OPINIONS

[Zorko]

I have severe RLS, have had the condition for 40 years, taken various medications over the years and they have all ended up with augmentation. Currently taking Ropinirole and need to switch to a new medication, thinking about Gabadentin, interested to hear others experience with this.

[SueJohnson]

To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. 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. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." 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 you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[Zorko in reply to SueJohnson]

Thank you so much for your reply so helpful. And yes I agree most Doctors do not unerstand restless legs most of my knowledge has come from research. I appreciate your advice and help so much.

[Hidden]

HI, Zorko. I took gabapentin (Neurontin as it then was called) for primary RLS around 25 years ago. It worked but had some side effects. I could deal with the dry mouth, but the memory loss was too much. At times, I couldn't even remember names of friends. A friend's wife also was on Neurontin but for neuropathic pain due to a broken bone or something or other. Same side effects. I stopped taking and moved on. Interestingly enough, I now am re-taking pregabalin which I understand is somewhat related. Though I have a dry mouth even at a small trial dose, I thus far have not experienced any cognitive issues. Memory is sound.

Hope it works for you. Be well.

[Zorko in reply to Hidden]

Thank you very much for your advice, it is nice to hear ftom someone that understands RLS, thanks again it will help me make a decision

[Simkin]

I have also had severe RLS for 40 years and am now on gabapentin as a last resort.Your doctor will start you off on a very low dose but in my case I am already on 1, 200 mgs a day and it is still not working.

I am reluctant to go any higher. But a low dose may work for you.

I get no side effects luckily.

[Simkin in reply to Simkin]

Sorry I mean I am already on a dose of 2,100 not 1,200 and gabapentin is still not working despite my ferritin being over 100.

[Zorko in reply to Simkin]

Thank you for your advice, I appreciate it.

[K2D2]

Yes to Gabapentin. Works beautifully for me. 900 mg nightly in three doses (300mg each) two hours apart starting at 4 pm.

[Simkin in reply to K2D2]

That's interesting as gabapentin not working for me but my GP wants me to spread it out like most drugs.600mg at breakfast

600mg at lunch

900mg before sleep.

????

[SueJohnson in reply to Simkin]

I think I may have mentioned this to you before but there is no need to take it during the day unless you have symptoms during the day. And taking more than 600 mg at one time as you are doing at night is a a waste since it is not well absorbed above 600 mg. I would suggest trying 600 mg 1 to 2 hours before bed, 600 mg 4 hours before bed, 600 mg 6 hours before bed and then 300 mg say at breakfast. That way you will not reduce your total dose, but will find out if you need it during the day and if it controls your symptoms at night. If you find out this is the case then reduce the 300 mg very slowly or you will have withdrawal symptoms. If you do so you won't have any. And then at the dose at the 6 hours before bedtime dose try reducing it by 100 mg and if your symptoms are still controlled, try again another 100 mg a few weeks later and etc until they are not controlled in which case go back up 100 mg.

[Simkin in reply to SueJohnson]

Yes you did mention it before.I am just a bit worried about going off grid and annoying my doctor by taking someone else's advice when he has specifically prescribed gabapentin 3 times a day well spaced out.

But maybe I should just try your suggestions without mentioning to him what I am doing.

I have such a wonderful GP that I don't want to irritate him by not doing what he suggests.

But Sue I am well aware that you have probably done a lot more research than he has and there is a lot to be said for going by personal experience.

[Joolsg in reply to Simkin]

Your GP is wrong. Gabapentin for RLS is only needed in the evening and night, as Sue advises. Your GP is using pain guidelines.

Please don't worry about offending your GP. I'm sure he will admit that he knows very little about RLS or the drugs used to treat it. Take the opportunity to show him the latest, best advice for RLS as set out in the Mayo algorithm where it clearly states gabapentin should be taken in the evening in split doses 2 hours apart.

Or simply change the timing and see if it controls your RLS. RLS follows the dopamine cycle so that is why you need the meds in the evening so they cover evening and night symptoms.

[Simkin in reply to Joolsg]

Thanks so much Joolsg for that reassurance.I think you are right about my GP using the pain guidelines and yes thus far in life I find I am educating my doctors about RLS.

I felt a bit nervous on this occasion about taking such a strong drug all in an afternoon and evening.

[SueJohnson in reply to Simkin]

Don't be nervous. I take 1800 mg of gabapentin that way. And if needed print out the section of the Mayo Clinic Updated Algorithm on RLS and show him at Https://mayoclinicproceedings.org/a...

[Simkin in reply to SueJohnson]

Thank you Sue.

[Simkin in reply to Simkin]

Sue I am now desperate to start the evening system as my legs are dreadful.I am just worried that taking 2,100 mg of an evening (rather than spaced out) will make me sick, as it is such a strong dose to take almost all at once rather than spaced out during the whole day.

But I can't go on as I am.

[Simkin in reply to SueJohnson]

Sue I am now desperate to start your evening gabapentin regime as my legs are dreadful.I am just worried that taking such a strong dose of 2,100mg condensed in an evening rather than spaced out during the day will make me sick?

But I can't go on as I am.

[SueJohnson in reply to Simkin]

Yo won't be taking 2100, just 1800 at night. And if you are really nervous, work up to it, making sure you still take a total of 2100 . For example you could take just 1500 mg at night by taking only 300 mg 6 hours before bed, or 1200 by not taking the 6 hours before bed dose. The lessor amount should always be taken at the earliest one

[Simkin in reply to SueJohnson]

Helpful as ever. Thank you.

[Amrob in reply to Simkin]

It's good to have a caring GP, but equally important is having a knowledgeable one.

[Simkin in reply to Amrob]

You are right.

[K2D2]

I must apologize as I communicated my dosages incorrectly. I take 600 mg 3 times a day: at 4 pm, 6 pm, and 8 pm for a total of 1800 mg. My physician did not educate me about correct timing for taking the Gabapentin—that is something I learned here. I believe it has to do with optimizing absorption of the medication for best results. I’m no expert—far from it! This is just what works for me. I hope you find relief.

[Simkin]

Thanks so much. Good to hear you also take your gabapentin in the afternoon and evenings.