New to gabapentin: For years, I have... - Restless Legs Syn...

Restless Legs Syndrome

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New to gabapentin

Doglobwr23 profile image
12 Replies

For years, I have been taking 3 mg of Ropinirole for my restless legs. 1 mg in the morning and 2 mg two hours before bedtime. I have now added 900 mg of gabapentin which I have been taking for about two weeks. I take 600 mg two hours before bed and 300 right before bed. I find that my restless legs actually have gotten worse with it bothering me from about 5pm until I go to bed. I sleep better than I did with Ropinirole only but the evenings are worse. Has anyone else had this reaction to gabapentin?

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Doglobwr23 profile image
Doglobwr23
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12 Replies
Madlegs1 profile image
Madlegs1

Don't be blaming the Gabapentin.

Read up on Augmentation.

Plenty of posts on this site.

And on this page.

Doglobwr23 profile image
Doglobwr23 in reply toMadlegs1

Yes definitely augmentation. So frustrating. I also read that it takes a few weeks for gabapentin to be effective so I think I just need to be patient.

Madlegs1 profile image
Madlegs1 in reply toDoglobwr23

The Gabapentin will not be effective as long as you are suffering from Augmentation.

You need to get off the Rop completely before the Gabapentin can help.

Even then, if your dopamine receptors have been damaged too much, then none of the alpha 2 ligands will help-- apparently!😵‍💫🤕

You may need to be looking at low dose opioids.

Also , you could be looking out for a good lawyer to process a case against whoever prescribed the Rop without warning about augmentation, and then putting you on Gabapentin while still on the Rop.

There was a firm on here a while ago touting for business , so you could check that out.

Joolsg profile image
Joolsg

Madlegs is spot on. Your RLS is worsening because of Ropinirole augmentation.Gabapentin won't help until about a month after you're off Ropinirole completely.

SueJohnson profile image
SueJohnson

I agree with the others. Also you need to switch the gabapentin so you take the 600 mg 1 to 2 hours before bed and the 300 mg 2 hours before that.

Doglobwr23 profile image
Doglobwr23 in reply toSueJohnson

Thank you.

SueJohnson profile image
SueJohnson

Why haven't you started reducing your ropinirole? You were given advice on how to do this 5 months ago. The augmentation is not going to go away and will only get worse.

Doglobwr23 profile image
Doglobwr23 in reply toSueJohnson

I was going by my new doctors orders.

Doglobwr23 profile image
Doglobwr23 in reply toDoglobwr23

Can you tell me again how to reduce? Right now I take 1 mg in the morning and 2mg at night.

SueJohnson profile image
SueJohnson in reply toDoglobwr23

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole 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.

Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The gabapentin (won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.

Take it 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...

Gonzo123 profile image
Gonzo123

I haven't been on Ropinirole now for several years and in 2013 I was put on Rotigotine Patches which helped a lot. But now I am going through Augmentation. I paid to see Dr Robin Fackrell in Bath who now has written to my GP advising them to put me on Buprenorphine but they won't, so now I do not know what I am going to do. Can anyone help.

nishimi profile image
nishimi

i would guess you are reacting to the Ropinirole, i have had first hand experience with augmentation..... you must slowly reduce the devil drug ropinirole. So very sorry for your situation, been there. Read all the information on this site you will need it all to get through this.

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