Out of the blue

[marsha2306]

Up until a few months ago I was taking gabapentin and barely having a symptom. Now I am up half or all night pacing. I can't even stay in the bed for 5 minutes before my leg(s) start moving with a vengeance. I have no idea why this is happening.

[LotteM]

Two things. Your RLS is going through a bad spell. That may happen. Anything that has changed in your life and/or behaviour a few months ago, before or around te time when the legs started to disbehave? Or gabapentin may no longer work. That has not been reported before - as far as I know. But I do know Alison7 (?) the retired gp, says she not only became tolerant to but even augmented on the closely related med pramipexole.

Edit: Sorry for the confusion. Writing mistake! I meant pregabalin (not pramipexole) in the previous phrase, as Alison7 herself corrects me below. I guess I was tired...😒

Look at your situation first and experiment. And maybe talk to your doctor and discuss. Adding another med, from another family of meds!, may be an option to discuss. E.g. a low dose of tramadol (50mg) or oxycodon (5mg) may help to get you through. Getting exhausted from the bad nights is only likely to worsen the RLS. I hope this helps. Good luck.

[marsha2306 in reply to LotteM]

Nothing as changed!

Also, I’m pretty sure that Gabapentin in not related to Pramipexole. Pramipexole is a DA and Gabapentin is not.

[Hidden in reply to marsha2306]

You're right! I just looked it up and it is not a DA. I'm confused now; the PM I'm just about to send you mentions augmentation, which is a side effect of DAs.

To anyone: can you augment on Gabapentin even though it's not a DA?

[Hidden in reply to Hidden]

The medicine I became tolerant off symptom wise and augmented on was the similar to gabapentin one Pregabalin not pramipexole

[LanaCSR in reply to Hidden]

Oh nooooo, Alison, say it ain't so!! I have been on Lyrica for a few weeks now and it's working GREAT for me, better than anything I have tried...and, believe me, I have tried almost everything. I was so excited about Lyrica because, from what I have read about it, it is NOT supposed to cause augmentation. It saddens me to hear that it did for you.

[Hidden in reply to LanaCSR]

I think it's rare what happened to me though i took pregabalin way before most people around 10 years ago or more as I was given in for a spell of neuropathic pain and found it was like a miracle for my RLS by chance, i begged my GP to allow me to stay on it and contacted the drug company to let them know about this unexpected effecton rls. they said that trials were just starting as others had reported the same. i had never heard of augmentation and tolerance for rls. so either it rarely happens or I discovered the wearing off effect earlier than others having been 1 of the first to take it for rls..

i would enjoy it while it lasts but just be wary if the effect wears off.

[LanaCSR in reply to Hidden]

Thank you, Alison!!

[LotteM in reply to marsha2306]

No. I never said that. Gabapentin is an alfa2delta ligand, a class of meds entirely different , and with a different mode of action, than pramipexole, a dopamine agonist. I just tried to bring up the idea that you may have become tolerant to gabapentin. Odd things may happen. And augmentation has never - to my knowledge - been reported for gabapentin, but at least once for pregabalin, which is in the same class. Just opening up possibilities that one doesn’t easily think of - as they are unlikely. But never say never.

Anyway, as nothing has changed I can’t think of any other explanation than sudden tolerance to the effects of gabapentin. Time to talk to your doctor and discuss changing approach/medicines.

I hope you find relief again soon!

[marsha2306 in reply to marsha2306]

Lotte, i was replying to Jess, not you.

[Hidden in reply to marsha2306]

Lotte's just trying to help. Let me know who to send the PM to.

[marsha2306 in reply to marsha2306]

Sorry. I put my reply under you.

[LotteM in reply to marsha2306]

Oh. The order of the replies do get mixed up sometimes! Never mind. Have not taken it personally as I did make a mistake with te med names.

So, now that the gabapentin apparently stoped working, what’s your plan? Think first and then discuss with your doctor - that’s what I would do. Keep us posted!

[Hidden in reply to marsha2306]

Pregabalin is the one related to gabapentin and the one I was on, not pramipexole. These drug names are easy to het confused.

[Hidden in reply to LotteM]

The medicine I talk about is pregabalin which is similar to gabapentin, not pramipexole. easy to get the names mixed up

[Hidden]

I’m sorry to hear this! How annoying! My limit of consecutive good nights seems to be stuck at 10. Once I hit that 11th night, bam! Bad leg night! Very rarely can I make a connection between what I did on that 11th evening and my bad night, so it’s very annoying!

I hope that this is just a fluke for you and things will get better soon!🤞🏼

[marsha2306 in reply to Hidden]

I was fine for over 2 years!

[Hidden in reply to marsha2306]

ok, I will PM you.

[marsha2306 in reply to Hidden]

Ok

[Grammieof4 in reply to Hidden]

I can’t open the PM but, no, I’ve never been on Ropinole. I’ve been on Gabapentin since I started to get RLS, which only started a few years ago. It has worked amazingly until recently.

I also had an iron infusion a couple of years ago and my ferritin is still above 300!

[Hidden in reply to Grammieof4]

Oh, sorry. Yes, my PM said Ropinerole and not Gabapentin. My bad. Although I got the medicine incorrect, my message still applies.

Am I talking to Grammy12 or marsha2306? I'll resend it to Grammy12, but let me know if you don't get it. You should know when you get it since a circled "1" will show up next to the chat icon.

[marsha2306 in reply to Hidden]

It’s supposed to be Grammie12 but somehow the RLS Foundation gave me another name (based on my email)

[Hidden in reply to marsha2306]

Hi. I haven't resent the PM since I was confused. Can I resend it to this username?

[marsha2306 in reply to Hidden]

Do the Grammy one.

[Svengolly]

Gabapentin is my #1 as well . But for me it always augments quickly . Ie 100mg every 2 hrs then 200 then 300. Then Levodopa cardoba as my 3 day holiday drug ..then back to gabapentin.

[Svengolly]

What dosage ?

[Grammieof4 in reply to Svengolly]

I take 600 in the morning and 600 in the evening.

[Svengolly in reply to Grammieof4]

I think that is not near the daily max but I would take it in four or more doses . But also definetly get a holiday drug like levedopa .

[Grammieof4 in reply to Svengolly]

I’ve tried 3 times a day and it made no difference. The 1200 mg is for unrelated nerve pain and my doc said you need more for pain than RLS so I’m not sure why it’s not working all of a sudden.

Not sure how levodopa would be a holiday drug since it’s difficult to get off a DA. And, as I mentioned earlier, I won’t take a DA.

[Svengolly in reply to Grammieof4]

A .. it’s not a da

b.. the holiday I take is 3 days

Then the gabapentin works for me again .

[marsha2306 in reply to Svengolly]

Not trying to argue but I’m pretty sure levodopa is a DA.

[Truth2018]

Try compression hosiery from pharmacy y

[Truth2018]

Other drugs to to try are tramadol, codeine, ropinirol, rotigotine, pramipexole, pregabalin and gabapentin

[marsha2306 in reply to Truth2018]

Thanks. I will not take a DA. Too many things about it scare me. I already take Gabapentin and I’ve tried Pregabalin. Also tried tramadol and it didn’t do anything for me. I don’t have pain associated with my RLS, only the jumping/jerking.

[Truth2018 in reply to marsha2306]

Codeine does help with rls but doesn't work for everyone.

DA is the only licensed med for rls.

Augmentation does occur with all the meds.

Compression hosiery could be tried with any of the meds as long as out is not too tight to interfere with blood circulation.

[Pippins2]

Targinact is also licensed for RLS in some countries including the UK x

[Grammieof4 in reply to Pippins2]

Never heard of Targunact. What is it? I’m in the US.

[LotteM in reply to Grammieof4]

Targinact is brand name of oxycodon (extended release) combined with naloxon. The latter should help against constipation.

[Grammieof4 in reply to LotteM]

I know I’m being obstinate but I really don’t want to start with opioids either .........

[LotteM in reply to Grammieof4]

That is up to you. Although I van understand your feelings about it, I think. For me, only 5 mg in the evening (2h before bedtime) has given me my sleep back. Which is slowly beginning to give me my life back - even though I still have to get up 1-2x a night and pace for 10 min. But that may be the drop in iron as I found out a few days ago.

Btw, here in NL a ‘war against oxycodon’ has started recently. With instances of negative attention and full focus on the no. of OD deaths. I hope our common sense revails.