson

To add to Joolsg's advice, the usual advice is the beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65 although since you are close to 65, I would start with 300 mg, I was 80 years old and started with 300 mg. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Most of the side effects of gabapentin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. On the ropinirole, you may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. I notice when you were taking gabapentin before you had side effects that you didn't like. If that happens again and they don't go away, you might want to switch to pregabalin. Although the side effects can be the same, some people find they are not. The conversion is divide the gabapentin dose by 6 to get the pregabalin dose. If that doesn't work, I suggest you try dipyridamole. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at

Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked?

I came off ropinirole and am on 1500 mg which completely controls my symptoms.

danamias profile image
danamias in reply toSueJohnson

That's really encouraging news. Thanks Sue 🙂

BlackPhantom profile image
BlackPhantom

Maybe...! I'm in the withdrawal process right now as the Ropinirole has augmented. Was put on 900 mg of Gabapentin 2 weeks ago while maintaining my 1mg dose of Ropinirole. No RLS but the side affects of dizziness, balance issues, lack of concentration, were very much present but tolerable. I am now down to .5 mg of Ropinirole with the same 900 mg dose of Gabapentin. RLS symptoms still at bay and the side effects have gone down a bit. In 3-4 weeks, will be eliminating the Ropinirole altogether (hopefully). Full Iron panel was done and came back normal. I am hopeful for the first time in 10+ years!

I found it very helpful. Just taper back on the ropinirole gradually. The gaba helps you do that. I found it very helpful but like everything, it depends on the person. Also incorporating time released ropinirole is very helpful as it is not know to cause augmentation. The two work together well.

Hang in there, it get bets better.

danamias profile image
danamias in reply to

Thanks Tiffany. Appreciate your wise words and support. I'll check-in every now and then with updates 🙂

Joolsg profile image
Joolsg in reply to

Tiffany extended release Ropinirole definitely causes augmentation. I was on it and the augmentation was horrendous. The Neupro patch has the lowest rate of augmentation but still causes it.

That's why the world experts no longer prescribe them. The Mayo algorithm is now the best research tool.

in reply toJoolsg

Thank you so much for the info. Interesting about the extended release. Crazy that we have to do our own research

Joolsg profile image
Joolsg in reply to

It is criminal that doctors and neurologists know so little.

LFIT profile image
LFIT

Hi, my withdrawal from ropinirole was ok - I peaked at 1.75 and hit zero about 7 weeks ago after 8 mths in it . I am 11 days into pregabalin @ 50mg with some positive effects however it takes weeks plus I think dose will have to go higher . The downside is tiredness / leaden feeling however this side effect may pass . If your withdrawal is not bad and your Rls tolerable I found it to be very useful to stay off drugs for a sustained period so I understood my baseline symptoms as it was a year later , what shocked me me was that I was still improving 6 weeks after getting off ropinirole ie mentally better and restless legs/ augmentation reducing ! Week 7 stabilised so then onto pregabalin . Clearly my RLS is not so severe as I could do this - so that’s luck on my part

danamias profile image
danamias in reply toLFIT

Thanks. I'm assuming pregabalin is similar to gabapentin. Is that right?

SueJohnson profile image
SueJohnson in reply todanamias

Pregabalin is basically the same as gabapentin except you don't need to take it in divided doses. To covert from gabapentin to pregabalin, divide the gabapentin dose by 6. The side effects are basically the same although some people find a side effect that bothers them on 1 does not bother them on the other.

Frustrated-RLS profile image
Frustrated-RLS

I was on a high dose of ropinirole like you are and augmented. I stepped down very slowly (thanks to the good information shared by people on this thread). I actually waited a few months after being completely off ropinirole before starting gabapentin—I had hoped to get back to some kind of baseline and honestly, was just scared to take another medication after the awful experience of the ropinirole. Thankfully, the gabapentin has helped me a lot, with little to no side effects. I am on 900mg (300 4 hours before bed, 600 2 hours before bed) and it has been a little over five months at this dose. I can still have RLS flare-ups (mostly related to alcohol—I was just on vacation and indulged more than I normally would, and paid the price as I knew I would…all part of the trade-off once you know your triggers). Good luck. This next part is going to be no fun but you will be better off for getting off the DAs.

danamias profile image
danamias in reply toFrustrated-RLS

Thanks a lot for this. A couple of questions if I may.

1) As I start to take gabapentin, I'm feeling very tired - sometimes to the point of overwhelming fatigue. Is this a normal side-effect? Is this effect temporary and will recede over time?

Now that you are completely off ropinirole and completely on gabapentin, how do you sleep? Are you groggy when you wake up?

Finally, I cant lie down at all during the day for a nap without the RLS symptoms starting. Now that you are on gabapentin can you do this?

Thanks and really appreciate your time 🙂

Frustrated-RLS profile image
Frustrated-RLS in reply todanamias

Gabapentin does not make me tired. Not sure if that is a side effect for others. It does make me sleepy at night an hour or two after I take the second part of my dose, which is quite helpful. I usually sleep all night or wake perhaps once, but can easily get back to sleep. I am not groggy when I wake up. I do not have daytime RLS anymore at all but I definitely did when I was augmenting on ropinirole, and as I stepped down and went through withdrawal it got worse. So that is what I suspect you could attribute it to—augmentation.

SueJohnson profile image
SueJohnson in reply todanamias

Being tired in the morning can be a side effect. It may dissappear after a few weeks or lessen and if not, it is usually is worth it for the relief of RLS symptoms.

SueJohnson profile image
SueJohnson in reply todanamias

I had that problem until I got to the amount of gabapentin that controls my symptoms at night. It now controls my symptoms when I take a nap.

Krocket711 profile image
Krocket711

I have been on Gabopentin for well over 14yrs..great drug, but it has its down falls too! RLS is an issue for me.. if i dont get my next dose on time, i have a flutter in my chest that tells me im way past my next dose time..This isnt to scare anyone from this, I think this drug has been a huge help to me, but its got its own issues! Maybe you will have some or NO Issues..Just an FYI is all

danamias profile image
danamias in reply toKrocket711

Thanks for this. What side effects do you experience from gabapentin?

Krocket711 profile image
Krocket711 in reply todanamias

The RLS Can be very miserable if you have ever experienced it before..trying to sleep with it sux to say the least..Withdrawls can be pretty intense..Shakes is another, and Memory is another .im only on 1800mg now and it still causes all of that i have mentioned..atleast that ive experienced.. But again, it has its pro’s n Con’s..If docs wont order pain meds (as in lately) this stuff does help.. just watch how your feeling..

danamias profile image
danamias in reply toKrocket711

Thank you for this 🙂

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