Ropinerole PLUS gabapentin: I saw the... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinerole PLUS gabapentin

KickininAz profile image
37 Replies

I saw the doctor and he prescribed gabapentin. I asked about weaning off the 2 mg of ropinerole that I have been on for the past 10 years. He surprised me when he said I may begin a low does of gabapentin BEFORE I am weaned off of ropinerole. Has anyone here taken both of those drugs at the same time? I don't want to overdose. The doctor said that the gabapentin would help induce sleep, and to start at just 100 mg an hour before bed, and gradually go up on the dose to 300 mg if needed. Then I am to see him again in one month and discuss how this plan is working. I am scared to take both meds at the same time, so I have not yet begun the gabapentin. Thanks for any knowledge, I find you guys are often more informed that the doctors are.

Cathy In Arizona

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KickininAz
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37 Replies
Madlegs1 profile image
Madlegs1

Great that you have a good doctor.Gabapentin takes a few weeks to get working in the body, and should be titrated upwards slowly--- so sounds like he's on the money.

No problem taking them together, but Gabapentin won't help with coping Avec the pains of withdrawal symptoms. You may need opiods in the last few weeks.

Go down very slowly (let your body direct the pace) and by as small amounts as possible. Buy a pill cutter or very sharp knife.

Also avoid taking magnesium of any kind at least 3hrs either side of the Gabapentin.

Good luck with your progress.

KickininAz profile image
KickininAz in reply to Madlegs1

Thank you. I feel better about taking both pills at once now. Tonight I will begin adding just 100 MG of gabapentin. He said ultimately I may need to go up to 900 but to start slowly and try to stay on the lowest dose that helps. My schedule to reduce ropinerole is to drop by 0.25 MG every 3 to 4 weeks or as tolerated.

Madlegs1 profile image
Madlegs1 in reply to KickininAz

Sounds good.You are so lucky to have such a rare doctor.

I'm not sure if anyone keeps a list of helpful medical bods for the USA, but it would be good to add his name to such a list.

Perhaps Kaarina can advise?

Kaarina profile image
KaarinaAdministrator in reply to Madlegs1

Sorry I cannot help. I only have a very short list of medics in the UK. Joolsg may be able to though.

Biscuitface profile image
Biscuitface in reply to KickininAz

What area are you in please? My GP has little knowledge of RLS. I also paid to see a Neurologist privately and found same there too

Kaarina profile image
KaarinaAdministrator in reply to Biscuitface

KickininAz is in the US. I see you are from the UK. I do have a very short list of medics members have recommended in the past. Most are in London but there are a few scattered about the UK.

Biscuitface profile image
Biscuitface in reply to Kaarina

Hi KaarinaMay I please have the list?

Kaarina profile image
KaarinaAdministrator in reply to Biscuitface

I would prefer that you say roughly in which area you reside and then I can see if there is anyone on the list that is near you. You are welcome to private message me should you wish.

LFIT profile image
LFIT in reply to Kaarina

Hi Kaarina. I saw your note ref UK experts . I’m in Berkshire Uk and would be interested in seeing a shortlist as may look for a 2nd opinion on my situation in due course . Thanks

Kaarina profile image
KaarinaAdministrator in reply to LFIT

These names have been recommended by members on this forum over time.

Prof. Ray Chaudhuri at King's College in Denmark Hill and Dr. Guy Leschziner at Guy's Hospital.

Royal Free & National Hosp for Neurology

& Neurosurgery & UCL Inst. Of Neurology Neurologist & Prof of Clinical Neuroscience

NHS/Private Professor Huw Morris, Consultant

Guy's & St Thomas' London Professor Adrian Williams, Clinical Director & Consultant Sleep & Respiratory Physician NHS

National Hosp for Neurology & Neuropathy, London, Queen's Square Dr Paul Jarman, Neurologist,Movement disorders and Prof Matthew Walker, Neurological Sleep Disorders NHS/Private

London Bridge Hospital , Mr. Muza Rexford, Specialises in sleep disorders and RLS

Private/NHS

Sleep Disorder Centre, Nuffield House, NHS, Dr Patrick Murphy, Neurologist

Guys Hospital, Gt Maze Pond, SE1 9RT Tel: 0207 1883430

Kings College Hospital NHS/Private Dr Prashanth Reddy, Consultant Physician

Guys Sleep Disorders Clinic, Dr Eliza and Dr Wasserman Berkovitzar were recommended recently by a member of this forum.

I hope that helps.

Legflicker profile image
Legflicker in reply to Madlegs1

HI Madlegs, I hadn't heard about the magnesium avoidance before. Do you know why this is the case?

Madlegs1 profile image
Madlegs1 in reply to Legflicker

Apparently it absorbs the medication, so reducing the effectiveness.If you Google "mg and meds" you'll find interactions with about 200 other meds.

in reply to Madlegs1

Thanks much. Have never heard thst

joepublic profile image
joepublic

I took 300 x 3 doses a day in parallel to 2 Mg of Ropinirole for years with no problems. It was supposed to reduce the symptoms of augmentation - initially it did but tailed off. I am now weaned off Ropinirole & about to start reducing gabapentin.

KickininAz profile image
KickininAz in reply to joepublic

If you ultimately reduce or eliminate the gabapentin, as you have already removed the ropinerole from your treatment, what medication will you use then? In case the gabapentin does not work for me, I would like to know what to ask about next.

joepublic profile image
joepublic in reply to KickininAz

I take Targinact (Opiate) instead.

KickininAz profile image
KickininAz in reply to joepublic

Are you in the US? I am in Arizona. I am reluctant to even bring up opioid treatment. There has been so much bad press about doctors prescribing opioids.

joepublic profile image
joepublic in reply to KickininAz

No in UK

martino profile image
martino

I have a sort of triple therapy and there has not been any interaction problem. I take Pregabelin but had been on 2700 mg of Gabapentin whilst also having 200mg of Tramadol and wearing a 2 mg Neupro patch. I have severe or very severe RLS and this is controlled well by the medication. I don’t know what I will do if the RLS breaks through but meanwhile I relish my sound sleep!

KickininAz profile image
KickininAz in reply to martino

Good to know there are still drug combinations I can try in future. This RLS is truly hell, isn't it?

martino profile image
martino in reply to KickininAz

It is awful. I live by the day but if it comes back…….

Legflicker profile image
Legflicker

Hi, I took both for a while at first and found it easy to cut down on the Ropinerole once I was on the Gabapentin. I had no ill effects. I still take 0.25 of Ropinerole some evenings with the gabapentin as I find it helps a little. I'm aware I might be imagining that this small amount helps !

KickininAz profile image
KickininAz in reply to Legflicker

Ultimately what dose of gabapentin did you find helpful? I tried my first dose of only 100 mg of gaba last night in addition to the 2 mg of ropinerole. I will have to increase the dosage as my doctor expected I would to get any benefit. On only 100 mg of gaba I got a tiny bit drowsy early on, but nothing significant.

Legflicker profile image
Legflicker in reply to KickininAz

After about two/three weeks I was on 1200 Gaba and I don't remember exactly how long it took to get down to 0.25 of ropinerole but it wasn't much more than a few weeks. Previously, I'd been unable to reduce the ropinerole even though I had terrible augmentation and even slowly coming off it had made me feel ill and anxious. The gaba does make you a bit groggy at first but I seem to be ok now- a few months on. At least I sleep ok most nights and can focus at work.

Seaux profile image
Seaux

Yes! My doc has me both on the same time and it works well.

vonnie1947 profile image
vonnie1947

I have taken both for many years with no problems. I take 600mg Gabapentin and 1mg Ropinirole (occasionally two). Don't worry, you'll be fine.

Pepper163 profile image
Pepper163

HiI was prescribed the exact dosage as you have received....It has worked well..after 3 months on both meds I am working on weaning from Ropinerole slowly...it is a slow process per my MD

Joolsg profile image
Joolsg

Sounds like you found a good, knowledgeable doctor. It's safe to take both together and he's advised a safe withdrawal schedule for the Ropinirole. As Madlegs says, you may need an opioid to help you through the 4 weeks after you drop that last dose of Ropinirole.Most people have a very difficult withdrawal ( although a lucky few don't) but stick with it as your RLS will be so much better once off Ropinirole. Less severe, less intense and hopefully the gabapentin will control it.

Good luck and do share the name if your Doctor. We have other people visiting this site from Arizona and they're desperate for good doctors who know about RLS. Some have travelled to California to visit Dr. Buchfuhrer ( or had a tele consultation with him).

KickininAz profile image
KickininAz in reply to Joolsg

If this ultimately works, I will share his name. I am new to his practice and am with holding an opinion until I have been his patient for a while. He has a sort of brusque attitude, but that is OK, as long as he is up to date on treating RLS. He also questioned my iron levels several times, I pointed him to a recent normal iron and ferritin study done by my regular general doctor. He is going to review those lab results before I see him again next month.

Joolsg profile image
Joolsg in reply to KickininAz

Even better. Most doctors will say your iron results are normal but for RLS, the figures need to be much higher. Over 100 for serum ferritin and 60 for serum iron. He really does seem to know what he's doing if he's asked to review them. Totally understand about sharing his name.

Sillylily profile image
Sillylily in reply to KickininAz

If you decide to share this doctors name, would you please share it with RLS.org? They have a list of doctors in the US who treat RLS. Thanks.

I take both gaba and ropinirole. Gaba really helps when you are trying to cut back the ropinqirolqe. It really helps. It's ok to take both.

Elffindoe profile image
Elffindoe

Great doctor!

That is, they appear to be fairly well informed about RLS.

As others say, there's no problem with taking both a DA (ropinirole) and gabapentin at the same time.

Some do this permanently and it's called "combination" therapy. It's only drawback is the risk of augmentation,

Your doctor isn't quite up to speed on gabapentin doses.

The STARTING dose is 300mg (if under 65,100mg if over)

It needs to be increased until it becomes effective. A typical minimum effective dose is 900mg.

The maximum dose is 2700mg! However, it's difficult to say whilst experiencing augmentation or DA withdrawal so not really a good idea to go above 900mg until some weeks after total withdrawal.

As others say, gabapentin may or may not help with withdrawals,but it's still best to start taking it before stopping the DA, it takes some weeks to work.

KickininAz profile image
KickininAz in reply to Elffindoe

Perhaps that is why he gave me enough gabapentin in my prescription to go up to 300 mg each day until I see him next month. I had expressed to him my reluctance to begin on a large dose so he ordered 100 mg capsules. The next level up is a 300 mg capsule. Since I expressed that I would like to start low, he ordered 100 mg which I can take 3 of each night if needed. He did say he expected me to ultimately need 900 mg minimum. I like to go slow and he respected my wishes.

Elffindoe profile image
Elffindoe

I forgot to add. Please read up on the treatment of augmentation which inckoudes

1) Iron therapy

2) Eliminating aggravating factors.

e.g.

mayoclinicproceedings.org/a...

see "General considerations".

Samcat123 profile image
Samcat123

Yes you have a good doctor right on target!! Gabapentin from what a top psychiatrist in San Diego told me years ago is a cross over drug to help against withdrawl symptoms from certain drugs. I myself had horrible augmentation from DA drug and my GP put me immediatly on gabapentin. We have worked together with the information on this website that I have downloaded and brought to him regarding iron and medication. I'm feel better and more like a team since he is willing to learn and work with me.

Mike-tyson profile image
Mike-tyson

I was on the same when switched to Gabapentin. I take 300mg at night and also use magnesium cream from Amazon U.K. on bottom of my legs before getting into bed. This mixture at the moment has sorted my RLS 😊😊

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