Joolsg

Lyrica is an alpha 2 delta ligand, just like gabapentin, although they are absorbed in a different way. I don't understand why your GP has you on Lyrica and Gabapentin. I would only take Lyrica as it's better absorbed with fewer side effects.

So, assuming you are on tramadol and Lyrica, is white wine ok? Tramadol leaflet warns not to take with alcohol so I would be cautious.

However, someone who has tried it and suffered no ill effects may come along to let you know they are still ok and you could risk it.

Glad you made it through withdrawal.

Jools

Joolsg

On the weight gain side, I'm on 150mg of Lyrica and have put on 7 pounds in 6 months but think thats because it definitely increases appetite.

I haven't noticed any mood changes and as you've been on a very similar med ( gaba) without mood changes, then you shouldn't have them with Lyrica. Fingers crossed.

Hidden

I agree with Jools on why you are taking Lyrica AND Gabapentin both similar meds. Lyrica is a stronger med than Gaba so different in dosage. Also on the tramadol it does say on the box or mine does that not to take alcohol. But, i suppose its a try it and see, if you have a really bad night of RLS, you will know not to try alcohol again. I found alcohol was my only trigger so i just dont bother anymore with drink, i was awake all night with raging RLS. I only clicked after the second day of taking it , that was the reason for my 2 rubbish nights. It was at Christmas and was enjoying having a little drinkies on the day and Boxing Day.

I gained weight when i tried Gabapentin. Good to hear you are now dopamine free.

Bganim1947

Not to worry jools & Elisse, I'm not taking Lyrica and Gabapentin together. I guess I wasn't clear. My pharmacist actually w/GP's approval worked out a titration schedule to replace my Gabapentin doses with Lyrica slowly since it takes about 2 weeks to kick in.

First week I I D/C morning Gabapentin dose and replace it w/ 100 mgs of Lyrica. I keep tramadol I the mix. The remaining later afternoon and bedtime doses of Gabapentin & tramadol stay the same that week.

The second week, I replace both morning and afternoon does of Gabapentin with 100 mgs of Lyrica. The third week I take 100 mgs of Lyric in lieu of all three daily doses of Gabapentin. All other meds -- tramadol and ironstay the same. Then we see if I need to cut back on Lyrica a bit.

Until I am at full dosage of Lyrica in 3 weeks, I am taking 5-325 mgs of Percocet, in place of tramadol at bedtime, PNR (only if needed) until I am totally on full strength Lyrica. The Percocet stops an RLS sensation in about 30 minutes so I can sleep.

That's the plan. So far it's working to minimize RLS.

Joolsg in reply to Bganim1947

Thanks for clarifying.

So glad it's working to minimise the RLS.

Take care,

Jools

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Bganim1947 in reply to Joolsg

Jools thank you for your personal message to see how I was doing. I meant to tell you, thought I did yesterday, but couldn't find the message.

I think you did say you were on Lyrica, how much. Sorry, if you answered that, I can't find that message either.

Someone this morning said that Lyrica caused augmentation. Is that possible? I thought it was different from the dopamine agonists because it didn't. Same person said there's withdrawal to get off. I sure don't ever want to go through that again.

My best to you.

Bganim

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Joolsg in reply to Bganim1947

Hi Bganim,

Pregabalin ( generic name for Lyrica) was found to cause augmentation in a very small number of people on a trial carried out in New England. However, the general view on here, and from experts, is that it does not cause augmentation.

Withdrawal from any drug is difficult ( although dopamine agonists are by far the worst ever!!!!) and if you need to stop taking Lyrica, just reduce slowly over time and it shouldn't be a problem. It will be nothing like withdawal from Mirapex/pramipexole/ropinirole.

I stopped gabapentin cold turkey and didn't get any withdrawal symptoms so I think it is completely different to withdrawal from a DA.

I am on 150mg of pregabalin- 100mg at 8.30pm & 50mg at midnight as well as 10mg oxycontin twice a day and 5mg at 2 am.

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Alison7

I too have peripheral neuropathy abs take lyrica. I don't think everyone is affected this way but I am certain it quickly causes weight gain in me. I can't work out the mechanism. I was on it for several years, stopped it and weight fell off, back to normal, no effort, then restarted at 75mg and weight galloped on again. When I'm up at night which is of course often, I have this drive to eat which doesn't occur day time. I also do think it makes me anxious if there is something to worry about I find it harder than normal to get it into perspective and think it through.

I'm trying to come off again and try the ferrous bisglycinate at night, if possible every 2 days as recommended by John Hopkins which various folk have told me about, to try to get ferritin up to 100.

My peripheral neuropathy isn't painful except occasionally & I find paracetamol quite useful, so don't need the lyrica for pain.

Again not everyone is affected like I am but I'm pretty certain that lyrica did cause augmentation. I would stick to as low a dose as possible, just take at night & be wary if the effect wears off

Bganim1947 in reply to Alison7

Thank you for your reply. What do you mean be wary if effect wares off. How did it cause augmentation?

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Alison7 in reply to Bganim1947

I should add that I'm honestly not a scare mongerer. I am a sensible retired Dr. Whatever 'experts' say patients are the actual experts and I used to find that over my career there were many side effects of drugs which weren't apparent in trials where patient numbers & years of taking are smallish which then become apparent later. It's obviously a different mechanism from eg mirapex but I can only give you my experience.

Before lyrica I would wake say once or twice at night & occasionally have symptoms on long journeys or at the theatre & would have stopped by say 3-4am

Now on no treatment my RLS will start say 8pm, affect arms & legs, wake me say every half hour to an hour till say 5 then I might get a couple of hours though it can go on till 8 or 9 am.

It's really disabling now. When I started the lyrica by chance I was a working, well functioning Dr. Thankfully I am now retired as there is no way I could now work.

No way of knowing if this would have berm the natural course of things without the lyrica or not.

One of the noted withdrawal effects is restlessness.

I wouldn't say don't take it but just be aware of the potential. As I said I have 10 years of experience of lyrica which is likely more than most

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Bganim1947 in reply to Alison7

Thank you Dr. Alison7. Your reply was sobering, ha,ha, given my topic title. But reading about your experience, especially given your professional background, what would you recommend as a viable treatment for RLS?

I find it so disturbing to think that there really are no reliable long-term treatments. That's pathetic given the level of medical research and treatments available in the US and Europe.

I have been doing fairly well on a regimen of 1200 mgs of gabapentin 3x/day and 100 mgs of Tramadol 2x/day, plus 28mgs of Iron Bisglycnate 2x/day, supplemented by 5-325 mgs of Percocet PNR, if I feel an episode coming on. I'd prefer to stay on exactly that combination of medications, but I am very concerned about becoming dependent on Percocet over the long term since I do tend to get an onset of RLS between 10 to 11 pm most nights.

Like you, I was getting a full body presentation on my RLS while on Ropinerole. I had to titrate off an overdose prescription from a neurologist who took me from 2 mgs of regular Ropinerole 2x/day to 12 mgs of Extended Release 1x/day, which eventually resulted in severe augmentation. That led me on a desperate internet search, which thankfully brought me to this site. Now, since finally titrating off ropinerole with the help of my GP (fired my neurologist) down to 2 mgs, I decided to go cold turkey and get off ropinerole entirely.

I am 3 weeks past beginning the cold turkey, and think my withdrawal symptoms have finally subsided. I am now trying to find a treatment plan that works for me. I am not convinced that Lyrica is it, even though my GP and even Dr. Buchfuhrer, who is one of the top RLS research specialists at Stanford I contacted through referrals from members of this site, suggest it as being the most affective.

I am just wondering, given the fact that you are a physician who is actually an RLS sufferer, what you would suggest to your patients now having gone through this throughout a good part of your life?

Thank you in advance for any information you might be willing to share with me.

Bganim1947

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Alison7 in reply to Bganim1947

Hi again, the thing is I am absolutely no expert! Basically nobody I have found in the UK is. When I was working I had no idea about this site or John hopkins or any of these treatments which I have now researched over especially the last 2 years once I tried to come of pregabalin.

I never took eg ropinorole. I was very wary of the way it was marketed to Drs & am so glad I didn't as it was certainly marketed as 1st line.

I knew there was a story about iron but had no idea how to get ferritin above 100. That is going to be my current plan & I remain hopeful as we have to keep hoping.

I think it is probably correct that pregabalin is one of the most effective treatments. It was miraculous when I first discovered it. It's just the effect did wear off & I suspect by pushing the dose up augmentation occurred.

I'm wary of all sorts including opiates just because I've seen addiction but others have said addiction doesn't occur in the context of RLS - I'm not sure about that.

My current view for me is not to hope for a night's sleep without RLS, though if the iron world it would be wonderful - have you seen the info from this site which advises to take it alternate nights as you get better absorption that way?

My hope is to perhaps wake only once or twice and get a few decent full sleep cycles which should make a world of a difference in ability to function day to day & not feel like a zombie.

My colleagues over here and local GP still I think regard me as a bit potty! No one who doesn't have RLS at this level of severity appears to be able to understand the effects do they? I can sort of understand though as when it isn't present then it is impossible to conjure up the feeling.

So, to summarise, I have no more answers than anyone else but am just describing my experience.

One other thing I am convinced of and have heard others describe is that it is much worse if you eat late or have a large evening meal. I don't get why but have noticed it consistently.

I also would look out for other meds you might be taking as several for other conditions can make it worse

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Pippins2 in reply to Alison7

Hi Alison, just for your information I know of 2 RLS experts in the UK. Dr Kirstie Anderson of Newcastle and Dr K Ray Chauduri -London. They both have spokenat RLS. UK AGMx

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Alison7 in reply to Pippins2

Thanks. I'll look them up. For the moment I'm hopeful about my new iron preparation. I find the info on this site totally invaluable

A few months ago I decided to consult the London Sleep Centre which said it had a branch in Edinburgh ( I live in Scotland ). It turned out the branch was just a phone consultation.

The centre had advertised itself as being expert in RLS. I didn't find that at all. I paid £250 for a consultation which I think was to be either 30 0r 45 mins. I'd filled in a long form about symptoms and drugs tried. The guy obviously hadn't read it. After I'd talked for about 10 mins he said 'you've talked long enough' . he wanted me to go to London for a sleep study which was completely unnecessary as I know what I've got and would have been a big expense.

To cut a long story short he suggested various unsuitable meds and appeared to know less about RLS than I did.

That's why I said I couldn't find a UK expert.

Another neurologist said to me scathingly that folk didn't realise that Pregabalin is just a sleeping tablet! That was without him realising that I too have RLS.

Thank you to all for your input.

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BarnBarn in reply to Bganim1947

I have RLS 24-7 and I have taken Mirapex for years...it stops my RLS completely and I could not do without it!!!...

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Alison7

I just kept having to gradually increase the dose as each dose stopped working, started at 50mg at night which had miracle effect, ended up 150mg not working. I decided to come off gradually which made me even more restless. I stayed off for 2 years with RLS which was miles worse than it ever was before I started lyrica.

It's impossible to tell if would have been the same if hadn't taken lyrica.

When couldn't find anything else & was desperate asked to restart. 75mg works to some extent but effect wearing off again.

I found lyrica worked by chance as given it for neuropathy pain & found miracle effect. I called drug co to ask if they realised effect & was told they were doing trials as other folk said the same & I begged Dr to presribe it off licence. So I am likely to have been one of the earliest to take for RLS, prob a good 10years ago maybe.

It's hard to tell for certain & don't think the augmentation is as bad as with the dopamine drugs but my gut feeling is lyrica did do something adverse. Most definitely I needed to take more & more for it to be effective