Success I hope on ropinirole.hh - Restless Legs Syn...

Restless Legs Syndrome

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Success I hope on ropinirole.hh

BTABKWJ4561 profile image
10 Replies

I’ve reasantly spoken on the phone to a neurologist who I told about my problems with RLS which I’ve had for about the last four years. I have been taking ropinirole 4 mg which I was told was the maximum dose for this, which didn’t work all day. They worked when it mattered to me which was evening and night, but not during the day. Anyway the specialist put me on to 6mg of ropinirole slow release 1 tablet which I take at 4pm. Fingers crossed I’ve been fine. No problems for four days. Hope it carries on. So a specialist can help.

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BTABKWJ4561
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10 Replies

ooops!

I really hope this works for you, but I can't help feeling that you've been misled.

4 mg ropinirole is a high dose and generally speaking if you're already taking a high dose of a dopamine agonist, which is what ropinirole is, and it stops working, although it seems intuitive, it is not a good idea to increase the dose.

I appreciate rhat the increased dose is slow release so.it may not reach the same level in your blood, but it is still an increased dose over 24 hours.

If you're also having symptoms during the day, then it seems intuitive to either split the dose (morning evening) or take a slow release version.

Unfortunately, again this isn't necessarily a good idea.

It's true some specialists can help, I hope yours is one of them.

You may possibly find this works, but I suspect it won't work indefinitely and imagine that at some time it may actually make things worse.

Sorry to tell you this, I may be wrong, but has the specialist ever discussed "augmentation" with you?

You may find this link helpful

sleepreviewmag.com/uncatego...

Joolsg profile image
Joolsg

I have to be wary sadly. As Ropinirole had started to cause daytime symptoms that strongly suggests Augmentation. If a dopamine agonist stops working, the drug should be reduced or changed. If augmentation has set in, the drug should be reduced and an alternative med taken.Increasing the dose of Ropinirole ‘pours gasoline on the fire’ and feeds the augmentation.

I strongly suspect your symptoms will be alright for a short time and then will start to worsen. Getting off 6mg will be even harder than getting off 4mg.

Your specialist has gone against all the top expert advice and the maximum dose set out in textbooks and the medication leaflets.

I know it’s not what you want to hear but please be wary and read everything you can about augmentation. Forewarned is forearmed.

Ranjits profile image
Ranjits

Thanks I will try that definitely

Joolsg profile image
Joolsg in reply to Ranjits

Please do not increase Ropinirole above the maximum dose for RLS. Read about augmentation and dopamine agonist withdrawal.

dklohrey profile image
dklohrey

I have taken ropinirole for years. Initially 2 mg and them upped to 3 mg about 3 years ago. The effectiveness of the drug is lessening and I suspect augmentation. I am reluctant to try anything else as I have used ropinirole effectively for about 25 years, but I am going to have to try. One neurologist I went to suggested I use ropinirole supplemented with gabapentin. I tried it for a few days but found myself about to dose off while driving. Fortunately, I was in a store parking lot. Enough of that. Minerva suggested rotigotine in one of her replies. I think I will mention it to my physician on my next visit.

Joolsg profile image
Joolsg in reply to dklohrey

Gabapentin causes sleepiness so should only be taken at night for RLS. Rotigitone is useful if you are not suffering augmentation.

KickininAz profile image
KickininAz

I hope this works for you. I have been on regular ropinerole since 2005, for 15 years now. I am having some augmentation, and I would like to see a neurologist and change meds. That being said, I have to wait and wait and wait in order to see the doctor of my choice in person. I can request to "see" him by video call, but I would much prefer to meet a new doctor in person. Due to Covid, I could not even see my oncologist for an in person breast exam, as I am three years out of breast cancer surgery and radiation therapy. She saw me over the phone and she was wearing a mask even on the phone. Don't know why. Anyway, getting back to ropinerole, I am taking 3 mg per day. I take 2 mg around 6 pm, then during the night it wears off and I take another 1 mg around midnight, which allows me to fall back to sleep until around 5 am. If I am active I don't have symptoms until bedtime . If I try to read a book or watch TV in the afternoon, then the awful sensations begin and I have to move my legs constantly. I HATE RLS. Dad had RLS too. I hope you find relief with your new dosage and using the slow release. Good luck.

yohlense profile image
yohlense

I have been on Ropinirole for a very long time. At one point I got up to 3 mg a day and got into augmentation. I started searching for alternatives and found some supplements that helped me wean down on the Ropinirole. Currently I'm taking 1 mg at 4pm and half a pill at bedtime and this gets me through 80 to 90% of the time. I also take a supplement, Seratame with my afternoon dose. I would also encourage considering a bodyworker that does Cranial Sacral, this help tremedously and reduced the onsets. Now I do crossfit and have limited onsets. I can pretty much know what I'm doing that will bring on a bout. Good luck

Doings profile image
Doings

I’m desperate for a U.K. Neurologist. Can I ask whom you see please. I’ve tried contacting several in london but no one replies to emails or returns calls.

BTABKWJ4561 profile image
BTABKWJ4561

It was done through my doctor 6 to 9 months ago. I can’t remember the neurologist I spoke to on the telephone. It was a female neurologist that was based at Bath hospital. I mainly get good days and nights but occasionally it comes back in the afternoon and evening. But evening it settles down and I get a good night.

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