I'm new here and hope to contribute to and benefit from this site.
Nighttime RLS started in 2010. My GP started me on Requip 1mg on 1/10/11. Worked for some months and then dosage was increased to Requip XL 2mg on 9/2/11. Worked very well for a couple of years and then worsening daytime and nightime RLS. Went to a Neurologist and he took me off Requip and started me on Neupro 2mg on 4/1/14. This worked for almost two years then symptoms came back, day and night. Neurologist increased to Neupro 3 mg on 1/11/16. This worked for a short time, then went to Neupro 4 mg on 11/22/17. I believe augmentation is in high steam as conditions have gotten extremely worse, even during the day. I did read on the Neupro site that the med may cause RLS to worsen after time, so I tried NOT using the Neupro patch and that was a DISASTER! Now the nightime RLS was in full gear! So, back on the 4mg Neupro and nightime sleep was good, daytime still ocurring several times per day. So I've been on Dopamine Agonists for seven years and possibly that is causing my daytime bouts. When RLS kicks in I become severely anxious and irritable! Going to another neurologist 2/28/18 and hopefully try another med.
People who have no experience with RLS cannot fully understand how debilitating this is, both physically and mentally.
Written by
lenpharleyd
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You will have to reduce very slowly with help of tramadol or OxyContin ( during withdrawal period). I know a lot on here cut the patch in half but maybe you can ask for 1 mg patches. Reduce by 1 mg every 7/14 days.
Discuss replacement drugs for when you’re off Neuro. Do not try another dopamine agonist. You’ve augmented on two already so you would augment quickly on any other.
Pregabalin (Lyrica) or Horizant would be the next option.
Read everything you can on here about Augmentation.
It is very hard but lots of us get through it and find the daytime RLS and irritability disappear. The trade off is that nighttime sleep is elusive but there are good nights.
I do feel your pain fully because I too suffer from RLS have fone for many years and it would kick in late afternoon if I don't take the Pramiprozole i take 4 daily and find they're quite good as i know it if I haven't taken them early enough. I empathize with you cause there's nothing as horrible as it. I had begun having RBS the body doing same thing as legs every few seconds it was head movement shoulder arm legs are bad enough to cope with without all them others joining in. The Pramiprozole help me maybe they might help you also God willing.
What happens then if I can't handle the RLS and also when its RBS by stopping taking the Pramiprozole as I couldn't suffer it its jus to severe. It stops me sleeping and that's bad enough for me as i don't get a lot of it. How would i cope. I ran out of them over one weekend and that's how I know I can't contend with it I was distracted to say the least. Help
It is hellish to get off the pramipexole but it's hellish to stay on them. You will find your RLS just gets worse and worse, starts earlier in the day and moves to other body parts. You are in a bad way now with full body RBS and lack of sleep and that is the praipexole. It has stopped working for you and has made your RLS much worse and made it move to your whol body.
The only way to do it is to reduce slowly over weeks/months and you need to see your doctor to get a strong opioid painkiller like tramadol or oxycontin to take during the withdrawal period.
I'm not going to lie- it is really, really hard and you'll think you can't do it. But you can and once through the withdrawal, you will find the RLS is back to what it was before you started on dopamine agonists.You won't get it in the day and it will only affect your legs. That horrible irritability will be gone as well. I went through withdrawall in 2016 with the help of the good people on here and I am so glad I did. I will never, ver take another dopamine agonist.
There are other drugs that work- pregabalin is a good option. If you start taking pregabalin during the last weeks of withdrawal from pramipexole.
You should have a look at Bganim posts. She came off dopamine agonists last year and is now on pregabalin and tramadol and doing well.
You should read all the links on here and print off articles on Augmaentation and show them to your doctor. Work together to get you off pramipexole.
Jooolsg is right on target and everyone would do well to heed the advice! I’ve experienced augmentation from Pramipexole and it is essential to wean off of it and then stay away from all dopamine agonists in the future! RLS is a nightmare condition to have as we all know but thankfully it can be managed by and large. I’m hopeful there will be a cure someday. Blessings!
I've had Pregablin and Gabapenten at diff times of course..very hard also to wean off but managed to over a period of months.
I've had RBS before going on Pramiprozole its been going on for sometime with me so i doubt its connected to the Pramiprozole.
My doc has prescribed naproxen and after that Maxitram but neither help only the Pramiprozole do if I take it early enough or if as soon as i feel a movement from it I take it.
So what would I benifit from weaning of Pramiprozole Joolsg but I do so appreciate all you have informed me about and thank you for your time spent doing so.
You would benefit by eliminating the full body RLS. If it’s moved to arms, back & other body parts that is classic Augmentation.
If you get off pramipexole completely, you will find the RLS settles down in severity , and you will only have it at night and in your legs.You can then move to other meds that will control the RLS.
You say you’ve tried pregabalin before, but if that was while you were on a dopamine agonist, it wouldn’t help.
Do look up the links on Augmentation posted by Kaarina and look up the posts by Bganim.
I really feel you’ll be in a better place if you get off the dopamine agonists, but only you can make that decision once you’re fully informed after reading all you can on here.
I wish you well whatever you decide to do.
Hi and welcome! You will get lots of support here!
Yep, sounds like augmentation. I’m so sorry. Here is a list of things I have tried in the past and/or are still trying:
(Note: not everything works for me all the time; that is why there are so many)
-Magnesium oil
-Magnesium tablets
-Epsom salt bath
-Heated massage (hand-held device)
-Compression stockings. The tightness these provide help calm my movements
-Jet spray massage. (I have a jet spray option on my shower head that I put right up to every inch of my legs)
-«Relaxing Leg Cream» by Magnilife. (If in the US, you can get this at Walgreens. If in UK, not sure. It is also available on Amazon)
-3 exercises in particular. (Found halfway down this website:
I was able to switch off the dopamine agonist pramipexole to another in the same class of drugs, carbidopa-levodopa, temporarily and then go back to pramipexole. Eventually I will augment again but I have trouble taking drugs like gabapentin and with opiates so with some luck I hope to get a few years of switching drugs back and forth. Then, I don't know. My neurologist would prefer I try Neupro as it is long acting by insurance will not cover it and the out of pocket cost is about $700 a month. No home remedies ever worked for me, no supplements, nothing. I do find massage cushions at least distracting from my wretched legs.
I have been on almost all the medications prescribed for RLS and finally after being on Mirapex for a number of years I went cold turkey and stopped it completely as I was taking more and more due to the symptoms occurring earlier and earlier in the day. I had been taking Percocet along with Mirapex and finally was using it without the Mirapex. My doctor who is a general practitioner at first had a problem with me taking Percocet but finally came around and has been working with me. He wanted me to try Tramadol and after about 4 months of taking it started have severe reactions to it. I am now back on Percocet. I have also been researching foods that contribute to the RLS as I believe some do affect it.. Recently I ate some Chinese food and had such a reaction with the RLS that it caused me to start researching foods. I believe that it has monosodium glutamate in it and believe it was the culprit. As a result I am doing more research on foods. I know that one site reported that Bananas are a good source. Don't know if anyone else is looking into this but would be interested.
Hi beckonwood. Interesting story. I am particularly interested to hear what reactions you had to tramadol. Mine is heart palpitations at doses over 50mg. It has settled down after reducing to (below) 50mg again, but it still doesn’t feel completely resolved. Also, you don’t have similar reactions to the oxycodone (Percocet)?
Sorry for my late reply. My reactions to Tramadol included the rls symptoms throughout my whole body. I was literally rolling on the floor as a result. I find that for the most part Percocet does help but not all the time. My doctor who is willing to work with me told me that Tramadol is changed into an opioid by ones own body. Strange but it sure didn't work for me. The first month I was on it I went for almost about a month with it working then after that it got much worse. I am of the belief that there is probably no meds that really helps over a long period of time.
UPDATE: Not sure if this is how I should post an update?
After research and reading all the information on augmentation with dopamine agonists I've decided to try and wean myself off the Neupro patch. I've reduced Neupro from 4mg to 3mg. Had occurences during the day but slep well at night for 2 days/nights. On the 3rd day, daytime was good but nightime was bad, slept on and off for 5 hours.
Yesterday, I saw a new Neurologist today, explained my history with RLS and all the research I've been doing on augmentation with dopamine agonists. He is trying me on gabapentin 300mg in the morning with continued Neupro 3mg late afternoon. However, he feels that ropinerole is the best course of action in the long run. My next visit with him is in 1 month.
The gabapentin made me very tired and both legs started muscle tightening at the same time which has never happened before, it was either one or the other. So, kept walking while feeling very drowsey. Used my hot tub and had no issues with the legs after that and also slept well.
So, I will continue trying the gabapentin and Neupro 3mg for 7-14 days and then try to cut the patch down to 2mg, doing this every 7-14 days to wean off the Neupro as suggested by Joolsg. I'm not sure how this is going to work but at this point I will try almost anything.
Thank you for this site with all this great information and to those that have replied with very helpful information. I will keep you posted. Hope that's ok?
Len
Hi well sounds like the neuro doesnt understand augmentation seeing you had to explain it all. You seem to be doing well on the weaning off the patch. It not a good idea to go on to ropinerole as you are augmenting on the patch, and by taking another dopamine med you will just keep augmenting, So, you need a different class of meds to take. Yes, keep us informed on how its going .
Slept great last night. Today I took the gabapentin at 11am and was able to sit all day until 3:30 when I had a very mild occurrence. Put the 3mg Neupro on at 4pm and no other incidents so far.
If it keeps going like this I want to downgrade to 2mg Neupro next week, I hope! Don't want to have false hopes though.
2/23 Update: It was a great day until 8:40pm when I had a bout that lasted around 20 minutes, walked around and went away. At 10pm had another bout that lasted for 40 minutes and finally went away and went to bed. Slept well!
The temptation is to go back to Neupro 4mg but will not as I want off this DA!
Well done you, Len. You beat the temptation. Power to you. It is a good idea writing it down on a daily basis. This "diary" will help you and others too.
Update 2/26: Today I reduced the Neupro to 2mg after reducing from 4 to 3mg a week ago and now at 10:19pm the RLS is in overdrive! I take 300mg Gabapentin in the am and just took one to hopefully help tonight. I hope it works!
Why are you taking the gabapentin in the AM? It then will have almost left your system by the time you really need it, that is in the evenings and at night. Better take it 2-3hrs before ypur usual bedtime.
My Neurologist suggested taking it in the am due to me going thru augmentation during the day, and that has worked fairly well for the daytime issues. After tolerating the severe RLS last night for some time, I took a second Gabapentin 300mg and low and behold I slept great the rest of the night. He wrote the script for 2 per day but said to try only 1. So, I'll be taking 1 in the am and 1 before bed. I hope that works like it did last night. I'll keep you posted. Thank you!
Yesterday, 2/27, I took the gabapentin 300mg at 7am and neupro 2mg at 4pm. At 6:15pm the RLS was really bad, walked around and it stopped at 6:55pm. Took a gabapentin 300mg at 7pm. RLS both legs started at 7:40pm, walked around and finally stopped at 9pm. Slept 2.5 hours, RLS started then stopped after walking for an hour. Slept another 2.5 hours, RLS started really bad then stopped after walking for an hour. Slept an hour and again it started really bad.
2/28 I went o my GP and had a feeling of having to urinate (this usually brings on the RLS) but didn't because I wanted it to kick in and him see it when the augmentation reaction happens. It was miserable waiting for him. After seeing me he wanted me to go to the ER and have an evaluation for severe leg pain and a US ??? nervous & arterial lower extremities for severe leg pain. I didn't go as I'm not sure this will do any good.
Question: Did I reduce the neupro to 2mg too soon??? I went from 4mg to 3mg in a week, then from 3mg to 2mg in another week. I planned on reducing to 1mg (by cutting the 3mg up) next week. Too soon? Or just bear it to get off the DA???
Man, I’m so sorry! I say yes, you are reducing too fast, but the prescribing doctor should be the one to confirm this.
Another thought: I know that some medicines are not good to cut up because of where the medicine is located. Even though I have heard that it is okay to cut the patch (going from 2 to 1, for example), I’m not sure that cutting up a 3 in a good idea. How do you know you’re getting the right dosage, then?
Well, it's been hell the last few days! Last night I couldn't take it anymore and went back to the 3mg neupro and after an hour ws able to sleep for 4 hours.
I'm going to make an appointment with Dr. Anderson in Tampa who is listed as an RLS specialist on the rls.org website. My current GP and Neurologist just don't know about augmentation and RLS. Fingers crossed!
Yeah, I get it (and I definitely get taking yourself up in dose because of not being able to take it!!). It’s hell, isn’t it? I’m so sorry you’re going through this and I really feel for you. I really wish there was something I could do,. It’s so maddening, isn’t it?
Make sure you get plenty of liquids. One of the things I forgot to include in my list is pineapple juice, which I drink when I’m having RLS-related pain because it’s supposed to help with inflammation.
I know it’s not enough (heck, nothing is in hell), but please know that I am here for you and am rooting for you to get through this. It’s utterly despairing going through it and there was no light at the end of my tunnel when I did, but I survived and am here to tell you that you will too.
UPDATE 3/26/18: Last neurologist visit on 3/21 has me on an agreed upon path of getting off the Neupro patch and all dopamine agonists. Currently still on the Neupro 3mg and now taking Gabapentin 300mg 4 times per day. Instructed to reduce Neupro to 2mg on 4/6/18, then switch to Gabapentin 400mg 3 times per day.
So far the Gapapentin has greatly reduced, almost eliminating, my day time muscle contracting/jerking and I'm actually able to sit for a prolonged time. I hope this continues!
My next visit is 4/11/18 and really don't know what the plan is after that.
I also learned that taking magnesium may decrease the effectiveness of the gabapentin, so I will cease the magnesium.
Thank you for all your helpful comments and for this site which has educated me like no other!
Officially it is not supposed to be possible to augment on gabapentin but there are anecdotal cases of it. Alison7 is convinced it caused augmentation in her and she is a fairly balanced sounding individual. However I doubt you would get augmentation over a period of months. It is likely to take longer than that (if at all). I would therefore continue to use the gabapentin to help while you reduce the neupro.
As to eliminating neupro, 3 weeks is quite a short time. Would you consider cutting a 1mg patch in half and reducing to 1 and a half patches after 3 weeks and then go down to 1 maybe 2 or 3 weeks after that? It is a less drastic reduction for your body to absorb. Be warned, however, no matter how you go about the final reductions your body is going to go mad looking for its dopamine fix and your rls will be constant - particularly through the night. The only drug it will respond to is an opioid. Gabapentin will not help during the final critical stage though it should become useful again once you have eliminated the neupro from your system.
Finally, in your shoes, I would not entertain the notion of returning to ropinerole as your neurologist suggested. You need a long period - at least 6 months, preferably over a year and most likely never - before you can resume a dopamine agonist drug once you have augmented. Augmentation tends to set in very quickly again. However, it is worth bearing in mind that once you have washed out the neupro your rls should reduce quite a bit in severity from the level it is at while you are augmented.
Thank you very much for your response. I will go more slowly in reducing the Neupro but really want off of it and all dopamine agonists and am not looking forward to the affects that it will bring. I wish I was told about dopamine agonists when I was first prescribed but that's water under the bridge. Onward!
Hi. I was never told about the side effects of the DA Pramipexole when I was prescribed it for my PLMD in 2011/2012. Therefore, I was in for a big surprise when I augmented on it in 2015. You would think doctors would warn us about these things, don’t you? Especially if it involves a drastic change in lifestyle! You are right, though. We should look forward and not let it get us down. When I first learned that what was happening to me was a known side effect, I was very resentful towards the prescribing doctor (he’s just lucky I was on the other side of the Atlantic when it happened). It definitely causes undue stress to worry about what has passed.
I too felt resentful (actually that is a very restrained word for what I felt) about the lack of warning when I discovered the horrors in store for anyone coming off mirapexin but I have to consider that I got 10 years of almost normal life thanks to it (albeit in ever increasing quantities). There are so few really effective treatments for Rls.
Len, it is probably worth trying to get your serum ferritin as high as possible as soon as possible. I am sure I have read somewhere that high serum ferritin helps with the recovery process from eliminating a d/a. Certainly if you go onto ropinerile keep your serum ferritin as high as you can as there is a link between low iron and augmentation.
I understand what you are going through. I've had RLS for over 25 years and it is so bad sometimes I just can't take it. I'm goin g on a trip at the end of May and the flight is 11 hours. I am so afraid that RLS will strike while on the plane. I have been on Mixapex for more years than I can count and the doctor wants me off of it. I also take Clonazepam. The two together helped for several years with some adjustments. I still had RLS break through.
One doctor had me on methadone and the side affects were terrible. Now my new doctor wants me off the Mirapex and I have tried, but the RLS gets so much worse. I have not told him that I am back on it. I wish I had more to tell you that would help. Sometimes I get in a very warm tub to help me relax. That helps sometimes, of course I splash a great deal of water on the floor. The other thing that helps is my husband takes me to a casino and the lights and sounds take my mind off of the RLS. It can be a little drastic, but it has helped.
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