Just found this site and I’m so grateful! I desperately needed information and understanding! I’ve suffered with RLS for many years but it grew much worse about two years ago to the point of needing medication. Unfortunately, this coincided with a terrible time in my personal life that caused me to need an antidepressant. My GP prescribed Zoloft/sertraline for anxiety/depression and upon my request prescribed pramipexole (my twin sister and father both have severe RLS and my twin had told me pramipexole was working for her). After a year and a half of working perfectly, it suddenly stopped working. My GP switched me to ropinerole last week and 1.5 mg seems to be working well at night, but I’m still struggling even to drive during the afternoon and early evening before I take it. But now (from reading on this site) I realized I might be going through augmentation and withdrawal from pramipexole. Any advice on what to do now? Should I stay on the ropinerole as long as I can, but not increase the dose? Or should I get off of it immediately and try some thing else? My GP has never checked my blood iron levels, but at my request checked my ferritin levels snd they were “normal”. I’m realizing she knows nothing about RLS. What should I do now after just one week on ropinerol? Thanks for the help!
Need RLS treatment advice : Just found... - Restless Legs Syn...
Need RLS treatment advice
Please check out almost any of Manerva replies to the multitudes in your situation.
Ask for actual numbers for ferritin. It has to be above 100. GP will tell you it's normal if it's above 15 but that's way too low for RLS.All antidepressants trigger or worsen RLS ( except trazodone or wellbutrin) so bear that in mind. If anxiety is the main symptom, consider a benzo like diazepam or clonazepam as they also help RLS.
Read the pinned post in augmentation and it does sound as if you are suffering from it if the RLS is bad in the afternoons.
However, increase your serum ferritin first.
I attach the algorithm for augmentation.
If you do decide to come off Pramipexole/Ropinirole please don't stop cold turkey . The withdrawal is horrendous. I also attach a sheet from Johns Hopkins of what to expect during withdrawal. As you can see, you need 2 weeks clear of work as you'll get zero sleep and constant RLS 24/7.
Reduce Ropinirole by0.25mg every 2 weeks. The slower the better.
Pregabalin is a better first choice med and that could be your next option. You could build up slowly to 150mg at night while reducing the dopamine agonists nut you might also need an opioid like Tramadol or Oxycontin to deal with bad withdrawal symptoms.
It's a bit confusing, I guess.
When a dopamine agonist (DA) e.g. stops working, this is called "loss of efficacy". Although this may be the precursor of augmentation, augmentation is different. With augmentation -
Symptoms become more intense
Symptoms happen earlier in the day
Symptoms spread from the legs to other parts of the body.
Symptoms happen quicker.
Whether you suffer simply a loss of efficacy or whether you suffer augmentation it is NOT recommended to increase the dose of the DA.
Withdrawal effects only occur when the dose of a DA is reduced. Hence if you were suffering augmentation and then you reduced the dose, symptoms would probably get even worse! (Temporarily).
As you say your doctor "switched" you from pramipexole to ropinirole I'm guessing this means you took a last dose of pramipexole (P) one night, (went cold turkey), then took a 1.5mg dose of ropinirole (R) the next. If that's wrong let me know.
It IS OK to switch from one DA (P) to another (R) like this, but it must be to an "equivalent" dose. That means a dose of R that has the same effect as the dose of P.
If 1.5mg R is a greater equivalence than the dose of P you were taking, then really you have increased the dose of DA. NOT recommended.
If 1.5mg R is a lesser equivalence than the dose of P, then really you have reduced the dose and could be suffering withdrawal effects.
Clear as mud? What dose of P were you taking?
In any event, loss of efficacy or augmentation, especially the latter, it is not a good idea to switch from one DA to another.
Frying pan to fire.
It's recomnended to switch to another NON-DA medicine.
In which case you would have to Slowly wean off the R to avoid major withdrawal effects. As Jools says, do not go cold turkey.
Please note : DAs are NOT now recomnended as the first treatment for RLS.
See this link
pubmed.ncbi.nlm.nih.gov/274...
Your doctor is apparently lacking a sufficient knowledge of how to manage RLS.
Apart from medicines they have apparently missed two important things.
The first is that you would benefit from your ferritin level being above 100 as Jools says. Ideally, at least 200. If it is less than 75 you may benefit from an oral iron supllement. If it's over 75 but under 100 an IV iron infusion could benefit you.
See this link
sciencedirect.com/science/a...
The other thing missed is that are a LOT of things can make RLS worse.
The main things are medictions, but it could be diet, inflammation or other health conditions. Too many for me to list here at this time.
Last
The risk of suffering augmentation from taking 0.5mg pramipexole is 7% in the first year, 70% within 10 years and almost inevitable in 15. You can't predict for any individual.
People taking Pramipexole who haven't suffered Impulse Control Disorder (another complication) or augmentation or have never heard of it tend to think pramipexole is the best for RLS. In fact, apart from levodopa, it's the worst!
Perhaps you could warn your sister. If you wish you might also ask her to stop recommending it to people.
Manerva Please say if symptoms spreading are actual jerks or thinkinking about jerks.
It could be a worsening of the urge to move, which is what I think you mean by "thinking about jerks".
However, it can progress to actual involuntary movements, jerking. You cannot stop this, you can only delay it.
This was what I experienced during and even before augmentation when I forgot to take the pramipexole.
Even now, when I do experience symptoms, it is jerking.
That is one thing, the other is that symptoms also spread to other parts of the body, whether that's just the urge to move OR jerking.
In fact, even now I still get jerking in my right shoulder and arm, then it spreads downwards.
My theory is the augmentation caused some permanent damage!
It's not really been a problem, it doesn't happen often and it doesn't last long.
Thank you for your answer. I am beginning to think that an orange may bring about an apple syndome. Augmentation may lead into a seperate brain barrier condiltions, Myaclonic disfunction spelled out by John Hopkins gives some crediance to this hyposist (sp). Problem is, you and I know too much coming from different ends. I believe the sleep people just want to limit discussion to night time only.
I confess I know very little about myoclonus as I've never suffered from it.
I appreciate you may know more about it than me therefore.
From doing a brief search for information I see that myoclonus is described as a brief, involuntary, irregular (lacking rhythm) twitching of a muscle or a group of muscles.
Many different neurological disorders can cause myoclonus; therefore, neurologists consider it a symptom of disease rather than a specific diagnosis.
However, the "jerking", that I and other RLS sufferers experience doesn't fit this description. My experience of jerking is that it can last from minutes to hours and is rhythmical.
The idea that any symptom that occurs in daytime cannot be due to RLS and therefore must be something else, doesn't hold true. Augmentation of RLS is still RLS not a separate condition. Only people with RLS get it.
Some people with RLS symptoms, get them in the daytime anyway, without suffering augmentation and without even taking a dopaminergic agent.
I would say if that if somebody with RLS has ALSO been diagnosed as having a myoclonus that they may have two separate conditions. BUT you can't just assume that if somebody who has RLS has jerking during the day, automatically has myoclonus.
As for sleep specialists, who do by defiinition specialise in sleep disorders. RLS is actually classed as a "sleep related" disorder and genearally speaking RLS occurs when AWAKE. In addition most people with RLS also suffer PLMS which shares the same causes and treatment and occurs when ASLEEP.
However, most peoplel diagnsoed with RLS who see a specialist see a neurolgist, not a sleep specialist. A sleep specialist is bettr if the person also siffers PLMS or sleep apnoea.
Aplogies for saying this, but it appears you are trying to twist the facts around to fit your theaory rather than twist your theory around to fit the facts.
You are correct!!!!in Your assumptions. My hang up is simple. Day time jerks are hypngogic and start most of the time after a meal when digestion leads to a presleep state.(NOT FATIQUE) as has been the only day time study. I want a SPECIFIC DAY TIME) category and I want research that backs up this, I never had the typical RLS or PLMD. I always had awakeness jerking. So far, you are the only one to own up to to night time symptoms accellerated in the day to visible jerking. WHY ARE WE ALONE IN this regard Surely Earl, John Hopkins, Mayo Clinic can approach my concerns scientificaslly. They have not . It IS NOT A SIMPLE MATTER OF AUGMENTATION> So, my position is simple no one knows and researchers have avoided the issue.....
Sorry, I'm getting confused now.
I thought you were saying you get myoclonic jerks during the day. Now you say you get hypnagogic jerks during the day when you're falling asleep.
It's true that hypnagogic jerks can occur whenever you are falling asleep day or night. It's not time of day that's the cause of these, it's the fact you're falling asleep.
These jerks are a type of myoclonus. i.e. a single jerk, no repetition, no rhythm.
Are you saying that IN ADDITION to hypnagogic jerks you also get other jerks, ie. when you're not falling asleep. i.e. a single unrepeated jerk?
Just to repeat, one of the symptoms of my RLS is twitching. There's no doubt of this.
This is NOT myoclonus, it is not singular, it is repetitive and rhythmical.
When I suffered augmentation, this got worse and it happened during the day. This to me proved that this experience is not any kind of myoclonus.
I do experience a hypnagogic jerk now and again (single, unrepeated.) Almost everybody gets these at some time RLS or not. If I'm falling asleep during the day, I can get them then too.
But if I get myolonic jerks when I'm falling asleep during the day, I can't think of any reason for inventing a new kind of myoclonus, it seems to me, it's just a normal hypnagogic jerk.
If I get the repeated, rhythmic jerking, during the day. then it's just my normal RLS symptom. I don't have augmentation, but I do have the luxury of being able to have a nap during the day. Needed because my circadian rhythms are pretty screwed up.
However, if as an individual , you get single unrepeated jerks during the day AS WELL AS hypnagogic jerks and feel they need to be investigated then go for it.
I hope that makes sense.
Great reply Manerva your knowledge and guidance is invaluable. This is such a complicated subject and danger seems to lurk round every corner. Picking up on this can you confirm that a 1mg rotigotine patch is an equivalent dosage to 0.25- 0.375mg of pramipexole and if you moved from P to R you would be increasing your risk of augmentation by an equivalent factor? Sorry to bother you with this sort of question I just need to be informed when I talk to medical professionals and I can’t think of anywhere else to turn.
It does appear as if the ratio between rotigotine to pramioexole is 4 to 1.
Therefore, as you say 0.25mg is equivalent to about 1 mg rotigotine. 1mg is 4 times 0.25mg.
Hence switching from 1mg R to 0.25mg P is no changen so shouldn't influence the risk of augmentation one way or the other.
However, it's not quite that simple, firstly because there's no predicting an individual's chances of augmentation. Secondly P carries a higher risk of augmentation to R. One of the reasons being P is immediate release and R is extended release. Hence P has a greater risk than an equivalent dose of R.
Note that in this reply P = pramipexole and R = rotigotine.
BUT in my reply to vivace, R referred to ropinirole, not rotigotine. This is a different matter.
Thanks again Manerva
Pramipexole is not a drug to be just stopped, you need weaning of it slowly, then build up on the ropinerole. I would also say your RLS sounds genetic. My mother had it I have it my 2 sons also have it. rls-uk.org this a brilliant site will give you all information, about medication & side effects. Also about rls in general & augmentation. There is also a section for gp's, not that they are usually interested, but worth a try. I am on pramipexole pregablin & codiene, this is prescribed by my nurologist who has a special interest in RLS. I hope this information helps you.
That's so interesting My Doctor told me I must reduce my Pramipexole to one per day then have two days with nothing before I can start taking the Pregabalin . I found this impossible. You take both drugs? Could I do a cross over whilst switching to Pregabalin? .....I really want to switch. Thanks.
See my reply to shaft1952
However your case is different.
Shaft wrote about switching from.pramipexole to ropinirole, both dopamine agonists.
Switching from pramipexole to pregabalin however is completely different as pregabalin is NOT a dopamine agonist.
It is therefore important to wean slowly off the pramipexole to avoid severe withdrawal effects.
The withdrawal schedule your doctor has given you is much too fast in which case you may experience severe wthdrawal effects. A better schedule would be to reduce the dose by no more than half a 0.125mg tablet. Then stay on that dose for at least two weeks before reducing again. It's recommended that withdrawal from a dopamine agonist should be done over at least 3 months!
The other thing is, because pramipexole and pregabalin are completely different you can take them at the same time. You do not need to wait until you've stopped the pramipexole before starting the pregabalin.
You should start it at least 4 weeks before you stop the pramipexole, as it can take that long to work.
Since pramipexole is a dopamine agonist and so is ropinirole, there is no need to wean off one and then build up the other. As long as you take equivalent doses then you can stop one cold turkey one night and start on the equivalent dose of the other the next night.
This avoids withdrawal effects.
0.5mg pramipexole = 2mg ropinirole.
Where is the GPs section?
I have been taking Pramepexole , the lowest dose, 3 tabs per day for 2 years now and have recently been prescribed codeine as well . I was advised to switch to Pregabalin but was told I must stop taking the Pramipexole before I can start on it. I found this impossible so have continued with the Pramipexole. I have augmentation but the codeine 45mg early evening has proved very helpful. I see that one of your replys below is taking Pram and Pregab at the same time........I was told that I couldn't do that. All very confusing. My rls is inherited. I'm 74, have had it from childhood and it has got worse over the years. I also take a Zoplpidem sleeping tablet each night! Considering all this I'm very active and don't have any groggy feelings the next day. You have my sympathy, it's a vile thing to have. Take whatever works for you but I have been advised that Pregabalin is the best drug. Best wishes.
If you have the urge to move at night , you have RLS an orange. If you jerk awake in the day time, you have Fractured Myoclonic syndrome a lemon. You can not augment one from the other. .5 Ropinrole works well combined with USA gell capsules gabipentine( antiseizure. quiting nerve and shinkles) UK tabs of gabipentine1200 tabs are different and our over seas friends use 2 for 2400mg with RLS. Pease conform with doc. BUT< BUT< BE YOUR OWN CARE GIVER. Too many docs are parrots
Ask to see a consultant. I have been on pramipexole for years but developed augumentation. My consultant put me on pramipexole but changed the type and dose. I am on 0.52mg Prolonged-release tablets, one a night, 2 codeine phosphate 30mg a night and 2 Clonazepam 0.5mg tablets at night. This is the best for now. I also take citalopram 20mg tablet in the morning. I do take other tablets for other things but not for RLS. Hope some of this helps but you need to see a sympathetic consultant.
Sorry to possibly disillusion you.
Prolonged release pramipexole is still pramipexole and can cause augmentation.
The best treatment for augmentation is to STOP all DAs.
Did the consultant discuss iron therapy with you?
Did the consultant discuss avoiding exacerbating factors with you?
These are things known to make RLS worse. There are many but the principle ones are other medications. Of these, antidepressants are the worst, especially SSRIs such as Citalopram.
I'm afraid that in the light of the evidence about augmentation, this consultant appears to be ignorant.
Please see this link
Just a couple of things that don't seem to have been mentioned which might impact your decision whether to discontinue mirapexin/ropinerole. There is some evidence to suggest that certain treatment drugs are more likely to work on those who have not previously augmented on a dopamine agonist such as mirapexin/ropinerole.
These include:
iron therapy - in particular an iron infusion - these seem to be more effective for those who have not been through augmentation - they do work for some who have been through augmentation but not all;
alpha2delta ligands such as pregabalin/gabapentin. These don't work for all sufferers and in fairness they do work for some who have been through d/a augmentation but there seems to be a higher incidence of failure amongst those who have been through augmentation;
the latest study about dipyridamole found a high degree of effectiveness in the study group of 29. However, the study group was previously untreated. Anecdotally, dipyridamole has not been so effective amongst those who have previously augmented on a dopamine agonist.
For these reasons, I would tend to try other options (all of the above) before seeking to rely on a dopamine agonist. Obviously, as you have already taken the drug for some time, you would need to discontinue very gradually and will unfortunately probably experience the almost intolerably exaggerated symptoms that almost everyone endures towards the end of the withdrawal process. However, ultimately, it might mean that you have preserved more treatment options for yourself as (from your description) you are either not yet in augmentation or in the very early stages of it.
If nothing else works, you can always return to the d/a as a last resort.
Research your Dr to make sure he understands what RLS is, knows about the different medications available and has treated patients previously with it. This has been one of my biggest problems. Dr not wanting to admit they know nothing about RLS. Knowing now what I do about dopamine’s, I would never have taken them.
Not what you're looking for?
You may also like...
Need advice on controlling RLS post -op
Treatment of RLS with Pramipexole
Need Advice RLS!
Need RLS Advice
Advice pls - what to change in my RLS treatment now I’m pregnant & still taking Ropinerole
Related Posts
looking for advice for RLS 
Dangers of Opioids for treatment of RLS
Successful treatment of RLS
First post in RLS forum help / advice needed Moderation team
