Pregabalin

[BLUES60]

Just asking for a bit of advice, I am taking pregabalin for my rls the dose started off at 1, 25mg tablet at night no affect, then, 2 no affect, I have uped the dose to 4 and now it seems to me that last night I had a better night's sleep, but it's early days, my question is 4 to many or not enough, I had bad augmentation on parapexipole and am really worried I will get lt with this drug, I don't want to go through that again it was hell on earth, but on the other hand so is being awake all night, so I definitely need something, what is your advise? Thanks for any replies, could do with some of your wisdom.

[Pam34]

Hi

I’ve been on 150mg of Pregabalin for 5 mths now and sleep pretty well most of the time. I think the maximum recommended dose for RLS is 300mg so I don’t think you have anything to worry about.

I too have been through augmentation on ropinirole - not something I ever want to suffer again! My understanding is that you are unlikely to augment on Pregabalin although of course there may become a time where the drug stops being effective. I have also read on here that it is much easier to stop as long as you titrate down slowly. All the more reason to keep the dose as low as possible.

Good luck with it, I’m more than happy, I’ve got some semblance of life back. And that’s great 😀

Pam

[Madlegs1 in reply to Pam34]

Agree completely. Just to emphasize to keep to as low a dose as will control the nighttime rls.

Too high a dose may lead to unpleasant sideeffects.

You're doing great.

Watch the triggers.!😎

[Gazleebryan in reply to Madlegs1]

I too tried Pregabalin and had to increase dosage and eventually I had to stop taking is.m because it me have vertigo. I take 2 tramadol every night now and this has work for me for 2 years. Also I avoid sugar especially in the evening. I have notice if I have sugur with four hour of going to bed I struggle a bit.

[Highlighters in reply to Gazleebryan]

Are you taking tramadol immediate release or slow realise

[Gazleebryan in reply to Highlighters]

Immediate release

[Highlighters in reply to Gazleebryan]

Thank u

[rls_optimist in reply to Pam34]

Hi, Pam, I'm happy to hear that pregabalin is working so well for you. Are you taking any other meds for RLS?

[Pam34 in reply to rls_optimist]

I know, bit too good to be true! I take an iron supplement every other night - not really sure if that is helping or not. My ferritin level is above 100 but I think the thought is now that it needs to be much higher?

I augmented on ropinirole and became tolerant to Tramadol so the neurologist suggested this as the next step.

At the moment all is good. I suppose at some point it will become less effective - do I then increase the dose or supplement with something else? I hope that is some way down the road.

It’s not perfect but I think we are unrealistic to aim for that and sometimes I have disturbed nights for no apparent reason, but usually I get to sleep ok and probably wake twice for a loo trip. Legs or age - who knows!!!

Pam

[rls_optimist in reply to Pam34]

So happy to hear that, Pam. As for ferritin, the effective level varies according to the individual. 100 may be high enough for you, but it wouldn't hurt to keep taking iron supplements to see if it helps. Many of us find ferrous bisglyconate to work best, taken a few hours after last meal of the day, with orange juice or 100 mg vitamin C. When you get blood tests, make sure your transferrin saturation (TSAT) stays below 45% to avoid iron overload. (TSAT is blood iron level divided by total iron binding capacity (TBIC). Blood test results don't usually report TSAT, but they do report iron level and TBIC, so you can calculate that.)

It's possible that your pregabalin dose may need increasing over time, but keep it as low as is effective for you. The recommended max is 300 mg. Also, be on the lookout for side effects. Some of us have noted some dizziness or sometimes a feeling of being tippy, off-balance. Also some report blurry vision in the mornings (I had that, too.) If side effects ever become an issue for you, you might consider gabapentin. I went back to that after the pregabalin side effects became an issue for me. Pregabalin is just a different way of getting gabapentin into the body, with better absorption, so it's essentially the same thing. I do need to take a fair amount more gabapentin than pregabalin for the same efficacy, but I don't mind that, since the side effects are far milder for me (no dizziness). But, as always, we're all different, so pregabalin may be the drug for you. Long may you enjoy relief!

[Pam34 in reply to rls_optimist]

Thanks for taking the time to type up at that info - much appreciated.

I do take iron bisglycinate every other night but have never asked for my TSAT score so that’s worth knowing when I next get checked.

And I do get a little off balance if I get up in the night and perhaps stagger a bit now and then! Nothing I can’t put up with though while I’m getting a reasonable nights sleep. But nice to know I have an alternative in gabapentin.

When I look back to how bad things were with ropinirole and then when the Tramadol lost its effectiveness the future seemed pretty bleak. Now (apart from the Brexit mess) it seems quite rosy!

Pam

[rls_optimist in reply to Pam34]

Hi, Pam, as I wrote to you, blood test results don't usually report TSAT directly. But they DO report iron level and total iron binding capacity (TBIC). You'll have to calculate TSAT yourself: it is iron divided by TBIC. For instance, my iron/TBIC was 101/331, which is 0.305, or 30.5%, well below the 45% max.

[Pam34 in reply to rls_optimist]

Sorry, I misunderstood. All clear now, thanks

[Highlighters]

Hey

I have just been started on 2 75mg of Pregabalin and doc said that it wasn't that high so u should be ok

[Rocket56]

Hi

I have been on Pregabalin for just under 3 weeks for the purpose of treating nerve pain in my left thigh, I’m also on Sifrol 0.50mg for RLS, the Pregabalin seems to be working well however I’ve been told by my GP this drug can take up to month to have full effect, as far as sleep goes I certainly agree the Pregabalin does help.

The Sifrol I’m a bit unsure as to what this is doing I’ve been taking this for roughly 4 months I’m also being monitored weekly by my GP

I hope things stay stable I wish you well.

[Parminter in reply to Rocket56]

Sifrol is pramipexole, and 0.5mg is pretty high. The starting dose for RLS/WED is usually 0.125mg, and the new guidelines form the RSL experts is to keep pramipexole at 0.25mg or below.

You are in danger for augmentation, so please take care. After only four months on the drug you may be able to reduce the dose now.

[involuntarydancer in reply to Parminter]

An even better starting dose is half of a 0.125mg tablet and I would concur that 0.5 is far too high for a starting dose. In your shoes I would reduce/eliminate pramipexole for a while (this is likely to result in temporarily worsened symptoms) and if necessary start again at a much lower dose in a few months and not increase the dose above 0.25mg whatever your doctor says (supplement with other drugs such as pregabalin if necessary). Otherwise there is a substantial danger of a very difficult withdrawal down the line. While on pramipexole it is important to keep iron levels as high as possible. Get a serum ferritin rest if you haven’t already and get the actual figure - not just that you are ‘normal’. If below 100 start a supplement.

[tanya71]

Hi. Know how you feel, rls, for me, is like Chinese torture.

I found pregablin didn't work for me as I was taking more and more as the weeks went on. After going back to docs again and again I eventually changed to Ropinarole going up to 4mg at night. But it wasn't working so I actually started to staggered my tablets with permission from the doctor. Taking 1 in the morning 2 after tea and 1 going to bed. It worked so well I've reduced my tablets. I now only take 2 Ropinarole after tea.

I hope this helps. Good luck.

Tanya

[Lordancer]

I only know about ropinirole.

I've been on it for just over two years (2mg) and it worked really well till recently when I started to get augmentation.I consulted a specialist in Bristol which was really helpful . I am now on gabapentin as well rather than increasing the dose of ropinirole as the side effects are quite odd, compulsive behaviour in many ways .

Apparently it's a gene we have all inherited from Eastern Europe, the condition does not exist in Asia

The last few days I have been better ,I get it as soon as I sit down but I don't get it when I go to bed at night however I can wake with it

Hope this is of help

[LotteM in reply to Lordancer]

If it was that simple, a gene. And not present in Asia. As far as the current knowledge goes, there are multiple genes involved, all with only a minor contribution to RLS. And RLS IS present in Asia. There is just no information available on prevalences in north- and central Asia (Russia and surrounding states). See papers by Winkelman et al (genes) and Picchietti et al (prevalences) in Sleep Medicine no 31 (2017).

[Bee27]

I take 1.25 mg of Ropinrole and have just started on Pregabalin 0.50 mg. We’ll see how that works!!!

[mogerrober]

Preg. will not augment your dopamine production as it does not affect it. It works through impacting your nervous system, in other words it hides the RLS, but does not take it away. You can however get addicted to it and get used to it.

[RosieRow]

I've recently come off Ropinirole (1.5mg) because I was augmenting. Having had a fortnight with only 2 x 5mg Oxycodone and codeine (which worked well) I started on 50mg Pregabalin on 1st Jan.

Am now up to 100mg but am not convinced I'm getting great benefit yet. I was slowly trying to reduce the Oxyc and codeine and felt I'd stabilised on 5mg Oxyc and 60mg codeine and things were improving, but when I tried to reduce the codeine, even by just 15mg, I started getting bad nights with sharp but relatively short (half an hour) spells of RLS and even fell asleep standing up as I was walking round! So last night I reverted to 5mg Oxyc, 60mg codeine and a top up of 5mg Oxyc in the middle of the night. I had a great night's sleep with no RLS symptoms!

So, as yet, I'm not convinced Pregabalin is working well enough for me but am still hoping it is simply taking its time in getting to full effectiveness. I shall increase to 150mg on Sunday and then give it time to take full effect before beginning to decrease the Oxyc and, finally, the codeine, though I'd be happy to stay on codeine if necessary.

Don't know if this helps - it's just my story on Pregabalin so far!

RosieRow

[rls_optimist in reply to RosieRow]

Hi, Rosie, a couple of things: one, the pregabalin can take up to several weeks to take full effect. Two, if you've recently come off ropinerole (and congratulations for that, that's no small feat!!), it can take 2-4 weeks or more after stopping for all the ropinerole to clear out of your system and get you past the withdrawal. I'd say be patient, give it time and have faith. If the pregabalin is still not helping much after another, oh, 2-4 weeks, you may need more. And nothing wrong with maintaining on a combination of pregabalin plus an opioid, as you're doing now, as long as you try to keep from increasing the opioid dose over time. Good luck, and congratulations!

[RosieRow in reply to rls_optimist]

Thanks so much for your encouragement and your congratulations about coming off Ropinirole. You have told me exactly what others have and what I now keep telling myself - the transition still needs to be slow and steady, just as I took the withdrawal. But I am patient for a week and then think surely something must be different now and try to reduce either the Oxyc or the Codeine, and fall 'flat on my face' again!!! So it's back to slow and steady - which I'm happy to be as I'm away for three nights this week with meetings so I need to get my sleep if I'm to cope, so will take what I need.

all the best,

RosieRow

[Hidden]

hi, my pregabalin story. took it for nerve pain over 10 years ago, discovered by chance it helped my rls. worked very quickly at 50mg but then the effect kept wearing off and the dose had to be gradually increased. i took no more than 150mg as by that time i'd put on a lot of weight and my balance was poor. when the effect of 150mg wore off i decided not to increase further. i never took a DA. i wasn't addicted, it didn't affect my sleep directly but it was hard to come off as each dose reduction though small resulted in a worsening of the rls. the very worst was reducing below 50mg to 25mg then none which i had to attempt several times. i had a good few years on it though. i think it did cause augmentation. each time the effect wore off i had symptoms earlier in the day and all over my body and head.

not taking anything now except iron, no sugar and coffee during the night. rls not good, wake several times each night

[Millie09 in reply to Hidden]

So very similar to myself Alison7 . Drives me mad

[robert1957]

Please research magnesium deficiency and symptoms of magnesium deficiency also the benifits of vitimins d3 and k2mk7