Hello All, many thanks for your contributions to this fantastic site and answers I have had to personal questions.
Having recently joined the ranks of RLS sufferers I have been researching, experimenting, trying and testing ways to control RLS symptoms and sleep issues. I've learned a lot but still feel I am at the stage of "asking dumb questions" when I compare myself to most of the people on this site. I hope you don't mind me continuing in that vein.
Like most people, when I tried a DA (Pramipexole), I got immediate relief. Only to quickly find out about the risk of augmentation and the horrible withdrawal process at which point I stopped taking it. Before I completely shelve this drug as not part of my solution I was hoping I could get some feedback on a number of questions??
Is it true to say that augmentation usually happens after a period usually measured in years and /or a history of increasing dosage?
Have there been any cases of augmentation happening in months and/or at low dosages?
If dosages were kept low and regular breaks from the drug were taken could augmentation and potential damage to neural pathways be avoided?
Is it safe/feasible to take a low dose DA on an as needed basis to help with early symptoms or used to help in opioid withdrawal?
Regards Covenant1962
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Covenant1962
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People tend to vary in their opinion, so do read the many many more posts about difficult symptoms which often indicate augmentation on a DA.
Personally, I started out on a DA (ropinirole), found it initially effective at 0.125mg, but already had to increase when it began to fail somewhat after about three weeks of use. I didn't increase until after 5-6 weeks. And in small steps (first to and then by 0.25mg, the lowest available dose in The Netherlands). When I came to 0.75mg, still a fairly low dose, my neurologist (prof at uni hospital) said I could safely increase to at least 8mg. And as I read the information leaflets of medicines, I knew that wasn't correct; that is the maximum for Parkinsons. Anyway, I remained at 0.75mg, slept badly and at one of those nights stumbled upon this site and learned quickly about augmentation. Months later, when I finally had had a sleep study, I was switched to other medicines. It took a long journey. Since about half a year I have been taking buprenorphine (Temgesic 0.2mg) successfully. Only some mild RLS in late afternoon and early evening, but when my evening dose of Temgesic kicks in I sleep well and uninterruptedly by RLS symptoms until the next morning. The only downside is fatigue and brain fog.
Now back to your question. Personally I think that DAs can be a valid and very effective option. They work quickly (=same day) and can be taken on an as needed basis. And they are very effective initially. For many people (the ones we don't 'see' on this forum) they can remain effective on te same dose for a very long time. Even when you read the horrible augmentation and subsequent withdrawal stories, you will see that quite a few people had many good years on them. I think it is possible that the long term negative effects, such as great difficulty to get RLS under control after augmentation, is more owing to the faulty reaction to the first signs of augmentation (and I surmise it begin with loss of effectiveness): doctors keep increasing the dose of the DA, even to far beyond the maximum advised, and also spreading it over the day.
I have not yet lade ly mind up about what next when the first signs of augmentation appear. Whether drug holidays suffice (but there are stories of shortening intervals between the drug holidays, see Cees Jongenelen's story at EARLS.eu), or whether only reducing (thus not completing stopping) the DA and adding in an alpha2delta ligand (gabapentin or pregabalin) or an opioid would be better, or stopping the DA completely, never to return.
Long story short: if you consider to continue to take a DA, do not increase te dose when it starts becoming less effective, symptoms start to occur on other parts of the day or the body. But rather: reduce. What to do after, I don't know.
Even when you follow this, the RLS symptoms may prove difficult to treat and control - see my personal story.
Disclaimer: This is my personal view. I am an RLS patient, I have read many, mostly scientific papers to inform myself, I am a 'dr' (=PhD in science), but not a medical one.
Thanks LotteM lots to contemplate and consider. I am sure I will have more questions once i have digested the info provided. Btw how do I access Cees Jongenelen's story at EARLS.eu
I am quite sure of it. It is not clear in his story whether he takes any medicine at all during his drug holidays. Most of us know how torturous that can be.
If your RLS is physical during the day, it does not fit the discription of RLS. Look up Servere Fragmentation Myoclonus. Sleep specialist refuse to discribe and treat day time myoclonus events. Stupid but true
When symptoms of RLS appear during the day for somebody with a confirmed diagnosis of RLS who is taking a DA then the most likely cause is augmentation.
You are partly right. I was mis-diagnosed from the start. I had day and night time jerks. The problem then as now, No one will give physical jerks (while awake) a name. Now Manervca, we are talking about orange and apples. They are seperate. One does not fit sleep diagnosis criteria and it has nothing to do with augmentation. The rare disorders and multiple myoclonus categories need to be a seperate field of studies. The reason the sleep specialist do not want to deal with awakeness jerks is because it is out of their field and they sweep it under the rug. Will Mayo clinic open up a new field of studies? I intend to lobby. I have too much evidence.
Partly right yes, "augmentation", at least the augmentation in this context, possibly occurs with RLS when somebody takes a DA in the longer term.
Hence if somebody DOES have RLS and has taken a DA for it and THEN suffers jerks during the day it is PROBABLY augmentation.
That's not a 100% probability.
If somebody does NOT have RLS or has RLS but has never taken a DA for it, then starts with daytime jerking, then it is PROBABLY NOT augmentation.
That's not a 100% probability either.
There are variations on this. Some people with RLS do have daytime symptoms without ever having taken a DA.
Some people have PLMD when awake, rare, but possible. I'm not taking a DA, I don't have augmentation, but I sometimes jerk in the daytime due to RLS.
If somebody writes a post in this forum, i.e. the RLS forum, I make the assumption that they have, or think they have RLS.
If they write they suffer involuntary movements during the day then I would tend to interpret that in the context of RLS.
However, I would try and get more information, to try to confirm that they DO have RLS and if so what medications they're taking, what dose, for how long and so on. I'd also try and figure out what the patterns of their symptoms are.
If all I find out fits the criteria for augmentation and nothing else, I'd say the jerking is POSSIBLY augmentation.
Sometimes, I might even say I don't think you have RLS, it MAY be something else.
I know practically nothing about myoclonus so I would probably never think of that.
If you're concerned about the lack of studies into the daytime jerk phenomenon and you have some evidence, please do lobby some institution. That would be very good of you.
I was told day one, I had RLS. I had day time jerks starting after I had hypercalcimia. The docs did not differentiate Physical or night time dream of movement. I may try to get Stanford U. interested. They discovered 20 brain barrier proteins and were doing altheimers studies.
I is confusing to all that have day time jerks with out a good explanation. RLS is a nite time diagnosis only.( all RLS , Hypongoglic jerks, PLMD are a form of clonus. When multple jerks happen in the day time, there are at least 5-10 classifications depending on including rare Disorders. I have done my home work None of the Myoclonic movements fully explain laefe physical day time jerks caused by solulance and lasring over 30 minutes, unless you get up and walk. That is the paradox. NONE DISCRIBE IT TO MY KNOWLEDGE and I have a strong medical back grown. I am in suspect of Bain barrier chemistry. NO ONE---LISTEN to me.NO ONE HAS appied recent discoveries to the clonic area, inclding parkinsons and Ataxia, and intention tremmors. Augmentation explains increse sysptoms.But I am talking apples and not oranges. Because I repect you, I will send you the letter, when I write it. I may reference you. In that case, I will let you read the letter before I e.Mail it. Sorry for all the mispelling. Wife is calling Ha!
Lotte has given a very comprehensive answer.It's all very much down to personal differences. What works for me, may not work for you.
In general, I would be inclined to try a DA for as long as it is effective. When it stops being effective that's when you stop taking it. Some people might take it for 4 or 5 days a week, and nothing the other 2 days in the hopes of putting off augmentation.
Other people have found a low dose effective for over 10 years.
You may have some other form of myoclonus if you jerk in the day, wide awake
An excellent answer from Lotte.
I'll try to answer your questions literally.
There is evidence that the augmentation rate for pramipexole at a dose of 0.5mg is 7% year on year. That means 7% get it in their first of taking it, another 7% in the second year and so on, hence 70% in 10 years.
This is a statistic. There is no way of predicting when any individual will get it.
The risk of taking 0.25mg is less.
I can't recall actual figures, but I believe the risk for ropinirole is slightly less and for rotigotine, the least. I'd have to check this.
There are some authoritative sources that say that augmentation CAN occur even at lower doses. Again there's predicting for an individual.
The UK NICE 2020), recommend that doses be kept as low as possible. However it also has to be effective. Since one of the complications of DAs is loss of efficacy, when a lower dose becomes ineffective it causes a dilemma. As Lotte says anecdotally it seems some doctors deal with this by inceasing the dose.
However, as NICE also states, augmentation is more likely to occur after an increase.
I suppose it is possible to avoid complications of DAs for some time.
However, there's no way of predicting how it would work in an individual case.
It's purely my opinion but I see no point in taking any risks with DAs when there alternatives available with apparently less risks. It seems logical to me that alternatives be tried first before resorting to DAs. However, it is a personal choice.
I've never heard of using pramipexole to help with opioid withdrawals, it's usually the other way round!
Thanks Manerva, there aren’t any easy solutions for RLS. I’m going to give this some more thought particularly what you said about less riskier solutions. I am assuming what you mean is a Gabapentinoid.?
I came across a YouTube video in which a guy described using pramipexole to quiet restless legs caused by Tramadol withdrawal.
Thanks Manerva, actually as I heard it the Tramadol is not replaced by the pramipexole. The DA is used only for a few nights to deal with restless legs from Tramadol withdrawal and to help sleep.Tramadol as you know is a synthetic opioid with dual outcomes as an analgesic and a SSRI. It’s described as a weak opioid but the euphoria it also produces makes it harder to come off I think.
I came off 300mg of Tramadol over a month and went onto Buprenorphine patch. Dr tried to cold Turkey me off Tramadol, MST and co codymol at same time and said patch would cope! Coped with coming off 100mg of MST easily but not the Tramadol. Went back and insisted he gave me a months taper as recommended time for dose and time I was on it was three months. I don’t bother with GP anymore. Find hospital pain team and knowledgable chemist are great combo. Just need that egit to put his scrawl on repeat prescriptions. I have fybromygelia and spine problems as well. Life has changed 100% on Buprenorphine patch, wish I hadn’t lost the last ten years on opiates. This is a synthetic opiate without side effects. For me personally it is nothing short of a miracle. It has given me my life back at 53. Seriously I should be a poster boy for this stuff! GP cannot initiate treatment, hospital has too, even then he didn’t want to run with it but is legally obliged to thank goodness. If you knew me you would be amazed!
Paganpatrick, may I ask you the strength of your buprenorphine patch? And how it lasts/ is supposed to last? I am keeping a list of people that take buprenorphine for their RLS, their doses and experiences.
Certainly Lotte but you should be aware I have comorbid conditions of Fybromygelia, spinal issues in neck and lumbar areas plus peripheral neuropathy on top of RLS. So my strength of patch will not reflect what would be an appropriate does for RLS alone, it would without doubt be very much lower so I may make your list a bit unrepresentative! So with that Caveat I’m on a 35 patch. Hope that helps. I presume most RLS sufferers would be on a 2 or 5 patch. It would be interesting to know should you wish to share please.
Thank you Patrick. Sorry to hear you have so many other ailments. But very happy that the buprenorphine works for you. I hope, as for all currently effective medicines, that they last. I'll make a note about the comorbidities (as I believe it is called). Apart from the combination with neuropathy, which is a well known one, it strikes me that many people with 'difficult' RLS also have fibromyalgia. I often wonder that is a by-effect of the RLS, especially badly controlled RLS. I found it exhaustive and have since developed deep aches, but exclusively in my legs. Fibro is more than that, but still...
Sorry omitted to say how often I change my patch! I change it every Tuesday and Saturday which are my soak in magnesium salts bath nights. I find the patches luckily don’t affect my skin but the glue remnants catch the dirt and have to be scrubbed off. So that’s every 3.5 days. The manufacturer instructions say every four days. But there is no way my flaky memory would follow that. Tue and Sat works well and pain consultant is happy with that. For those who have sensitive skin (which many do) I believe Buprenorphine is available in a tincture form, putting drops under the tongue.
Please be aware...Tramadol is not''''is not'''a good drug for RLS. Quote me. As a physical Therapist,, I got off the heavey opiates. I have servere Stenosis of the low back and neck with a hold on any thing further than a light pain meds. So, I have low dose. I, however find it helpful to facilitate the ropininol. This is a stronger med in the parkinson's group. Traminole is for pain period. I take an anti-seizure nerve healing med at nite called gabipintine. It also has a sleeping quality that would be better than tramadol, so check with you doc. It boils down to what combination you use, Tramadol is an opiate and gabapintine is not. Warning. When you forget and double up or use it other than at day or nite, augmentation can occur. Be your own care giver but study, google, understand the questions to ask your doc. If he is not up to snuff, seek a second opinion and third . RLS in a parrot syndrome. Everyone has the same teacher 10 years ago. New movement neurologists specializing in Rare clonus conditions may be needed.
I would agree with everything said so far. There is evidence that some of the other treatments - such as iron infusion and anti-convulsants (gabapentin/pregabalin) - are less effective for people who have taken DAs previously so it would seem sensible to try those options first and resort to a DA subsequently, especially as the treatment options for RLS are relatively limited.
If taking a DA it is important to keep serum ferritin high. There is evidence to suggest a link between onset of augmentation and low serum ferritin.
I would agree with all the answers that advise not increasing the initially effective dose of DA. The worst impact of the DAs seems to arise when sufferers attempt to chase their worsening symptoms with a higher dose of the drug.
Hi there, I have been suffering from RLS for nearly 20 years and have taken it all and seen it all. I was on Pramipexole for many years and sleeping reasonably well but it was not entirely satisfactory and I was often restless sometimes during the day and evening. It was after increasing the dose that I realised augmentation had set in. Since then I tried Ropinerole (not good for me) and Rotigotine (neupropatch) which helped for a few years and now on 0.26 mg of Prolonged Release Mirapex (a form of 24 hours slow release Pramipexole) which has been helping me now for more than a year. I do not increase the dose. However, I take it in combination with 0.5 mg of Clonazepam (prescribed by my Neurologist for helping to sleep) and something I stumbled upon after an operation which is 2 co-dydramol (10/500). 2 tablets together contain only 20 mg of Codeine (far less in terms of morphine equivalence than Buprenorphine or OxyContin).(I beat the constipation caused by the Codeine with soft prunes and 1 extra strength Senokot). Because co-dydramol contains also paracetamol of which you can only take so much, there is less danger of increasing the dose. With the PR Mirapexin I have no RLS during the day. It has started recently playing up in the evening but nights are normally good. So my way is a combination of a DA with Co-dydramol and Clonazepam. Every one is different and sadly there is still no one way of treating the wretched condition. I forget to say that I watch my food triggers closely. I try to avoid grapes, raisins, apples, banana’s, strawberries, melon, margarine, mayonaise, garlic and artificial sweeteners. Being distracted really helps so I play bridge or scrabble on my phone. Good luck!
Thanks Felicity21, hope you don’t mind me asking a few questions?You say you were on pramipexole for years. How did you get off it and what was your experience of augmentation? Did you ever try or consider taking Gabapentin or pregabalin?
Yes I forgot to say I slowly reduced the Prami and went on Gabapentin for a while which was a disaster. It caused deterioration of my eyesight. It took me 3 months of sleepless nights before Neurologist prescribed the PR Mirapex. My earlier augmentation occurred after my GP increased the Prami. Better to decrease than to increase. And you can switch DA’s. All not easy. Trial and error. It is a horrible condition. I myself find the combi DA/painkiller helps best. Good luck.
The comments are excellent but I also want to mention my biggest concern, D.A. drugs can severely alter one's personality and a warning label should be on the package. It can cause shopping, gambling and aggressive behavior. The patient should be warned and significant others should be notified. Because the patient will not notice. In my case, I became a mean self justified aggressive narcissist. I am not the only one, pick any D.A. drug and google "D.A. lawsuits". "Ropinerole Lawsuits", "Mirapex Lawsuits". The results are horrific and the pharmaceutical companies are paying 7 figure damages. Good luck getting a good lawyer from a large firm.
Yep. My mom gambled 100s of thousands away on Mirapex. I got her into the class action suit and she did recieve a monetary judgment. My Doctor won't even consider letting me take this with having so many similarities with my mom.
Like you, I don’t have a lot of experience or knowledge. I’ve had very minor RLS for many years but sought more aggressive treatment with the onset of PLMS that was disrupting/preventing any actual sleep. My neurologist prescribed Mirapex and warned me of the compulsive behaviors to watch for (specifically, a desire for more sex, spending money, and overeating). I had a weird reaction to the medicine both times I tried to take it. It did stop all the strange neurological symptoms but it gave me insomnia and a weird inability to function, in general. Anyway, my bad reaction is what led me to this site. When I finally went in for a follow-up appointment last week and expressed my anger/confusion at what I felt was his irresponsibility in prescribing a dopamine agonist when there were many other potential options to try first, he took offense. He thoughtfully and patiently countered all my arguments (which are based on what I have tried to learn from my own research, including info from this site). Please keep in mind, I am no expert and my interpretation of what I’m reading and learning is likely inaccurate and definitely incomplete. But my appointment with him left me with the overall impression that Mirapex is a very solid option for treating RLS and/or PLMD and not everyone has the complications we read about in this online forum. He said he has treated thousands of people, most of whom find great relief and success in managing their symptoms with mirapex. I genuinely don’t know what to believe, but I will say he is a very kind, compassionate, thoughtful doctor, who is hugely popular in the state. BUT he is not listed as a recommended provider by the RLS site...so take his advice with a grain of salt, I guess. One thing is clear- there is no simple answer and we all must endure a series of trials and errors to find what works best for us as individuals. Best of luck to you on your journey.
Hi, sorry to hear about your neurologist. It's great that he listened to you and showed compassion.
However, according to the EVIDENCE despite his personal EXPERIENCE, which is no match for objective research, he is wrong! He needs to get up to date, his experience is outdated.
No need to say anything in your own words, and better still do NOT quote anything written in this forum.
Hi,As already said here...lots of good info based on both research and first hand experience.
Ive had yrs of trying pramipexole at increasing doses resulting in augmentation. After aprox 1 yr, switched to Gabapentin, switch was torture for 3 weeks + I was unable to tolerate the dose needed to gain control of RLS, switched to 60mg codeine with loss of efficacy after aprox 4 months.
I now manage my RLS with a combination of low dose everything. x1 lowest dose Prami, 300mg Gaba, 30mg Codeine..all on an eve before bed. I manage symptoms late aftn + eve by keeping moving. So far working well. My GP not happy but humours me as less hassel for him than reading all the literature I send him sourced from here.
I'm sure many would disagree with my regime, after all doses are sub therapeutic. But it works for me + I can tolerate effects next morning + manage a job that requires a clear head.
We're all different and this horrible disease has no one size fits all medication.
I'd advise, read all you can, keep asking questions (yours arnt dumb by the way)
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