Weaning off Ropinirole

[jblackburn67]

I have been on Ropinirole for about 2 1/2 years. Started out on 2MG and now on 4MG. Has pretty much managed my RLS, but keep reading about augmentation so decided to try to get off it.
I started taking 300MG of Gabapentin 3 weeks ago. 3 days ago I bumped it 600MG and went down to 2MG of Ropinirole. Have got through 3 nights but it’s been tough. RLS lasts from around 10pm to 1 or 2AM. Then I get a little sleep. Wondering if anyone else has switched from Ropinirole to Gabapentin. I’m planning on staying on the 2MG of Ropinirole for another week or 2 and then trying to get completely off it.

[ViewsAskew]

Hi jblackburn67. It is almost impossible to switch without the help of an opioid if you are augmented. It may cover symptoms later (it doesn't always do that for those who have augmented), but gabapentin cannot cover the symptoms as you cut back the ropinerole.

It usually take between 5 days and several weeks to get through those increased symptoms, and that is after you completely stop the ropinerole. Since you are on a larger dose, you do need to step down. I am not a doctor - pretty sure you can stop completely once you to to 1 mg. I honestly am not up on the current recommendations any longer.

[jblackburn67]

Thanks for the reply. I haven’t augmented. Have a friend who is very familiar with Ropinirole and he suggested I get off it now and try Gabapentin. My primary put me on Ropinirole and I had no clue. I just went with her suggestion and ended up on 4MG.
My symptoms are only at night. Although now that I just dropped down to 2MG I’ve noticed a little restlessness during the day. Wish I had done some research before I started taking Ropinirole.

[Yankiwi]

I'm glad you found this site. Your primary also had no clue letting you take 4mg of Ropinerole. If you haven't augmented you would have been very close and that is a terrible place to be.
Good luck.

[Polar Bear]

You should never have been started on 2mg ropinerole, it should have been started at the very lowest dose and gradually titrated upwards until achieving some relief. However, that's is the past. I think your drop from 4mg to 2mg was a bit much especially as the only support you had was gabapentin.
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[jblackburn67]

Thanks Betty, I like my primary doc but don't think she has any idea about RLS. There are a couple specialists that I found in Boston. I am going to contact them as I am getting around 1-2 hrs of sleep right now. Need a better guide on how to wean myself off of Ropinirole. I'm currently down to the 2mg of Ropinirole and 600 of Gabapentin. I think I may need an opioid to get off ropinirole as Ann suggested.

[Polar Bear]

For many years I was on ropinerole creeping up to 5mg spread over 24/7 to cope with my 24/7 symptoms. As I was fearful of the difficulties of coming off I spent 10 months very gradually reducing whilst also using Codeine. I was also prescribed Pregabalin for neuropathy and fortunately this also helps RLS. Pregabalin is a sister drug to Gabapentin.
I weaned off the ropinerole much more slowly than anyone else I am aware of and slower that I've seen recommended. I had tried twice previously without success and decided this was the way for me. Bear in mind I had full GP support and also the codeine and pregabalin.

[Rustsmith]

There are a couple specialists that I found in Boston.

One of the leading RLS experts in the country is Dr John WInkleman at Mass General. He has been treating RLS patients for decades (he was involved in the clinical trials on Mirapex and has stated he regrets his role in causing so many patients to become augmented). It may take a while to get an appointment, but he is VERY familiar with helping people like you.

Your next bet "local" option would be Brian Koo at Yale. Yes, that is a bit further away, but the trip would be well worth it if you cannot get in to see Dr Winkleman.

[jblackburn67]

Thanks Steve. I heard it could take months to see Dr. Winkleman. I actually talked to a Dr friend of mine in KC who is very familiar with RLS. He suggests I get the instant release ropinirole. That way I can wean off allot slower. The extended release only come in 2 and 4MG and you can’t cut them. If my primary knew anything about rls she would have suggested this from the start.

[badnights]

Good idea to switch to the immediate-release version. Your GP is not the only well-meaning doctor who is totally ignorant of augmentation. It is not a common sort of thing in the medical world.

How about you arrange appointments with both Dr. Koo and Dr. Winkleman, and if you get in to see Koo first and are pleased with his treatment of you, be sure to cancel the appt with Dr. W, but if you feel something is lacking, you don't have to start at Sqaure One.

[jblackburn67]

Thanks for the replies. Amazingly I’m starting to get some sleep after dropping from 4mg of Ropinirole to 2MG. After a rough 2-3 days, I’ve had 4 pretty good nights of sleep. I’m still on 600mg of Gabapentin, thinking of bumping that up to 900 now and dropping to 1mg of Ropinirole.

[badnights]

That's awesome!

[Polar Bear]

I am so glad you are making progress.
Sleep is bliss.

[SunFlower15]

I am currently in the process of tapering down from 1.5mg Ropinirole. I already had optimized my Ferritin level with oral and IV iron (and still am on it orally to assist with the taper - per my Sleep Med Dr). First I was started on Gabapentin, escalating the dose to control the RLS symptoms. Once that was achieved (knowing that zero is never possible), I began a super-slow process of reducing the Ropinirole by 0.125mg (cut 0.25mg pill in half) every 16-21 days.
I am nearly at half my original dose, with very few “flare-up” nights. This whole process will take me about 6-8 months. I recognize that I am lucky that Gabapentin works for me, and I know that this will probably become more challenging as I taper….BUT, I have real hope now that I didn’t have 6 months ago. I also know -from listening to my Dr and reading many posts here, that we all react differently to medications and treatment plans. Wish us both Good Luck!

[jblackburn67]

Quick update- I have switched over to 2mg of the IR Ropinirole with no issues. Think the 600mg of Gabapentin is helping with weaning off Rop. I’m going to try going down to 1 mg tonight and see what happens.