Very Slow Taper off Ropinirole

[SunFlower15]

I’ve been on Ropinirole 1.5mg for almost 3 years. I have pretty mild augmentation. My Internist didn’t know about augmentation, and my dose was increased slowly to manage symptoms until I stopped asking for more (2 months ago) after joining the RLS Foundation. I credit this organization for fully educating me (a retired nurse anesthetist CRNA) with researched and credible information. I gave this doctor a copy of the 2021 Mayo Clinic Algorithm, and he thanked me-and said he would be changing his approach to RLS!
I now have seen a Sleep Medicine doctor who seems great, and we created a plan to get off Ropinirole. I’m on Gabapentin 300mg now, with excellent symptom control-and have just started to VERY slowly wean down the DA. The plan is to drop by 0.125mg (half a 0.25mg pill) every 2-3 weeks. It should take about 6 months. I’m just beginning, and have completed night #4. As expected, my symptoms have flared up-but seem manageable. I know that the quick taper method would not work with my mental health, so this slow process is what Dr Winkelman (RLS specialist) described in a 2021 Webinar.
I would like to hear some success stories or tips that anyone else might have who has done the very slow taper of your dopamine agonist. The forum is filled with difficulties, but I could use some encouragement or positive reinforcement-Thank you!

[Polar Bear]

I did a very slow taper off Ropinerole. I was on 5mg.... started in the days when 4 mg was considered to a satisfactory daily dose. Our RLS experts now believe that the max should be 1mg.
Like you I knew that a quick taper was not for me. It took me 10 months and was not difficult. However my taper off Ropinerole was supported by Codeine and Pregabalin at doses which ended up near the daily max. I had already been taking Codeine with the Ropinerole. As the Ropinerole decreased the Pregabalin in particular was increased. It just so happened that my Diabetic Neuropathy was being an issue.
I was fortunate that the Pregabalin was actually prescribed for Diabetic Neuropathy and as a bonus it would help my RLS symptoms.

Your sleep doctor sounds like a wonderful find.
I am impressed that he took heed of the Mayo Clinic Algorithm. So many doctors feel that they know best.
Many of us have educated our Primary Care Practitioners.
I wonder if you will need extra (possibly temporary) medication support as you reduce your Ropinerole.

Yes, the forum has many stories of difficulties. Sufferers are here because of difficulties. When someone has a success they often no longer need any support and no longer post. A sufferer may learn from us and have a success without ever posting.

I was in despair until I found this Discussion Board some 15+ years ago. My treatment is not perfect but it is as near perfect as I can make it.
I wish you well in your ropinerole taper. Your plan sounds very positive and possible.

[Yankiwi]

I augmented on ropinerole about 15 years ago. I was only up to .5mg (maybe even less) but had already augmented on sinemet so I knew what was happening thanks to this discussion board and was able to cut back.

Finally about two weeks ago—after getting down to .125mg for maybe a year I totally got rid of the ropinerole. It was more of a security blanket but I was still nervous about stopping.

I take 120mg codeine and 900mg gabapentin, both in split doses before bed and during the night. I read and walk for an hour to an hour and a half approximately twice during the night but I don't mind (too much!).

I've found that if I try to go to bed too early my legs invariably start to hurt then I have to get up so my challenge is to wait until I'm really tired before going to bed.

[SunFlower15]

I want to post a (very early!) update to my Ropinirole taper-down story. It’s a very slow journey, but I’ve dropped from 1.5mg Ropinirole to 1.25mg over 3 weeks, while still on just my “starter dose” of Gabapentin 300mg. While I have a long way to go, with challenges ahead, I am very pleased at how things are going. I have kept a very detailed spreadsheet of RLS symptoms, intensity and times of occurrence over the last several years, and this has been helpful when talking to my doctor. I have noted only 3 bad nights since my final maximum dose, 3 wks ago!
I do watch my Ferritin level closely, since my low point at 14 (normal for RLS people is > 100). I initially took oral Iron, then was able to receive 2 IV iron infusions in May and June (Iron Sucrose: one was offered, I had to lobby for the 2nd). I remain on oral iron, and perhaps that benefit - known to be very slow- has finally activated.
Anyway, I am very thankful for how this is starting out, and I appreciate reading everyone else’s stories.

[Polar Bear]

Well done. It's great to know that your taper is going well.
Slow and steady.

[SunFlower15]

I have another update to my long slow taper off Ropinirole: at the 4 month mark, I am down to 1/3 of my original dose (0.5mg out of 1.5mg). Am also taking Gabapentin 400mg. I drop down every 19 days or so, and things are going pretty well! Most nights are very manageable-especially compared to last summer. Last year at this time I felt nearly suicidal….but that has really changed.
Honestly-I am grateful every day for all the education I have received via the RLS Foundation: scientific papers, webinars, this discussion board, etc.

[Polar Bear]

You are doing so well. Slow and steady is working for you.
It is great to hear you have found us to be helpful..

[ViewsAskew]

I have another update to my long slow taper off Ropinirole: at the 4 month mark, I am down to 1/3 of my original dose (0.5mg out of 1.5mg). Am also taking Gabapentin 400mg. I drop down every 19 days or so, and things are going pretty well! Most nights are very manageable-especially compared to last summer. Last year at this time I felt nearly suicidal….but that has really changed.
Honestly-I am grateful every day for all the education I have received via the RLS Foundation: scientific papers, webinars, this discussion board, etc.

That is wonderful news!

[meyer]

I'm glad this taper is working for you.
I am tapering also but a bit quicker...I reduced by .0125 every 2 weeks.
I have also gotten off L-thyroxine (using Cytomel instead) and have increased my ferritin from 45 to 120 or so by taking 650 mg of iron on an empty stomach with orange juice.
I think both of these changes have
made it easier for me to get off the Ropinirole.
I am on Gabapentin 200 mg 4 times a day and I plan to try and decrease this after the Ropinirole is gone.
I, too, am so grateful for this site and all the info that is so available.

[Polar Bear]

Thank you for confirming we have been helpful.
Good luck in your continued taper. We love a success story.

[Macadwel]

Good luck to both of you!

[SunFlower15]

I want to post a final word on my long slow taper - down journey: Ropinirole 1.5 mg to NONE! 4 nights ago I took my final dopamine agonist dose, a trip that took me nearly 7 months to accomplish. I take 500mg Gabapentin, and oral iron as dictated by regular blood draws, coordinated by my sleep medicine doctor. I am very grateful that I was able to do this (my RLS still is a daily burden, but augmentation symptoms are gone).
I have always kept a sleep diary, and I see that my “good-enough” RLS nights outweigh the bad nights, so I feel that my situation is sustainable. I plan to list Ropinirole and Pramipexole as allergies in my medical record, so that if I ever cannot self-advocate, they will never be prescribed for my RLS again.
I have posted previously that I am ** deeply** indebted to the RLS Foundation for providing me with hard scientific RLS information, along with a caring community of fellow sufferers. I feel that I now have some control of my future with RLS-it does not control me. I truly hope that my posts will inspire someone else to make a successful transition off drugs that cause augmentation. I was looking for that success story a year ago-and now I can claim it.

[Rustsmith]

I plan to list Ropinirole and Pramipexole as allergies in my medical record

I too, have listed dopamine agonists as allergies in my records. If you specify pramipexole and ropinerole, don't forget to add rotigatine and carbidopa/levodopa too.