Transferring from ropinirole to gaber... - Restless Legs Syn...

Restless Legs Syndrome

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Transferring from ropinirole to gaberpentin

Harley247 profile image
7 Replies

Hi All.i have had severe Rls for 18yrs now.started on 0.25 like you all..now after bad advice I'm now on 6mg long release.i have recently moved to Spain and decided enough is enough of these evil DAs,as suffering terrible Augmentation (obviously) I paid to see a Rls specialist a couple of days ago..he seemed to know his stuff.and has prescribed gaberpentin.hes started me on 100mg for a week then 200mg 2 week and so on until the 5th week when I reach 3x300mgs.i am still taking the 6mg xl requip along with the gaberpentin. I only started this last weds (3rd day) I know I have to tirad the requip down as I go up on the gabba,but,how do I go about this? I understand its 0.25 reduction every 2 weeks,but,that would take me 6 months,so,the way it's planned I will be on 5mg requip as well as 900 mg gaberpentin which seems a bit much altogether. Sadly I forgot to ask him how to tirad the requip.and would cost me a fair bit to see him again,just to clarify this.i do have plenty of 1mg and 2mg instant release.any advice gratefully received.thanks

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Harley247
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SueJohnson profile image
SueJohnson

You need to switch to the regular ropinirole because the slow releases ones can't be cut. Yes reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. I know this can take a long time but believe me you don't want to rush it.

There is no real point in starting the gabapentin now as it won't help much until you are off ropinirole. If you do continue it now do not go above 900 mg until you are off ropinirole for several weeks and your symptoms have settled. The way to take it is 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime.

Most of the side effects 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. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

By the way it would really help us to give you advice if you would indicate on your profile what your gender is.

Harley247 profile image
Harley247 in reply toSueJohnson

Morning thanks very much for your quick reply and information. Really appreciate it.i actually private messaged you 4 years ago,it's on our chat.is it ok to pm you again,could really do with some help on this thanks.

Harley247 profile image
Harley247 in reply toHarley247

Oh by the way I'm male 68 yrs old.

SueJohnson profile image
SueJohnson in reply toHarley247

sure

Joolsg profile image
Joolsg

rls-uk.org/useful-resources

Scroll down to Useful Resources and it explains how to get off.

And yes, it will take over 6 months on such a negligently high dose.

Gabapentin won't help until about 4 weeks after the last dose of Ropinirole so it's too early to start it now. Wait until you are down to 0.5mg of normal release Ropinirole.

There's also a print out on Iron therapy and on Impulse Control Disorder.

If you've experienced ICD, do consult a solicitor.

Harley247 profile image
Harley247 in reply toJoolsg

Hi thanks very much for the info.

SueJohnson profile image
SueJohnson

I forgot to add once you are off ropinirole for several weeks and your symptoms have settled, assuming you have been on gabapentin for at least 3 weeks, then increase it by 100 mg ever couple of days until you find the dose that works for you.

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