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Restless Legs Syndrome
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Pregabalin

Hello

I’m looking for some positives on Pregabalin use. I’ve been through ropinirole and augmentation and then took Tramadol for a couple of years with good effect. This no longer works.

The neurologist has now prescribed Pregabalin (as did Dr B.) and I started with the low dose of 50mg last night to be increased gradually.

I’m trying to be positive about this step, I think trying to remain positive and not let all the negativities creep in is very important to my frame of mind and how I deal with the RLS. Sometimes it’s difficult!

So can anybody please give me any positive experiences of Pregabalin - all I seem to read are negative but there must be a reason why it is prescribed. I don’t want to hear about weight gain and all the other seemingly awful side effects, just the positives please!

I can then try and make my own mind up about how I feel it is working without looking for the bad in it! Fingers crossed and thanks!

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Of course - just reading this back I realise that anybody having positive effects of Pregabalin may not be on the forum I guess. We tend to visit when we have a problem rather than when things are going well. But just in case you are out there .......

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I just started on gabapentin (same sort of drug as Pregabalin) and also use a 1 mg Neupro patch. Together they work great. I tried Lyrica without a DA and just couldn’t do it. I’m RLS free at this time.

(I also went through augmentation on others as well)

Anyway, all positive here so far, I’m about 3 weeks into it.

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Hello and thanks for replying. It's nice to hear of something that is working. I sometimes find this forum depressing reading but I guess that's why we come on here - looking for answers. I really hope it continues for you.

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I know it, this is just such a hard disease. Please keep me posted how it works, sounds like we are on a similar journey

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Will do. Hopefully positively!

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Hi Pam,

I’m on 150 mg of pregabalin. Like you, I was put off by the stories of weight gain etc.

I’ve been on it for over a year and titrated up from 75mg to 150mg. At first I was ravenous on Pregabalin and did put on about a stone over 4 months but the hunger feelings settled down after about 5 months and I kept an eye on what I was eating and now I’m back to the weight I was originally.

Other side effects were dizziness & blurred vision but these also settled down and can be minimised by taking pregabalin at night and not in the day.

Pregabalin has helped enormously and you should stick with it for at least 4 months. The side effects will settle and it will help you sleep. I also take OxyContin and I think the two drugs work well at low doses for RLS.

Hope this helps

Jools

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Hi Pam...if you don`t mind my saying the following - why not forget the experience of what others have said and allow yourself to see whether this is what works for you ? - remember that most people only ever get in contact with a site when they are having negative experiences and those who are getting along well do not post the good...it is important you allow yourself the time to see exactly how this either works for you or affects you...and then if it is a negative thing you can ask to be changed to another type of drug - nearly all of us with RLS will need to be on a medication of some kind for the rest of our lives so we need to find the right drug - allow time to tell how this goes for you...sorry if this comes over in any negative way as it is not meant to be...I also have been swayed by what others have said before but found to my pleasant surprise that a certain drug worked for me - currently I am on a prescription of buprenorphine which is addictive - but seeing as it is a lifetime ailment and any medication is going to be a daily thing the "addiction" side of things doesn`t come into it for me - I was on Ropinirole but had to be taken off due to bad experiences...remember we are all individuals and what works for one may not work for another...good luck.

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Of course I don't mind your comments. I actually agree with what you say completely.

I think I was just looking for reassurance, I'd read so many negatives posts on here about pregabalin that I have delayed starting it even though the tramadol was no longer effective. But to hear someone say something positive does give me a boost!

Now that I have started it I will stay with the drug and I will give it chance to work.

I'm glad you have found something that works for you, I too had a dreadful experience with ropinrole and augmentation.

Thanks, Pam

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I second most of the responses here, in particular Jools. I also have had good luck with pregabalin and alternately gabapentin. I will add this: you may have augmented on Tramadol. It's a synthetic opioid, and is the only opioid-like drug known to cause augmentation in some people. So pregabalin or gabapentin will likely help (assuming side effects are tolerable for you, but give them time to settle, as Jools says). But my guess is you may also need a low dose opioid such as OxyContin like Jools and others takes, or methadone as many others of us take. Good luck!

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Thanks for this. I did wonder if I had augmented but I think I had just grown tolerant. No early onset of symptoms etc. Anyway a break at least will do me good. 2 nights in and all good so far. Still getting the RLS but it’s not keeping me awake for as long and only on 100 at the moment. Early days and no noticeable side effects. I suppose I’m also perhaps suffering a bit from stopping the Tramadol- will take a few days to get out of the system. But I can be patient- no quick fix as we all know.

And I’ll bear in mind that it may need tweaking with a supplement but I’ll give this chance to work first.

Thanks for the words of encouragement 😄

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Not only is pregabalin good for rls (for many), it also helps with deep sleep so it can be a double gain.

For me it was most effective combined with another drug so ultimately you may find yourself adding back in a small amount of an opioid (maybe you should move from tramadol to oxycodone or similar) or even adding back in a tiny dose of dopamine agonist. My weight gain was moderate and like Jules says it can be counteracted with vigilance about what you eat. Dietary modifications can be helpful in any event for rls.

I would say that although it can be depressing reading all the stories of people whose medication regimes are failing, there are also many good news stories posted on here and there is so much to be learnt from the experiences of others. You have also correctly identified that many people stop posting when things improve for them.

Good luck. I hope you get relief.

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Thanks for replying- it’s confirmed what the others have said and it’s reassuring to read. I’m careful what I eat anyway - been veggie for years and try and steer clear of all the ‘bad’ stuff - not always successfully 😅

I know what you say about reading other peoples experiences and if it wasn’t for this I would never have learnt I was suffering from augmentation- my doctor had no idea. So yes it is good, but it’s hard not to be swayed by the negativity sometimes- particularly when you are looking for the next step in treatment.

I think it’s important to separate the fact from the emotion in these accounts and that’s what I try to do.

And thanks for the luck - hopefully I’ll be posting a positive story in the near future!

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Lyrica has been good for me .

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Thank you. It’s really nice to hear the positives - I’m doing ok so far. Only 3rd day in and on a low dose so still have the restlessness but it doesn’t seem as intense and I am getting some sleep. Hopefully this will improve as I move further along. Long may it last for you too.

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It took about 6 weeks for me to feel a good relief of symptoms. I have not had any real side effects so far and have been taking lyrica for 20 months now. Good Luck

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That is really good. Long may it continue!

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I was started on Lyrica a few weeks ago, 50 mg the first dose just like you at night, then increased to 100 mg at night a week later, then added 50 mg in the morning a week later (where I am at now), and then this coming Friday I go up to 100 mg in the morning. Then I see the dr again to find out if I need to go up in the dose or stay there. I DEFINITELY am noticing a difference...and that's saying a lot because practically everything I have tried has either not worked for me or has augmented. Of course, I am having some side effects (the main one being swelling and weight gain), but I was told the side effects will eventually go away, but each time you go up on the dose the side effects will probably increase, as well. But even though there are side effects and even though I don't have complete resolution of my RLS symptoms, I am seeing enough of an improvement to stick with it. I am so excited and encouraged by the Lyrica as nothing so far has worked this well for me. I just hope I continue to do well or even improve further. So please hang in there and give the Lyrica a chance. And please let us know how it works for you. Good luck!!

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That’s really encouraging news. Thanks so much for the explanation. I hope it continues working for you. I too augmented on ropinirole and then became tolerant of Tramadol so I’m pretty anxious for this to work. I don’t expect perfection just some periods of good quality sleep!

I’m just curious though why you take a dose in the morning. I can understand for people who use it to control constant pain but I would have thought it would be more beneficial to us to take the whole dose in the evening. If you need to split it then tea time and bedtime. Did the doctor say why you should do this?

And yes, I aim to continue, and I’ll keep posting. Good luck 😉

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I have RLS in the daytime as well as nighttime and was told that the morning dose will help control daytime RLS. At least that's what I was told. *fingers crossed*

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Oh well that makes sense now. Poor you having it day time too, that must be awful. Even more important that this works!

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Fingers crossed for both of us!! :-)

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Hi

May I ask how you are getting on with Pregabalin? I ask as I am seeing my GP on Wednesday to ask to change from Gabapentin to Pregabalin. I have discussed this with my neurologist who verbally agreed but I have not got the post consultation letter yet (it can take ages). What I hope to get is better pain control and longer sleep. Perhaps I am being too hopeful!

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Hi Martino

Fingers crossed I’m getting on very well. About 100% coverage 80% of the time. I’ve tried to keep the dose low at 150mg and take it all in the evening but I don’t suffer from pain with my RLS although I think it is used to control pain as well.

Side effects are minimal, a few balance issues if I get up at night, but nothing I can’t cope with, and my appetite has increased, gaining weight is a side effect but I’m aware of it and try and keep it under control.

I don’t expect it to last forever but at the moment life is good again. I hope it works for you too. I know some people supplement it with a low opioid, rather than increase the dose. I haven’t had to consider that yet.

Pam

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Thanks Pam. I got the confirmatory letter from the neurologist today so I should start the switch from Gabapentin this week. A bit back Dr B suggested adding methadone instead of Tramadol. One step at a time though!

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Exactly. You may find Pregabalin is enough. As I said I’ve been on 150mg for 3 mths now and the max recommended dose is 300mg. Im hoping I don’t need to increase it but if it turns out necessary I may consider an opioid instead of increasing the Pregabalin. I always have at the back of my mind that eventually this drug will stop being effective and the higher the dose the trickier the withdrawal may be. Obviously I just hope it will keep on working forever 😂

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Thanks Pam. The doc has given me 150-75 twice a day. I am a bit uncertain. He says I can simply stop the 2700 of Gabapentin and start the Pregabalin but I wonder. The pharmacist thinks it will be ok so I will start at the weekend. (I am seeing my grandchildren and don’t want to spoil the time with them).

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Hi martino

I can’t help with the crossover but I stopped Tramadol and started Pregabalin on the same day with no adverse effects. But if you’re worried why not wait til after the weekend to start?

I’m just wondering why he has suggested twice a day when RLS is a night condition? My doctor suggested splitting my dose too but when I queried it they agreed there was no point spreading the dose. I take 150mg about 8.30pm. She also told me to titrate up to it to introduce it slowly. Day 1 = 50mg Day 2= 100mg Day 5=150mg. A few balance issues if I get up in the night but nothing I can’t cope with. Good luck and message me if you want a chat about it.

Pam

Ps - straight down to London after work today to see my grandchildren too 😊

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Thanks Pam. As I may have mentioned elsewhere I suffer with Small Fibre Neuropathy as well as RLS. I take the Gabapentin and Tramadol plus use a 2mg Neupro patch. I wanted more pain help so the Neurologist thought a switch from Gabapentin to Pregabalin could be helpful. He thought the Neupro and Tramadol would keep the RLS in abeyance and the Pregabalin would assist with managing the SFN pain. I will find out!

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