Withdrawal symptoms: I talked to my... - Restless Legs Syn...

Restless Legs Syndrome

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Withdrawal symptoms

Madolegs profile image
15 Replies

I talked to my Doctor yesterday about my RLS as he put me on Gabapentin 3 a day just before the lockdown but they were making me so tired and fall asleep so i weaned myself off them. he's now putting me on Pregabalin 1 tablet 2 to 3 hours before i go to bed for a month then let him know how i'm getting on as he would probably have to increase the dosage and stop taking Ropinirole went i start taking them as they are not working . i'm a little bit worried about stopping Ropinirole as iv'e been on them that long and i have a feeling i will have some withdrawal symptoms i thought i would come off them gradually but he said the to tablets don't mix

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Madolegs profile image
Madolegs
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Guildenstern profile image
Guildenstern

Thank you!

Hi

What dose of pregabalin have you been prescribed? Tablets come in several different doses, e.g. 25mg, 50mg, 75mg so which one are you taking?

It's NOT true that dopamine agonists, such as ropinirole and alpha 2 delta ligands such as pregabalin don't mix. Some people take them in combination for RLS.

I took both together for 12 months.

However, it may be better to reduce and stop the ropinirole anyway.

Withdrawal effects can occur, that is true. You can minimise these by gradually and slowly reducing the dose of ropinirole.

It depends on what you current dose is, you would think that thr lower thr dose the easier it would be to withdraw, but it seems to be the other way round.

You could reduce the dose in 0.25mg to 0.5mg steps every 3 - 4 weeks.

Certainly you MUST not stop taking ropinirole suddenly.

Madolegs profile image
Madolegs in reply to

i don't know what dosage he's put me on i went to the chemist yesterday for them and they can't get them till monday. I am on 3mg of ropinirole when i asked the Doctor about coming off slow he said they don't mix and it was not a miracle fix and would have to persevere and ring him after a month to let him know how i was getting on with them and would probably have to up the dosage but i'll ring him when i get them and double check because when i tried to come off them while i was trying Gabapentin i was just walking the floor and my legs ached with walking so much it was horrendous i just started taking ropinirole again . The annoying thing is there's nobody to talk to about RLS other than everyone on here who are going through the same ordeal .The doctor doesn't know a lot about RLS he admitted that to me he did mention sending me to a clinic but he then said it would probably be closed with the virus still around .

in reply to Madolegs

It's quite important when taking a drug that you know the dose, i.e. what strength tablets are, not just how many to take. If you get a copy of the prescription it will say the dose on it. When you get the tablets it will say it on the packet.

A typical starting dose of pregabalin is 50mg, although it could be only 25mg. The dose then has to be built up at about 25 mg every 3 - 4 days.

STARTING on " 1" tablet could be either 25mg or 50 mg. However this will probably not be enough. It is normally expected that the minimum effective dose is 150mg.

In addition, it takes 3 - 4 weeks for it to start working. So you would need to wait 4 weeks to see if it works, true. But it would still need to be an effective dose. It doesn't seem as if your doctor has prescribed an effective dose.

Nonetheless, WHEN it doesn't work, it would be a good idea to increase it, i.e. at least 150mg and up to 300mg.

Take it ONLY at night. It will make you drowsy. That's OK at night and should improve after a few weeks.

The dose of ropinirole you're taking is too high anyway. It's not working. It would be far better, and give the pregabalin chance to work if you withdraw from it. what happened when you tried to stop ropinirole before was withdrawal effects. This will happen if you reduce it too fast.

The solution is to reduce it very slowly, as I previously suggested.

An opioid would also help, if your doctor would prescribe one e.g. codeine or tramadol.

Joolsg profile image
Joolsg

You can take both Ropinirole and pregabalin. If you’re suffering augmentation on Ropinirole and need to come off it, please do so very, very slowly.

LotteM profile image
LotteM in reply to Joolsg

+ on Joolsg. You may want to refer to published papers that discuss treatment of severe and/or refractory RLS, eg those by the IRLSSG. This one is very complete and refers to all the relevant science papers: uptodate.com/contents/treat...

macewan13 profile image
macewan13

Hello Madlegs1,

Like the others who have replied, I came off Ropinirole slowly while starting on Pregablin - probably about a month simultaneously.

Madolegs profile image
Madolegs

Thank you all i will ring the Doctor on Monday as im not happy about not coming off Ropinirole gradual it was bad enough trying 1mg i dread to think what it would be like stopping 3mg all in one

LP557 profile image
LP557

Hi you must be at your wits end with the worry & advice about stopping Ropinirole.

If you read your instruction leaflet that is inside of your meds ,then you will find that it states that you should ' never stop taking this med all of a sudden'.

I have been taking Gabapentin for many years ,started gradually & over weeks added one extra per week,its the same for stopping gabapentin as you have to reduce by 'one per week' its a long process, however if gabapentin is stoped suddenly ,then it can cause series health issues.

I would strongly advise you to phone 111 & ask for advice if you can't talk to your doctor, even a pharmacist may give you advice if you phone one.

Pregabilin is stronger than gabapentin because the specialist at the hospital told me it is.

I hope you are okay & have not suddenly stoped taken any med without medical advice & if you read the instruction leaflet ,then that will also help your issues as regards withdrawal from the med.

Take Care

Madolegs profile image
Madolegs

Hi you are right about stopping them all together i went away for the weekend a few years ago and could not find the Ropinirole i thought i had forgot to pack them i walked the floor all night i could not sit down or stand just walk i was exhausted the next morning and my legs ached terrible it was a nightmare but my wife found them in a zip we had not looked in and that's why i am worried i don't want to go through that again i rather stop on ropinirole

Joolsg profile image
Joolsg in reply to Madolegs

That’s why it is absolutely essential to reduce Ropinirole very, very slowly over a period of at least 3 months, preferably a year.

Gabapentin and pregabalin will not help your RLS while you’re suffering augmentation and withdrawal symptoms from Ropinirole.

Gabapentin and pregabalin take at least 2-3 weeks to fully work and will help once off Ropinirole.

Read everything you can abolition Ropinirole and pramipexole on here.

RestlessDebbie profile image
RestlessDebbie

Gabapentin can make you drowsy when you first start taking it. After a few weeks your body and brain adjust to it and the drowsiness goes away. I can tell you that I am currently on 60mg 3 times a day and my severe rls is under control.

I would recommend giving it another try.

Ebi1909 profile image
Ebi1909 in reply to RestlessDebbie

I guess you mean 600mg? I thought about increasing as 3x 300mg doesn't help that much.

kleelibby profile image
kleelibby

Hopefully you’ll get some relief soon. I also took gabapentin 3/day. I really thought I was slipping into dementia my memory didn’t work at all. It was a side effect of gabapentin. Titrated myself off and feel so much better, memory seems intact. Good luck.

Madolegs profile image
Madolegs

i was the same started on gabapentin just before the lockdown i thought great i'm coming off the ropinirole after about 30 years now but it didn't help at all i still kept getting the the restless symptoms memory trouble and i was falling asleep sitting down from around 7 o'clock my wife kept waking me at the finish i wean my self off them feel a lot better now

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