Ropinirole as needed?: Hello everyone... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinirole as needed?

zeusop profile image
16 Replies

Hello everyone. I have taken low dose Ropinirole on occasion (.25mg) and alternate it with Gabapentin (300 mg) for medium RLS symptoms and to help with sleep. I do this for fear of Augmentation on Ropinirole and loss of efficacy with Gabapentin over time. Has anyone here have had experience with this?It works for me but this has been short term so far.

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16 Replies
SueJohnson profile image
SueJohnson

Since you apparently are having no side effects from gabapentin and 300 mg is only a starting dose and since you are rightly afraid of augmenting on ropinirole which up to 70% of people will do, why not wean yourself off the ropinirole and increase the gabapentin?

SueJohnson profile image
SueJohnson

And there is no need to worry about loss of efficiency with gabapentin.

zeusop profile image
zeusop in reply toSueJohnson

Thanks so much Sue. Sort of what I was thinking. The only reason I even have been alternating is that it seems after a few days the Gabapentin seems less effective. And the Ropinirole which I take only twice a week fills in the gaps. Could be my imagination anyway. If Augmentation on Ropinirole happens even with .25 mg and twice a week then Gabapentin would seem to be the likely alternative. Thanks again.

SueJohnson profile image
SueJohnson in reply tozeusop

Since you take ropinirole only twice a week, it should be easy to come off it. Cut the tablets in half with a pill cuter and take those for a couple of weeks and then stop them entirely. Meanwhile add 100 mg of gabapentin and take them every day. after a couple of days increase the gabapentin by 100 mg until you find the dose that completely controls your symptoms. Take it 1-2 hours before bedtime. 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 of gabapentin 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. Since you haven't had any side effects yet, you may not have any. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." And you probably won't need anywhere that much. If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

zeusop profile image
zeusop in reply toSueJohnson

Thanks so very much Sue. Very valuable information

DogBella profile image
DogBella in reply toSueJohnson

If you stop the Ropinirole, how long does it take for the augmented pain to cease?

SueJohnson profile image
SueJohnson in reply toDogBella

In most cases just a few weeks, but everyone is different.

DogBella profile image
DogBella in reply toSueJohnson

Thanks, I am down to 2 mg a day of ropinirole from 8 mg. I have severe pain now and was wondering what going cold turkey would do. I only get about three hours of sleep a night. Still take 1200 mg of Gabapentin and 600 of Horizant. Also received my first iron infusion on Wednesday. I've been taking the ropinirole and gabapentin for years and the Horizant for about three months.

SueJohnson profile image
SueJohnson in reply toDogBella

DO NOT STOP it cold turkey. I know one can be impatient and want to get it over with all at once, but that will be like hell and could even be dangerous. It's great you have gotten down this far. You were on twice the maximum amount. Ask for a low dose opioid to help with the withdrawal symptoms and go more slowly coming off ropinirole. You might want to print out the appropriate section of the Mayo Clinic Updated Algorithm on RLS to have to show your doctor if s/he does not want to prescribe opioids. Are you taking the gabapentin in divided doses 600 mg 1 to 2 hours before bedtime and the other 600 mg 4 hours before bedtime since it isn't well absorbed above 600 mg? Also the gabapentin and Horizant won't fully work until you are off ropinirole and your withdrawal symptoms have subsided.

DogBella profile image
DogBella in reply toSueJohnson

Thank you

LotteM profile image
LotteM

If this works, why not continue? Yes, you can take ropinirole as needed, as it works 'right away' (an hour or so after taking it). Usually people on here say that for the gabapentin to work for rls symptoms, you need to take it 2-4 weeks consistently. You experience seems different, although you are not the first with a more instant relief. And at a low dose as well.

I hope it lasts. Symptoms tend to get worse over time but we are all different and there is not one specific way in how the rls develops or how it can be managed.

zeusop profile image
zeusop in reply toLotteM

Thank you Lotte. Appreciate your input

grassgree profile image
grassgree

It takes a couple weeks for gabapentin to become fully effective, so you may not be getting the full benefit. Although 300 mg is a low dose, it does lose effectiveness over time, so don't increase it any more than you have to.

zeusop profile image
zeusop in reply tograssgree

Thanks so much for the response and advice.

4fishylady profile image
4fishylady

I use them both at bedtime, and have done so for several years, with no augmentation. I also take ropinirole at suppertime. This is the regimen my Neuro put me on several years ago. Maybe, I should try just the gabapentin alone and see if I can get off the ropinirole? This has me thinking!

zeusop profile image
zeusop in reply to4fishylady

Thank you for responding. What dosage of Ropinirole and Gabapentin do you take?

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