There are few things that unnerve me as much as RLS. My PCP has prescribed 5mg. Requip, but what do I do for the full body attack that happens early afternoon?
She suggested Lyricra {sP} but that gave my daughter terrible RLS symptoms and I am not big on anything that has its own set of problems.
Could I get some input from those of you on other RLS meds please? Especially if you have the symptoms in your arms as well as legs!
Looking forward to hearing from you!!
Soundsike you are augmenting.
5mg is 4mg above the max recommended dose.
Increasing the dose will only increase the symptoms.
Search the site for 'augmentation'.
You need a neurologist, onee that knows about RLS.
You'd need to slowly reduce your dose over time, which will set off rebound RLS.
You'll need an opiate or something like lyrica to get through the DA withdrawals.
I'm sure others on the site will help with suggestions too.
Sadly, there isn't much to help with the daytime RLS except reduce dose and get support meds.
Can you get a neuro referral?
You should do that sooner than later.
Most neuros don't know squat about RLS, or will say they do but don't.
There are a lot of resources here for that too.
I wish you much luck.
Also, Lyrica is a medication prescribed to treat RLS.
I don't think its known to cause it.
That said, everyone is different but that's not the typical experience and you might want to try it out.
It would be one med they would give to help decrease your requip dose.
Honestly, your doctor has no business prescribing that high a dose.
Did you start out there?
If you started low and kept having to up the dose to keep up with symptoms, you are definitely augmenting.
Increasing the dose is just going to increase symptoms and earlier in the day.
Highly encourage you to read up on augmentation then print it all out at take it to your PCP.
Dogdoo has said almost everything I would. It is possible that the full body afternoon symptoms are caused by augmentation - unless you experienced these before you started the ropinerole?
It is worth getting your serum ferritin checked (make sure you get the actual figure - not just that you are ‘normal’) and if it is below 100 start a supplement. Raising iron can help with augmentation and if you discontinue ropinerole it could help with overall symptoms.
Hi Memak
have had RL for around 40 years and tried all the usual pills to help and nothing did.
Then after trying a Parkinson drug (forget the name) I had been prescribed I developed Augmentation because of the drug (there are several pills used for RL that can cause this check it out.) MY RL became much worse and spread to my arms and was with me 24/7, it was horrendous.
I had to stop work.
I presented at A and E one morning because I felt as if I couldn't take it any longer. I had read about Longtec (an Opiod) and asked my GP for it. I am taking that now, a dose every 12 hours and it has revolutionised how I sleep. I can now lie in bed even if I am not sleeping!
Because of the potential issues around opiods, GPs are unwilling to prescribe them. Don't know if you have checked out the RL Foundation online? they have an interesting piece written by a well respected Doctor on Opiods and RL. Check it out.
The very best of luck on your journey and remember there are cures out there, you do not and should not have to suffer from this horrible disease, (or your daughter!) Keep away from any drugs that potentially cause Augmentation, they are toxic and can make things worse.
Jane x
As others have said it sounds like augmentation . Good luck with your withdrawal from the DA. Opiods should help. You could email Dr
Buchfuhrer for some advice.Hang on in there.x
I hope your PCP tritrated you up. Are you "seeing things"? I was taking 5mg and I was seeing bugs! My new PCP told me 4 mg was max dose for RLS. I reduced to 4mg and the bugs are gone!
Just to reiterate some of the things others have said.
Augmentation is a phenomenon brought about by taking Dopamine or "Dopamine Agonists" (DAs).
RLS usually starts in the legs and usually only in the evenings. When symptoms become more intense, spread to other parts of the body (e.g. arms), happen earlier in the day and the time between starting to relax and the appearance of symptoms gets less, that's augmentation.
If you experienced these before starting the Ropinirole (Requip) which is a DA, then augmentation isn't the problem, but even so, the DA, especially on the excessive dose you're taking is likely to make it even worse.
The alternative first line medications to DAs, which are less likely to cause augmentation (or worsening of RLS) are the alpha2delta ligands, (A2DLs). Gabapentin or Pregabalin being 2 examples.
These aren't quite as effective as DAs but can work for a lot of people. In the UK which is where most members of this forum live, National Guidelines for NHS doctors recommend an A2DL for RLS.
It is highly unlikely that Pregabalin (Lyrica) causes RLS, since it is used to treat it.
You will find that PCPs like our UK equivalent, GPs, are largely ignorant about RLS or how to treat it. A neurologist might be a little more knowledgeable, but I wouldn't rely on that either unless you can find/afford a RLS specialist near you.
Dr Buckfuhrer, based in California is a well reputed specialist. I believe John Hopkins has a good reputation too. Sorry, not sure where that is
Alternatively you can gather as much information as you can about RLS treatments, particularly the severe risks of DAs and take this to your PCP. It's worth a try, but docs don't generally like being faced with their ignorance, your's might be OK.
You do need to reduce the Requip and possibly switch to Pregabalin or Gabapentin. Don't let your PCP suddenly stop taking the Ropinirole and after that, start the A2DL. You can start taking an A2DL before stopping a DA as it takes a few weeks to start working. Suddenly stopping taking a DA cold turkey is very dangerous.
Slowly reduce the Ropinirole, you may need some help with withdrawal symptoms which will start shortly after taking a final dose
I have RLS 24/7. I just had an infusion for a low ferritin count. I have taken every medicine there is for RLS. I have seen a top notch neurologist and have been weened off of R equip. I am now back on the Requip, 6 mg a day. I cannot survive without it. I cannot lay down, sit rdown, watch TV, go to a movie, ride in a car or sit down for a meal without the Requip. If anybody has answers, I would love to hear them. It is very difficult to try and lead a normal life. I found the name of a center for restless legs. It is the John Hopkins Center for Restless Leg Symptom; Dr. Christopher J. Earley and Richard Allen. I will be getting in contact with them next week. Blessings to all and hopefully soon there will be a cure for this devastating illness.
Can i ask why you went back on the Requip after you successfully weaned of it? So of course you are now augmenting, you will again have to wean back off that high dose of Requip, that is really the only answer. If you get to see Dr Early at the John Hopkins Centre he will sort it all out for you, he is one of the best to see.
Try dividing the 5 mg into smaller doses and take more often during the day. I take .5mg Requip three times a day 10:00am - 3:00pm and 10:00pm. This manages the symptoms nicely.
Hello
I can only echo the suggestions of Dogdoo because I dont know the answer -my apologies.
I hope your issue is solved satisfactorily
I suggest looking into Mirapex and watching your sugar.
I had the good fortune to get an appointment with Dr. Buchfuhrer at Stanford. He took me off pramipexole and oxycodone, and put me on methadone, 5-10mg twice a day. The first three days were horrible, and then my symptoms pretty much disappeared. I am 79 years old, and have had intense RLS in my legs, focused around my knees since age 36. For the past five years it moved to my elbows.
I've been on sinemet, permax, and finally pramipexole for the past 20 years along with
up to 80mg of oxycodone per day. The pramixpexole is known for augmentation. I feel
so fortunate to be under Dr. Buchfuhrer's care. My first appointment was on September 9th, and Dr. Buchfuhrer told me that methadone works well as it is long acting and not as
addictive as oxycodone.
You, like me probably have Refractive RLS, and need to see an RLS Specialist, and perhaps get off the Requip and try methadone.
RLS causes excruciatingly intense discomfort, as you know, and I wish you all the best in finding the best care.
Dr Buchfuhrer is also one of the best to see . Wish we had Dr B here in the UK. 
Hi Railr
Just wondered how long you were on oxy for.
I have been in oxy for about 2 months however I have debilitating pain starts around 1 pm by 4pm I am laid up with heat packs on my legs .
I have just come down from 20 mg OxyContin to 15mg once a night .
It is great for stopping the movement Even if I can’t sleep I can lie in bed .
After you started the oxy Did the daytime symptoms worsen .
It truly is dreadful I have also had it since I was a child then really kicked during pregnancy late 20s then I had shingles in March this year I have never been the same .
I am thinking of flying from Australia to see Dr Buchfuhrer or Dr Winkleman.
I went to the John Hopkins early this year .
I am 54 and live in Australia no one here has a clue .
All the best 🙂
Hi Shumbah:
I was on oxycodone for over 30 years, and my maximum dosage was 80mg per day.
Also, I was on pramipexole for 18 years, and my maximum dosage was 1.5mg per day.
I had RLS attacks intermittently day and night. I started taking medical grade
cannibis, both topically and under the tongue about one year ago, and it seemed to
reduce the frequency of attacks. However, the RLS moved from my knees to my elbows,
and I rarely could get a full night's sleep.
After the war on opiates started, I had to go to a pain specialist to get the oxycodone
prescribed. The so called pain specialist knew nothing about RLS, and I was worried
about him stopping the oxycodone. I read about Dr. Buchfuhrer in the RLS news letter,
and was able to get an appointment with him at Stanford in Redwood City, California,
on September 9th. He had me stop the pramipexole and oxycodone entirely, and put
me on methadone, taking four, 5mg tablets per day. After about three days my RLS symptoms stopped. The plan is to see Dr. Buchfuhrer every six months, and in the interim he will refill my monthly methadone prescription.
Both Dr. Buchfuhrer and Dr. Winkleman, at Mass General in Boston, have excellent
reputations as RLS specialists. I hope I answered your questions, and wish you
all the best.
I have afternoon symptoms too worse if I get tired and lay down. I'm on mirapex and still have arm and leg symptoms every night so I wouldnt recommend that one.
Sounds like you are suffering with Augmentation. Look at the pinned post about augmentation, either at the side of this page or at the bottom of the page depending if you are using a phone or on a laptop, you need to read it.
Sorry to be so naieve but what is augmentation? r
You may find this link helpful regarding Augmentation: sleepreviewmag.com/2015/02/...
This link too: rls-uk.org/augmentation-reb...
Could this be restless legs syndrome?
Restless Legs or Nerve Damage?
Restless Leg Syndrome
Restless leg syndrome
45 years of restless legs
