I am aware of the 2014 study on the efficacy of pregabalin compared to Pramipexole and I remember that one of the findings was that only 2% of those on pregabalin suffered Augmentation compared to 8% of those taking Pramipexole. I am also aware that a member ( I think it was Pam who is also a retired doctor) mentioned that she had augmented on pregabalin after being on it for many years. (I have read that the augmentation symptoms could also have been a progression of the underlying RLS, but the expert doctors were unable to reach any conclusion on this.)
I have a question for all those who have been on Gabapentin or Pregabalin for more that 2 years. Have you experienced a worsening of your RLS or has it moved to other body parts? I ask because I have suddenly started to experience RLS in my arms and hands again- something I last suffered while going through Augmentation on Ropinirole in 2016.
Could pregabalin be similar to dopamine agonists and cause more cases of augmentation the longer you have been taking it? I would be interested to hear from anyone taking pregabalin.
I may try to come off it completely for a few months to see if the RLS in my arms disappears. I am also on Oxycontin so could stay on that.
It could be triggers- I had a bad night last night ( with the legs) & being overtired always makes it worse - but I rarely get it in the arms. That’s why I instantly recalled Augmentation on Ropinirole.
I hope you’re wrong. I can’t really comment, not been on it a full year yet, never mind two.
I remember reading the article when I was looking for an alternative to ropinirole and chose to ignore the statistics thinking it couldn’t possibly happen to me twice. I look forward (or maybe not) to seeing what people say.
You’re sure it’s not just a bad period and things may settle down?
Thanks Pam- I hope I’m wrong too. I still get bad nights with the legs but I’m concerned because I have been getting the arm RLS late afternoon, early evening which is another reason I suspect Augmentation.
I think I’ll be campaigning for methadone here in England.
Yes to campaigning for Methadone! I think it is a crime that this miracle of a drug (for me) cannot be legally used in the UK. I suffered with progressively getting worse RLS for 35 years. I’ve been on a super low dose (5 mg) of Methadone since March. No RLS now. None! It is an absolute miracle and I cannot tell you how different my life is now. I feel like I’m in a different body. I truly wish that this could be available to all RLS sufferers. I used to post on this site regularly and I apologize for being absent. I just am sad because there really could be a solution for RLS sufferers if not for the anti opoid lobbies.
Thanks Lolly. I am delighted you have had such a great result with methadone. It’s the cheapest, safest opioid if used correctly at low dose and yet the medical profession fail to recognise its benefits for those of us with RLS. It will be an uphill struggle but we have to start somewhere 😊.
Hello i just wanted to make a small point as you are selling opoids so to speak. I decided after approx 4 and a half years that i wanted to stop using SR morphine tabs which i took for chronic back pain plus gabapentin. The morphine wasnt helping but i suppose my body had developed a resistance to the drug. Anyway i decided to wean off the 80mg a day and Oramorph i was taking. Last May during a holiday in Tenerife i had weaned down to 40mg which i must state i dud very slowly and wham my RLS developed and i have suffered ever since. I finally stopped the morphine completely the end of last year. Sorry for waffling on but i now know RLS can be a side effect of weaning off opoids so therefore is it really the best drug to use ?
It is used at low doses for RLS ( usually no more than 30 mg a day). It was the first known drug used to treat RLS in the 1600’s by Dr Willis ( EkbomWillis disease) and there are now numerous studies on the efficacy of opioids at low dose over long periods for RLS.
I realise that RLS is a known withdrawal side effect of opioids but it is usually temporary.
I agree that opioids should be prescribed carefully and patients monitored but they do seem to be very effective, safe drugs at low doses.
I am merely pointing out that methadone is the first choice opioid for most RLS experts in the USA.
Sorry for sounding like I am selling opoids. I know the dangers and I do understand why the medical establishment wants to guard and prevent abuse of them.
It is well known though and well documented that for RLS sufferers, low doses of certain opoids can and do relieve symptoms. And I’m all about relief. Relief so that my quality of life improves. Relief so that I can sleep. Before Methadone, I hadn’t slept well in literally years. So I’m so very thankful for it. And studies are showing that RLS sufferers are able to keep the dosage low long term. And that is my prayer and hope.
You do not need to apologise at all. I just feel that in the US because you have to pay for your medication that some GPs may give out drugs alittle more readily than here in the UK. Im the Uk if you can afford the pay privately then the world is your oyster however alot of drugs still will not be prescribed . I read stories on this site of people taking this drug and that but here its such a different story.
Yes i chose to stop taking morphine because i know it depresses the respiratory tract and the amount i was taking was ridiculous. So much so that it had no effect when i had my hysterectomy because my body was resistant to it and i never wanted to be in that situation again and be in pain , even tho i told the staff i was in pain . Plus now im suffering with RLS which im not so sure its caused my opoid withdrawal because i am still suffering.
So sorry to read this, Jools! Yes, the small chance of augmentation is indeed mentioned on the paper and usually gets overlooked or dismissed. I think it is Alyson(6?) the retired gp, who also reported augmentation on pregabalin. And I believed her.
I think te pregabalin helped you with sleep. Correct? I agree it will be wise to withdraw from it (slowly, of course). But do discuss with your doctor if thenpregabalin can be replaced by something else to assist the sleeping. I will refrain from suggestions, as I know nothing about that class of meds. Or may there be something from the arsenal of MS medicines that could be of help? Or, any chance of getting medical cannabis? I know you (occasionally?) take some of the illegal stuff.
It is too bad, as I understood you were doing relatively well with this oxycodon and pregabalin combination. I hope you get things sorted and ‘back to normal’ soon! Take care.
I'm very sorry Jools. I went on Pregabalin in January but very soon came to the conclusion that it was not working - the more I took, the worse the symptoms got, so I cut back and things were a bit better. But I was only on it for a few weeks before deciding, with my GP, to try Gabapentin instead. I have settled down on 500mg very well and was really happy that I rarely had any breakthrough - though I am still on 5mg Oxcodone and 60mg Codeine Phosphate. I tried but, try thought I did, I couldn't reduce those.
All was well until four nights ago when I woke with RLS. Since then each night the RLS has been worse - I was up four times with it last night, walking round and round the garden, up and down the country lane where I live for up to an hour each time - and I've been noticing the tension in my arms slightly returning as well as the jerking in my legs.
I don't think I'm augmenting. At least, it's nothing like I experienced on Ropinirole. However, I wonder if I have become tolerant of Gabapentin. So, though I don't talk to my GP until Tuesday, I have decided to try what Dr B suggested when I was on Pregabalin - come off it and increase the Oxycodone. My prescription says I can take 10mg, so that's fine!
I have to say I am disappointed that after such a short time I appear to have become tolerant of Gabapentin (at least, that's my opinion at the moment). Like you, I would be glad to hear how others have fared.
I wish you well as you try to sort out what is happening for you. It is at least good to share our experiences as it gives us ideas to work with.
Hi Rosie, I've just read your post with interest. I've only been on pregabalin for a fee months and had great success once it kicked in but now it seems that I'm up at least once, and the last two nights, four times with RL. I have been concerned for a week or so that I'm augmenting but was confused because I took an anti-nausea drug twice last weekend which I think upset the applecart. Now it's over a week since I took that med so thinking it's more likely the pregabalin??? I also had symptoms in the day several times yesterday which for me is a sign of augmentation.
If I can't be on this, I'm not sure what else I can try as I've tried most drugs that are legal here in Australia. I was on gabapentin for many years but withdrew from it earlier this year when I was augmenting on pramipexole, but I may also have been augmenting on gabapentin!
Good luck with your regime. I really hope it works and gives you a better control.
Well, shoot! I’m so sorry and hope to God you’re wrong about the Augmentation!
I can only offer my experience. As you know, my RLS spread to my right arm (and back and sometimes face) just prior to last year’s AGM. Ever since, I have been “on alert” that this could be a second Augmentation. At that time, I warned my medical team that I was preparing myself for things to go downhill really quickly (after all, that’s what happened with my first Augmentation). Several months later and I’m still waiting for that “quick downhill” to happen (don’t get me wrong; I’m thrilled that it hasn’t happened).
So...what I’m trying to say is that you could be fine. I got scared senseless once my arm started because 1. it was an eerily similar sign indicating the beginning of Hell and 2. I just assumed that, since the first time around began like a light switch being flipped on, this one would as well.
You are scared because you have a similar memory. Because the hurt of the first Augmentation is fresh in your mind, it is hard not to be scared. I mean, look at me. The good-part-of-a-year later and I still become a nervous-wreck every time I have a bad arm moment! My arm attacks are exhausting in and of themselves, not to mention the memories it bring up!
This is what Augmentation does to us. It scars us. But we can’t let it.
Thanks so much Jess. I agree- it may not be Augmentation- but perhaps a trigger has made all my symptoms worse & then I’m getting a little anxious thinking it is like the Ropinirole Augmentation.
I may reduce it anyway (slowly) and take my (illegal) cannabis oil to help with sleep as Lotte suggests.
Like Lotte, I think it was Alison (??cant remember the number) who augmented on pregabalin. From memory, I don’t think she tried a dopamine agonist either before or after the pregabalin.
Rls does go through phases (as you know) and this may be a blip though the spreading to the arms is not a great sign. My experience was that it is better to withdraw from pregabalin very slowly. I reduced by about 10% every 10 days or so. It took a while but when I reduced by greater quantities I had unpleasant symptoms and at the slow rate I didn’t suffer any withdrawals.
As to methadone, I really do wonder why it can be given to heroin addicts and not to anybody else. It seems like it is purely to do with the association with heroin which makes absolutely no logical sense. It makes me so angry.
Incidentally, for sleep I oscillate between cannabis taken as an edible and zopitan. Zopitan is more effective but GPs seem very reluctant to prescribe it long term.
It was Alison7 who augmented on pregabalin. Interestingly, when I was looking for her I found a post by you (8 months ago) where you said you suspected the weather conditions were causing your rls to play up ... I really hope that’s it and things settle down. Try not to get too sleep deprived. If necessary take extra opioid to cover symptoms so that you get some sleep. In my experience sleep deprivation makes everything worse.
Thanks so much ID. Interesting that the weather was a factor last time I had a bad spell. I have enough oxycontin to take the occasional extra pill in cases of need.
I will definitely reduce the pregabalin slowly- I remember Alyson saying she had difficulty with withdrawal symptoms. My GP always gives me about 10 zolpidem sleeping pills every 2 months to cover nights when I have trouble getting to sleep so I will use them occasionally in place of the pregabalin or the cannabis oil (with THC).
The RLS Foundation are studying Ecopipam as a possible way of negating Augmentation on dopamine agonists so that may prove a future possibility for us.
With this disease it's two steps forward, one step backwards!
Yes, I saw that research - the early indicators appear positive. I am reluctant to use the word 'hope' in relation to rls treatments but I do let my mind run to it when I am feeling particularly despairing. For me the only drugs that allow anything like a normal life are the dopamine agonists. I can get along when on opioids/kratom but it would be almost impossible to hold down a job. I've tried pregabalin twice now and it made no impact at all either time. I am lucky in that I seem to be more than usually resistent to augmentation. I am on a break from pramipexole at the moment and my symptoms are surprisingly mild so I clearly have avoided augmenting to date even though I think it's nearly 7 months since my last break.
I’m on pregabalin for neuropathy in my neck and shoulder and am told you will need to keep upping the dosage every so often as it will stop working so I keep it down to as low as I can because of side effects and I don’t want to keep upping it and get even worse side effects so maybe you need to up it a bit as if you only need to up it after two years that’s not to bad most people who take it for pain relief seem to have to up it every few months
Thanks Kingsley. I don’t want to increase the dose as it’s such a powerful drug but I hope that I might be able to ‘reset’ my receptors if I get off it slowly and then in a few months possibly try again by titrating up slowly.
I hope you can continue to get relief from your neuropathy without too many side effects.
I am speaking purely from observation - not scientific knowledge - but it seems to me that chasing rls symptoms with a drug by continually increasing the dose to deal with emerging symptoms does not end well. I think you are wise to try and keep the dose to the minimum and possibly if/when you find your symptoms are no longer responding to it, to take a break or at least reduce the dose rather than increase in the hope that the body resets its response and you kickstart a resumption of the positive response to the drug.
I have never personally used pregabalin, but my daughter did for pain relief due to Ehlers Danlos hyper mobility. She put on a lot of weight and, I think, felt depressed. Since coming off it (gradually as she gets withdrawal symptoms otherwise) she has lost a lot of weight and feels a lot better. So I would avoid it myself.
Just to say I'm sorry to hear about this and offer my sympathy. I recognise that you must have suffered much over years because of RLS and yet have "been there" for other sufferers.
I hope it is just a "bad patch" you're going through and quickly find some ease.
The bad weather may well be a factor, I am very sensitive to light levels and it does has a significant impact on me.
I have no experience of this drug just wanted to offer empathy and support. I periodically get it in my arms and it goes away again until the next time.Fingers crossed it's a bad patch. I agree about campaigning for methadone. I would get involved. Xxxx
Hi Jumpy- I get mine from a family friend who makes it from his garden but will only give to friends suffering from cancer or other medical conditions. If I could help I absolutely would but he, for obvious reasons, will only make small amounts for friends.
Hopefully the law here will change. Cannabis oil with THC was made legal for severe epilepsy and MS a few months ago but not a single person with MS has been prescribed it! I know because I have MS and the MS Society is trying to ensure we get the cannabis oil but GPs are not prescribing it and the Government seems to have other issues to concentrate on at the moment. It’s infuriating.
All this is very interesting. I am sorry you are struggling with this. I have not had to concern myself with augmentation but reading the various comments realise it may be round the corner for me. I keep saying that my drug cocktail is working but I know leg movement is going on. Augmentation and how to deal with it are topics that will start getting much more attention from me! I pass on my very best wishes.
Hi Jools sorry you are having a rough time right now, hope you can sort it out soon so you can get back on track. I have been trying CDB oil without the THC recently i KNOW there have been a few who have had success with it. BUT, i had to stop before i got very far with it, as it caused me really bad stomach upsets, its the carrier oil they use apparently and i have tried a few different ones all give the same result.
Thanks Elisse. I’m sorry to hear about the cannabis oil. I know you are very sensitive to meds but I am sorry you have reacted badly. I used to use CBD brothers for cannabis oil ( the legal type) & they were very helpful. Have you tried them? They may be able to advise on whether any of their products are less likely to produce side effects. They answer emails quite quickly.
Not tried them , might email them and see what they say. I have been using Simply CBD oil a good company and not expensive.
Hi Alison here, I’m the retired dr who thought she’d augmented on Pregabalin, different areas of body & longer & longer overnight & earlier in the evening. Difficult to know if natural worsening or not. Now off it it’s less likely in other areas but the rls has remained awful, frequent wakenings & often doesn’t wear off till say 10 or 11am.
I have a feeling the Pregabalin made it permanently worse. Certainly I think my rls is way up at the most severe end.
I rarely take anything now, occasional codeine as I’m scared of the effects of all the medicines now but it’s therefore pretty intolerable.
I do however have peripheral neuropathy as well as my long-standing inherited version so suspect I am attacked my both types at once
Thanks for responding Alison. I am so sorry you are having such a tough time with RLS.
I understand the fear of trying any new meds- when you’ve been on the usual suspects and they turn on you, it’s really difficult to consider anything else.
I am under Prof Choudhuri at King’s College Londonand was horrified when his registrar suggested the Neupro patch after I had been through horrendous Augmentation and withdrawal from Ropinirole. I asked about iron infusions ( No we don’t consider that) and Methadone ( No we don’t consider that). I feel very let down by the English ‘experts’ who are decades behind current thinking in the USA ( amongst experts).
I suggest that we campaign together for Methadone. Our US members seem to have complete relief from RLS with very few adverse effects.
Even with meds, I get RLS every single day( or night).
Hmmm wonder IF the UK did prescribe Methadone it would give me side effects. Considering every med i have tried for RLS, does. But would love to find out whether it would, but no chance. I cant remember the last time i got a decent nights sleep, or didnt suffer with side effects all day. Wish we had real RLS experts this side of the pond.
Hi Joolsg, I was taking Ropinerole quite a few yrs back, then Gabapentin, now on oxycodone 3 1/2yrs and Pregabalin 1yr and have no problems. Hope yours settle down very soon. X
It was a rough spell. Haven’t had it since. This disease is so unpredictable. How about you? I know you are still on a low dose of pramipexole. Is it keeping the RLS under control?
I don't know if I should say yes or no. Its been touch and go for me over the last few weeks. Still fighting the battle to get any neurologist to listen to me. Hopefully, the new year brings some better days for all of us and some magic medicine would be nice too.
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