Restless Legs Syndrome (RLS) Discussion Board

Hi all

just wondering what are the experiences like with tapering off ropinirole and the pace at which people have gone off ropinirole?

i am on 1.5 mg of ropinirole (increased from 0.25mg to within 1 year of diagnosis), and was at the most comfortable that I have ever been in the last 3 years. But took the plunge to propose to my neurologist to trial reduce dose because I am concerned about augmentation. No courage to go cold turkey because of really bad nights when I forgot my meds on 2 occasions

my neurologist has limited experience with RLS; he was happy for me to trial a reduction cautiously but didn't give me further recommendations on how to reduce; but there is limited medical care options for RLS in my country

I just started cutting down to 1.25mg but already am struggling to manage; barely slept and legs were uncomfortable, and i have a splitting headache from lack of sleep, while still pretending to be totally efficient and functional at work. I am very tempted to increase my clonzapam except that it has taken almost 3-4 months to cut down from 4 tabs to 1 tab.

some advice from people who have gone through tapering off ropinirole would really be helpful.

this forum has been a life saver for me - rls has been a very lonely illness and journey at least in my experience, before i found this forum

I hope some other people reply. I went from 1.5 mg ropinirole to pramipexole then back to ropinirole 1 mg while my doctor learned about augmentation; I came off that abruptly with the mediocre help of codeine.

My advice to you is either to come off it cold turkey or stay on it. If you think you're augmenting - symptoms coming earlier in the day, spreading to other body parts, increased intensity - then you should stop the ropinirole and start something else, something that's not a DA. If you're not augmenting, keep an eye on your ferritin (keep it above 100) and keep taking it. OR , if you fear eventual augmentation, stop it completely and get on something else.

There is no point, in most cases, in my opinion, to tapering. It just prolongs the suffering, makes it last weeks instead of days. And the suffering is bad no matter how you look at it - it is either intense or very intense. Without sleep, we become less able to withstand the suffering. Best to get it over with.

But you should have a strong opioid for the withdrawal period, for at least two weeks if you're stopping cold turkey, four to be safe. Will you doctor do that for you? Withdrawal from a DA for people with WED/RLS causes increased symptoms.

What are you going to use after the withdarwal? Have a plan in place with your doctor.

There are different opinions on all this, and your doctor's opinion should be the one you listen too - assuming he informs himself. Other things you might want to look into: Some people feel that they suffer less when they taper instead of going cold turkey; you might be one of those people. Some doctors feel that we must come off a DA without the assistance of an opioid after augmenting , in order for things inside us to re-set properly. And rarely there are issues with rapid withdrawal from a DA causing serious problems.

hi badnights

thanks for the information!

i do think i was augmenting which was why the dose went up from 1.25 to 1.5 to get some relief (this was before i found this forum and realise that we should try to keep to 1mg), hence me trying to reduce the dose

i have some tramadol and clonzapam that has been prescribed to me but i have managed to wean off the tramadol for a while now and take it only when i need to; i guess i have that as a backup plan; i have some leftover low dose lyrica as a standby from a previous trial of medication

but i m really in a blind leading the blind situation......

fuz_mind, you should give a lot of consideration to buying one or two copies of the book "Clinical Management of Restless Legs Syndrome" by Kee, Buchfuhrer, Allen and Henning, Second Edition. This book was written as a reference for doctors, but is understandable by those of us who do not hve medical educations. It costs about $25 n Amazon. The reason why I suggested 2 copies is one for you and one to give to your doctor. The authors are some of the leading experts on RLS and they cover almost all aspects of treating it, including the options for treating augmented patients,

Rustsmith: my copy just arrived from amazon today!

i saw the recommendation for the book in another thread and i'm reading it now with my post-it stickers beside me

fuz_mind wrote:Rustsmith: my copy just arrived from amazon today!

i saw the recommendation for the book in another thread and i'm reading it now with my post-it stickers beside me

It's a wonderful book. Mine is full of margin notes and post-its. I've had it for a few years and it accompanies me to the doctor as and when necessary.

FUZ_MIND, I know you don't want to go 'cold turkey' so I don't suggest it but I'll just tell u a little of my experience. I was where u are but after about 5 years on ropinirole prescribed by a GP who had no knowledge of RLS. I just blindly took it, unknowingly augmenting and not thinking about a Neurologist.

I found this site, read about DA drugs and augmenting and decided to go 'cold turkey'. As BETH mentioned above, it was tough and I suffered for weeks with terrible RLS and totally sleepless nights for 2-3 days in a row for awhile. Toward the end of the withdrawal I found a Neurologist who immediately told me he "could have helped me during the withdrawal". I did not ask, and he did not specifically state, but I believe he was referring to Lyrica as what he would have prescribed during that time. He immediately made clear his opposition to opioids. I'm now in a trial period of Horizant and Temazepam and sleeping for the first time in many years.

I'm going with the suggestions of my doc though "all the ballots have not yet been counted" with regard to how much he truly knows about RLS and whether or not he's one of the types of doc I read about in this forum......one who thinks he knows it all and arrogantly rejects anyone who might indicate otherwise. I also have the book by Buchfuhrer with the dog-eared pages and highlighted areas. I took the book with me to a recent meeting, using it to ask questions of my doc. As an afterthought when leaving the office I asked if he was familiar with the book and handed it to him. He indicated a familiarity with Buchfuhrer but had not seen the book. His only other comment was "I know a lot about restless leg" as he handed the book back. He MAY be "one of those" but I'm giving him the benefit of the doubt at this point.

Jim

If your neurologist was suggesting that Lyrica would have helped during your D/A withdrawal, he maybe does not have a particularly full experience of that aspect of managing RLS. It is possible that there are some sufferers for whom Lyrica provided help during D/A withdrawal but usually only medium to high potency opioids will help once augmentation has set in. My understanding is that this is fairly widely established (although my own nuerologist also prescribed Lyrica for my withdrawal but it did not have any impact on the symptoms).

He indicated a familiarity with Buchfuhrer but had not seen the book. His only other comment was "I know a lot about restless leg" as he handed the book back. He MAY be "one of those" but I'm giving him the benefit of the doubt at this point.

Probably best way to handle it. (I would have rathered a different response.. not just "I know a lot about it") What it often comes down to after knowledge is their attitudes toward prescribing opioids.

Fuz_mind I'm glad you got the book. I actually gave a copy to my doctor once, years ago, and he accepted and thanked me, and modified my medication according to what he read. Unfortunately he left town and returned to his specialty of gut diseases. Not sure if the knowledge ever helped him with other patients or not!

Hi all!

thanks for all the responses. i'm on 5th day of 1.25mg and honestly I can see my symptoms gradually worsening over the last 5 days; by yesterday i was having problems with sitting still in the afternoon and have gone back on my tramadol because the pain was unbearable; last night i was waking up every half hour. trying to stay positive but it's a struggle - my irls score is back up to the moderate range

i read the book cover to cover over the weekend and am contemplating buying my neurologist a copy! But i do have a list of questions to ask him next week.

On a side note, does anyone know if ropinirole is one of those medication whose dose is dependent /affected by one's body weight?

I do not think ropinerole doses are affected by weight. Have never heard that; I take pramipexole (a very similar drug) and a very tiny amount has always worked for regardless of weight and I have varied about 60 pounds over the last 12 years.

thanks viewsaskew!

an update following everyone's response

my neuro consult didn't go too well yesterday, even when I brought the book into the appointment. maybe i should buy a copy of the book as an early Christmas gift

my ferritin levels have dropped further and he was still cheerfully saying that the numbers are good, although he eventually backtracked after I sent him Dr Earley's paper and now says that we should repeat blood test in 2 months and kiv repeat iron infusion again

we had a long fruitless discussion about tapering off the ropinirole - he still wanted me to up it back to 1.5mg. i'm going to have to sit on this for a while.......

thanks for everyone's response though... greatly appreciated

So hard to make decisions when we are at our best, but when we are sleep deprived and we keep hearing that what our doc says is wrong, it is crazy making.